HELP!!! i am looking for a doctor to take notice of my daughters symptoms? south east

[mummyof4]

Hi all,
looking for a good doctor to take notice of my daughters symptoms and high readings of glucose levels? anyone here live in south east london and know anyone that might be able to help? please?
i need a refferal the specilist has said she will see holly but she need to be reffered? and my doctor wont reffer us :(

please look at the other thread for more info thanks xx

http://forums.childrenwithdiabetes.com/showthread.php?t=25679

[Jackie UK]

Hi all,
looking for a good doctor to take notice of my daughters symptoms and high readings of glucose levels? anyone here live in south east london and know anyone that might be able to help? please?
i need a refferal the specilist has said she will see holly but she need to be reffered? and my doctor wont reffer us :(

please look at the other thread for more info thanks xx

http://forums.childrenwithdiabetes.com/showthread.php?t=25679

Hi mum of four. The best place to find info of this sort is to go to the UK CWD mailing list there are nearly 200 regular posters there with quite a number from the London area. I am not in London myself and hospitals, even within a very small area can be quite different in the care that they offer. What insulin regimen are you using and how long has your daughter had diabetes? What have you tried so far. Do you have an insulin pump?

Which hospital is the one that you want to go to? Is it your current hospital consultant who will not refer you, or is it your GP?


If you go to this link you will find details of the CWD mailing list where there are parents who have been in a similar postion and will tell you how to go about this.

http://www.childrenwithdiabetesuk.org/

[Jackie UK]

Hi all,
looking for a good doctor to take notice of my daughters symptoms and high readings of glucose levels? anyone here live in south east london and know anyone that might be able to help? please?
i need a refferal the specilist has said she will see holly but she need to be reffered? and my doctor wont reffer us :(

please look at the other thread for more info thanks xx

http://forums.childrenwithdiabetes.com/showthread.php?t=25679

I have been reading some of the messages that you posted in the past on the board in a different section. Is this right that you have not even been refered to hospital yet and that your daughter has high BG levels and diabetes symptoms?

It looks as though this has been going on for weeks. You should take her to your local hospital as soon as possible if she hasnt been seen and diagnosed with diabetes. There is nothing else that causes high blood glucose levels.
It is a matter of urgency.

There is a page on the UK Children with diabetes called Parents stories and you can see how many of the parents also had to fight to get a diagnosis and some children ended up on life support. Do not wait much longer.

See this link to other parents expirences

http://www.childrenwithdiabetesuk.org/index.php?page=parents-stories

[Alba37]

Hi Jackie,

I have followed Mumof4's thread.

As she is not around tonight, I just wanted to let you know she has been to A&E twice I believe. Phoned NHS direct who told her to go to A&E or her GP. She got in contact with a diabetic nurse who told her she needed a referral from her GP. She enquired about a private consultation, but was also told she needed a GP referral. Her GP will not refer her, she has asked several times. The last time he terminated the call. Holly (her daughter) is showing symptoms of diabetes. She has also had several high BG levels. She has sent off a home A1c, and is checking Holly's BG reguarly.

She feels like she has tried everything possible to get Holly tested. The only option now seems to be to change GP's and that's what she is going to do.

I think everyone who has read the thread is worried about her.

A x

[Jackie UK]

Hi Jackie,

I have followed Mumof4's thread.

As she is not around tonight, I just wanted to let you know she has been to A&E twice I believe. Phoned NHS direct who told her to go to A&E or her GP. She got in contact with a diabetic nurse who told her she needed a referral from her GP. She enquired about a private consultation, but was also told she needed a GP referral. Her GP will not refer her, she has asked several times. The last time he terminated the call. Holly (her daughter) is showing symptoms of diabetes. She has also had several high BG levels. She has sent off a home A1c, and is checking Holly's BG reguarly.

She feels like she has tried everything possible to get Holly tested. The only option now seems to be to change GP's and that's what she is going to do.

I think everyone who has read the thread is worried about her.

A x


I wish I had seen the thread ealier ,it was only because Coleen posted it to me that I came and looked. Unfortunately we have quite a high number of parents with children on the UK CWD mailing list who have had the same treatment and more that three for the children were close to death when they were finally taken in all because GPs said that there wasnt much wrong with the kids. I have been nagging Diabetes UK for years about the school s problems and the lack of training GPs seem to get to recognise diabetes symptoms. Last week we had the uk parents from the UK mailing list write some "diagnosis stories" to go on the website and I wept when I read some of them. Many GPs seem to be under the impression that children do not get diabetes and that it is extremely rare. Me thinks its time again to tell Diabetes UK they need to get the message across to primary carers. Also the guy at the hospital who took the BG level again and found it in normal range could easily have given her daughter a drink and tested the BG levels again shortly afterwards. what are these people like!

mumof4 is obviously very desparate and I didnt understand the first post on here because I thought that she was already with a hospital.

I do hope that things are sorted out. It pretty difficult if you get an arrogant ******** who will not listen and who is always right!

[Jackie UK]

Hi Jackie,

I have followed Mumof4's thread.

As she is not around tonight, I just wanted to let you know she has been to A&E twice I believe. Phoned NHS direct who told her to go to A&E or her GP. She got in contact with a diabetic nurse who told her she needed a referral from her GP. She enquired about a private consultation, but was also told she needed a GP referral. Her GP will not refer her, she has asked several times. The last time he terminated the call. Holly (her daughter) is showing symptoms of diabetes. She has also had several high BG levels. She has sent off a home A1c, and is checking Holly's BG reguarly.

She feels like she has tried everything possible to get Holly tested. The only option now seems to be to change GP's and that's what she is going to do.

I think everyone who has read the thread is worried about her.

A x


I also meant to say thank you for replying. I have a 14 year old daughter with diabetes and administer the UK parents mailing list which is so busy that I dont always get time to look at the message board. The UK section is missed by some and so isnt always very busy. Are you from Scotland? We have several list members from Scotland.


Jackie

[Alba37]

I also meant to say thank you for replying. I have a 14 year old daughter with diabetes and administer the UK parents mailing list which is so busy that I dont always get time to look at the message board. The UK section is missed by some and so isnt always very busy. Are you from Scotland? We have several list members from Scotland.


Jackie

Hi Jackie,

Yes, I am! I have a 15 year old son. He's been diagnosed 2 years but still don't know what type he has. He's hopfully getting MODY tests soon. He's struggling, as am I, to be honest.

I joined the mailing list, but amn't quite sure what I'm doing!

I have been pretty pre-occupied with Marc. I've just managed to get a proposed Care Plan from the school after 2 years of trying! I've posted it here, but I think I'll attempt to post through the mailing list for feedback!

One problem we didn't have was his diagnosis. All done in one day. I've been so shocked and upset with Tracy's experience trying to get Holly tested. All I can say is thank god she hasn't given up and has sought advice here. I think there has been quite a bit of mal practise through Tracy's journey so far.

Thanks

Aileen x

[Jackie UK]

Hi Jackie,

Yes, I am! I have a 15 year old son. He's been diagnosed 2 years but still don't know what type he has. He's hopfully getting MODY tests soon. He's struggling, as am I, to be honest.

I joined the mailing list, but amn't quite sure what I'm doing!

I have been pretty pre-occupied with Marc. I've just managed to get a proposed Care Plan from the school after 2 years of trying! I've posted it here, but I think I'll attempt to post through the mailing list for feedback!

One problem we didn't have was his diagnosis. All done in one day. I've been so shocked and upset with Tracy's experience trying to get Holly tested. All I can say is thank god she hasn't given up and has sought advice here. I think there has been quite a bit of mal practise through Tracy's journey so far.

Thanks

Aileen x

Hopefully she may have gone to hospital tonight.


There is a family on the mailing list where 3 members have MODY dad and two or maybe three boys and one boy has MODY and Type 1. I think that they are treated at Chichester hospital. Have you managed to find info on MODY. There is a bit more about than there used to be.

It’s quite difficult to tell with teenage boys unless you do the genetic tests, because in my experience of hanging round diabetes forums many (10 years) a few teenage boys have very small insulin needs and honeymoon for years. This can be quite confusing and makes you wonder whether, for some children, the destruction of the islet cells goes on for a very long time with some partial recovery of a few islet cells at times. Hopefully you will get a diagnosis sorted soon. Sorry to hear about the school problems. School problems are the reason the UK mailing list is kept so busy. There are more posts about school problems than posts about general diabetes care.


Jackie

[Alba37]

Thanks Jackie.

That's very interesting about some teenagers having apparent long honeymoon periods!

I think I have just sent my first post on the mailing list (if I did it right!)

I really do hope Tracy gets Holly's diagnosis soon. I find it so hard to think of a 2 year old, being unwell and no one taking notice.

Aileen x

[mummyof4]

Hi everyone,
so sorry i haven't been around tonight! (i took a night off and went to a friends house) i have been feeling so run down the past few weeks with all this going around my head? not left hollys side (and they said i need 10mins to my self) i think i did and all i could think about was this it's driving me mad................... :mad: i wont stop untill someone sorts this out? i didn't think that could do that glucose test? but i was talking to my friend tonight and she said her friend works at the nhs building and shes sure there a walk in clinic that do the glucose test? (shes going to let me know by monday) and see if there's anything else she can find out. thank-you all so much for your help and once again sorry i was not here to reply my self xxxxxx

[Jackie UK]

Hi everyone,
so sorry i haven't been around tonight! (i took a night off and went to a friends house) i have been feeling so run down the past few weeks with all this going around my head? not left hollys side (and they said i need 10mins to my self) i think i did and all i could think about was this it's driving me mad................... :mad: i wont stop untill someone sorts this out? i didn't think that could do that glucose test? but i was talking to my friend tonight and she said her friend works at the nhs building and shes sure there a walk in clinic that do the glucose test? (shes going to let me know by monday) and see if there's anything else she can find out. thank-you all so much for your help and once again sorry i was not here to reply my self xxxxxx


Hi

Sorry I didnt see any of your ealier messages. I run the CWD UK parents mailing list and we have loads of parents on there and I dont come to the message board too often. Unfortunately many have had problems getting a diagnosis and being fobbed off. What I would do is take a few more regular blood test post meals, I hour later and 2 hours later. Write down the times etc. Fasting morning tests are not very good for indicating diabetes in children in honeymoon because of the overnight fasting and the pancreas still producing some insulin, the morning levels are often normal. Also urine test can be so dilute from a child drinking so much, that these are sometimes not reliable.

How many test strips do you have? What sort of meter have you got?

Can you see any other doctor in your GP practice who will take more notice?

Another way could be to return to the hospital and if her BG level is normal ask them if they will let you stay and see what happens after your daughter had drunk orange juice or non diet coke or Lucozade.


Dont give up. You are in a terrible situation.


There are other parents on the CWD mailing list who may be able to help with more suggestions as I have to go out right now.

I will also ask the parents from the UK mailing list to come to this board and post.

To join the mailing list see info here.

http://www.childrenwithdiabetesuk.org/

I have to go out now but will be back later

[Adrienne UK]

Hi Mummyof4

I'm from the children with diabetes UK email group. Jackie UK has asked if anyone can join and help you so here I am. I am popping out in a minute for an hour but will be back then for a while then going out again later.

I am from the south east of London. I lived in Bromley all my life and moved to the coast (Hastings way) last December. Where are you in SE London? I know quite a few people in diabetic families around this area and someone may be able to help you who lives near.

You are in a most awful position. I am pretty sure that I could get hold of my old doctor tomorrow and she would be able to suggest something maybe. I would like to help you do something. I would suggest for the time being you finger test on a two hourly basis. If you can't get any more strips then for the time being you will just have to keep buying new kits, you could go and stock up in the local Boots or something. Have you tried speaking to a chemist? I know it is not the same as a GP but they have a lot more clout at the moment and if you get one of them on your side, it may help. A chemist may also be able to sell you some test strips.

I am happy to speak to you on the phone it you like but don't want to post my number on this message board. I have only just joined and have no idea about the site really. If you give me your email address I'll email you my number.

I really feel for you and want to help you.

Take care and you are right to be worried, motherly instincts beat most dr's text book stuff every time.

Adrienne
(mum of Jessica, aged 8, type 1 since 5 weeks old, pumping for two years, UK)

[mummyof4]

Hi

Sorry I didnt see any of your ealier messages. I run the CWD UK parents mailing list and we have loads of parents on there and I dont come to the message board too often. Unfortunately many have had problems getting a diagnosis and being fobbed off. What I would do is take a few more regular blood test post meals, I hour later and 2 hours later. Write down the times etc. Fasting morning tests are not very good for indicating diabetes in children in honeymoon because of the overnight fasting and the pancreas still producing some insulin, the morning levels are often normal. Also urine test can be so dilute from a child drinking so much, that these are sometimes not reliable.

How many test strips do you have? What sort of meter have you got?

Can you see any other doctor in your GP practice who will take more notice?

Another way could be to return to the hospital and if her BG level is normal ask them if they will let you stay and see what happens after your daughter had drunk orange juice or non diet coke or Lucozade.


Dont give up. You are in a terrible situation.


There are other parents on the CWD mailing list who may be able to help with more suggestions as I have to go out right now.

I will also ask the parents from the UK mailing list to come to this board and post.

To join the mailing list see info here.

http://www.childrenwithdiabetesuk.org/

I have to go out now but will be back later

Hi there,
at the moment i am using the onetouch meter i did have the accu-chek before (but i think it was broken so just brought another to be safe) i am waiting on some more test strips should be with me monday or tuesday. (pack of 50)
Both the doctors, have been talking and they both feel with the result he got theres no need to worry? and say that she can't have D or she would be on deaths door right now? (i know this is not the case) i am planning to go back and tell them that i will make an appointment eveyday untill they listen to me and refer her............(you call at 8am and they give you a time to come down) hopfully they will just get fed up with me and just refer me? i have tried being polite and telling them my concerns but there just not listening so this is going to just have to be the way? i can't think of anything else to do?
my friend also told me last night that she thinks theres a walk in clinic that do the glucose test (shes going to find out on monday) and i should get the
A1c results sometime this week. i am also going to keep a track on her Blood sugar levels and take them to the docs with me. :cwds:

[mummyof4]

Hi Mummyof4

I'm from the children with diabetes UK email group. Jackie UK has asked if anyone can join and help you so here I am. I am popping out in a minute for an hour but will be back then for a while then going out again later.

I am from the south east of London. I lived in Bromley all my life and moved to the coast (Hastings way) last December. Where are you in SE London? I know quite a few people in diabetic families around this area and someone may be able to help you who lives near.

You are in a most awful position. I am pretty sure that I could get hold of my old doctor tomorrow and she would be able to suggest something maybe. I would like to help you do something. I would suggest for the time being you finger test on a two hourly basis. If you can't get any more strips then for the time being you will just have to keep buying new kits, you could go and stock up in the local Boots or something. Have you tried speaking to a chemist? I know it is not the same as a GP but they have a lot more clout at the moment and if you get one of them on your side, it may help. A chemist may also be able to sell you some test strips.

I am happy to speak to you on the phone it you like but don't want to post my number on this message board. I have only just joined and have no idea about the site really. If you give me your email address I'll email you my number.

I really feel for you and want to help you.

Take care and you are right to be worried, motherly instincts beat most dr's text book stuff every time.

Adrienne
(mum of Jessica, aged 8, type 1 since 5 weeks old, pumping for two years, UK)

Hi there i'm not to far from bromley (in penge)
I am just so stuck right now and scared and fed up with the way we have been treated!!! :mad: if they could explaine another reason for the high blood suagr levels i have been getting then i would feel alot better But they can't? so i think doing more tests is the best way to rule this out and then do more tests to find out whats going on? like i just said in my other post i am not going to give up! what if she does have D then in a few weeks months (i don't know) she could be on deaths door and i'm not going to risk this happening to my baby. :(

[Adrienne UK]

Hi

Small world. I have worked in Penge for 20 years. My dad has a solicitors office there and I work for him. I still work for him but over the internet now. So what hospital have you been to, Lewisham Hospital or the PRUH in Farnborough? The Diabetic Specialist nurse at the PRUH is no good but the consultant is ok. Not sure about Lewisham, I will find out and get back to you. You can always go to Kings College Hospital, I have a friend whose son goes there and apparently they are ok for diabetes. They are a teaching hospital as well so are up in all things or should be.

I would be tempted to go to Kings today, they have an A&E and take with you everything you have so far and say you are at the end of your tether and desparately need help and just beg and beg. Say you have got advice from lots of people you know whose children have diabetes and the readings you have been having are no good and you need your daughter to have a diabetes test, properly before she does go into DKA. If she goes into that it could be fatal. You cannot get a referral as your GP is rubbish and won't listen. Sit there until you get a result and don't move. Don't be angry and don't be rude just be totally deflated and worried. Say it is too dangerous to go home with your daughter and you know something is wrong, no-one should have readings of 17.0 odd ever unless there is a problem.

I'm going out now but will be around later.

Adrienne

[mummyof4]

Hi

Small world. I have worked in Penge for 20 years. My dad has a solicitors office there and I work for him. I still work for him but over the internet now. So what hospital have you been to, Lewisham Hospital or the PRUH in Farnborough? The Diabetic Specialist nurse at the PRUH is no good but the consultant is ok. Not sure about Lewisham, I will find out and get back to you. You can always go to Kings College Hospital, I have a friend whose son goes there and apparently they are ok for diabetes. They are a teaching hospital as well so are up in all things or should be.

I would be tempted to go to Kings today, they have an A&E and take with you everything you have so far and say you are at the end of your tether and desparately need help and just beg and beg. Say you have got advice from lots of people you know whose children have diabetes and the readings you have been having are no good and you need your daughter to have a diabetes test, properly before she does go into DKA. If she goes into that it could be fatal. You cannot get a referral as your GP is rubbish and won't listen. Sit there until you get a result and don't move. Don't be angry and don't be rude just be totally deflated and worried. Say it is too dangerous to go home with your daughter and you know something is wrong, no-one should have readings of 17.0 odd ever unless there is a problem.

I'm going out now but will be around later.

Adrienne

Hi there belive it or not i have been to both hospitals, the doctor at Farnborough (i was sent round to mdoc) was really understanding but said that he couldn't refer her, as he was not aloud to do that and if he thought someone needed to be refered then he would send them back to there GP for a referal. i have said this to him (the doctor at MDOC) i am not going to stop untill i get a referal but wont take her to the hospital today as they will inform my H/V and i want to talk to her before she gets another report saying that i'm crazy lol (shes really understanding) i want to get a little bit more on my side if i can? like the A1c (hopfully that shows somthing?) some more blood test results ect. (well i say i hope it shows somthing i really hope it don't and i hope i am going crazy) lol :rolleyes:

[bex]

Hi Tracy

I was directed to your posts through CWD UK from the list manager Jackie Jacombs. I cannot believe what i have read. My heart goes out to you and your family. I cannot believe how ignorant and dangerous some doctors in the UK can be!!

We live in Harlow, Essex so quite near to you maybe? I think the advice that people have posted has been fantastic and you HAVE to keep at this. I can only imagine how draining it all is.

Just wanted to show my support to you and offer any advice/help in the future. My daughter is 6 and was dx three years ago with type 1 (need to change my signature!!)

[Jackie UK]

Hi there belive it or not i have been to both hospitals, the doctor at Farnborough (i was sent round to mdoc) was really understanding but said that he couldn't refer her, as he was not aloud to do that and if he thought someone needed to be refered then he would send them back to there GP for a referal. i have said this to him (the doctor at MDOC) i am not going to stop untill i get a referal but wont take her to the hospital today as they will inform my H/V and i want to talk to her before she gets another report saying that i'm crazy lol (shes really understanding) i want to get a little bit more on my side if i can? like the A1c (hopfully that shows somthing?) some more blood test results ect. (well i say i hope it shows somthing i really hope it don't and i hope i am going crazy) lol :rolleyes:


Hi Tracy.

I dont think that you should bank on the HbA1c giving a diagnosis on it’s own. My mother has diabetes and is on no medication for it but her HbA1c is 5% which is in the normal range. She is 85 and has either type 2 (though not overweight) or very slow onset type 1.

You will only get a raised HbA1c if the blood glucose levels have been out of range and high for a considerable period. As Holly is still producing quite a lot of insulin and may be only spiking up after some meals its quite possible that her HbA1c could be in the normal ranges at the moment.

With the figures you are quoting that you have found, it looks to me as though your daughter is in the remission, or the so-called honeymoon period. This is where the pancreas is still capable of producing quite lot of insulin. The destruction of the beta cells, which produce the insulin, is usually a long slow process and this process may have started many, many months ago.
When someone has diabetes it's usually the first phase response insulin response which is affected first. What happens when someone without diabetes eats carbohydrate is that the pancreas produces a first phase response and kicks out insulin. Immediately to lower the blood glucose levels and then continues to produce background insulin. In the beginning of type 1, the pancreas might produce some insulin, but not enough and too late. This causes the blood glucose to rise shortly after a meal. However, because the pancreas is still producing quite a lot of insulin, a while after the meal the BG levels may well return to normal levels. If indeed you are having the high levels you have said, followed by normal levels this is very typical of the presentation of type 1 diabetes and your doctor should know this. However often GPs have very very little training on diabetes and in their lifetime of practice may only ever diagnose one or two children. However as we know the number of young children developing type 1 had increase greatly. This is no excuse for not taking any notice of what you are saying. There are no other reasons for the glucose levels to be at the levels you have found apart from diabetes. There is nothing else that causes this apart from steroids sometimes having this effect. Even then, unless one already had diabetes one would not expect to see the high levels you have seen.
It is not true, as you realise, that a child would be at death’s door when a diagnosis is made. My daughter wasn’t, I picked up on her symptoms myself, she had been unwell with stomachaches and generally unwell on and off for weeks. Always starving hungry and very skinny. Though she was still going to school and playing with her twin sister. It was obviously to us later, that she had high BG levels on and off for months but there was some recovery in between. I took her to the doctors several times between January and April with various stomachaches and just feel unwell but she keeps bouncing back a few days later and all seemed ok. In April 1999, I was just visiting the doctor to have Sasha's ears checked out as she had had two severe prolonged ear infections and several lots of antibiotics. She had finally recovered. She didn’t even seem particularly ill, but the day before she became hysterical when we were stuck in traffic a few minutes from home because she wanted a drink NOW!! I had never seen Sasha like that before. It rang bells because one of my school friend was diagnosed with diabetes and terrible thirst had been her main symptom. I took a urine specimen to the GPs that day just to "rule out" diabetes!! Which of course it did not. The urine was full of glucose and we were packed off to hospital immediately. At the hospital someone tested her on a meter and just said it said HI, which meant nothing to me. HI means that the BG level is too high for the meter to read because it only goes up to 33 mmols. We were waiting around after being booked in and someone came eventually to give Sasha some insulin. We were still expecting a whole round of blood tests first. My husband said "Hang on a minute, aren’t you going to do some more tests for diagnosis "? and they just looked at us sadly and said that there was no doubt and there was nothing else that cause high BG levels like she had.

Sasha was pretty “well” considering. No ketones either because she was still producing some of her own insulin.

Your doctors should not be dismissing your worries they should be pleased that you are a caring parent who picked up on the symptoms early.

A fasting blood glucose test may quite possibly be normal at this stage because overnight the levels come down, because there is no food to deal with so the pancreas can still produce enough background insulin. So a fasting test in the case of a child presenting with early symptoms of diabetes should not be used as a diagnostic method. Nor should a negative urine sample. The BG levels have to have been quite high for a longish time for glucose to spill into the urine. It is also possible for the urine to be so diluted from drinking lots of water that the test may be negative.
A random sample taken after a meal 1 to 2 hours later and during periods during the day is the best way of checking whether indeed future tests are needed.

If one catches diabetes early, it is possible to prolong the honeymoon period. Once the stress is take off the pancreas, some of the beta cells recover for a while and this means that you need less insulin and BG control will be easier for longer. Some children who are diagnosed early need very tiny amounts of insulin for a long time. So although Holly doesn’t sound as though she is really very poorly at the moment, an early diagnosis is very important. If Holly should catch a cold or other virus, then the diabetes symptoms could get worse very quickly. It amounts to negligence on the part of your GP to not listen and refer you to someone. Hmm, I wonder if the surgery gets a bonus for not referring patients to hospital. Or is that something that the government are still planning!!!


I had the most awful experience with one of my older daughter Danni who was seriously ill three times and two of those times we had to fight like mad to get anyone to take notice and we were even sent home from hospital twice being told that nothing was wrong with her. She nearly died and if I hadn’t kept taking her back to the doctors she probably would not be here now. This experience has somewhat jaded my view of some doctors. The desperation one feels when know one is listening is agonising.

I do hope that you get referred soon.

Keep notes and times of when Holly eats and what the blood tests readings are. You are less likely to see high levels in the morning in the beginning. Doctors mention fasting blood glucose tests because this is the test they often do for type 2. The doctors could have arranged for a glucose tolerance test to be done.

Let us know what happens. We will be thinking of you.


Some more info
http://www.staff.ncl.ac.uk/philip.home/who_dmc.htm#DefinDiag
2.2.2 Diabetes in children
Diabetes in children usually presents with severe symptoms, very high blood glucose levels, marked glycosuria, and ketonuria. In most children the diagnosis is confirmed without delay by blood glucose measurements, and treatment (including insulin injection) is initiated immediately, often as a life-saving measure. An OGTT is neither necessary nor appropriate for diagnosis in such circumstances. A small proportion of children and adolescents, however, present with less severe symptoms and may require fasting blood glucose measurement and/or an OGTT for diagnosis.
OGTT stands for oral glucose tolerance test. Where a series of glucose drinks are given and the BG levels tested at 1 and 2 hours intervals.



Also see


http://www.netdoctor.co.uk/diseases/facts/diabetes.htm
· random glucose test: glucose levels are taken at a random time on two occasions. Any figure above 11.1mmol/l is a diagnosis of diabetes
· fasting glucose test: the glucose level is measured after an overnight fast and on two different days. Above 7.0mmol/l is a diagnosis of diabetes.

[mummyof4]

Hi there,
i belive that if holly has D then shes had it for a long time? it would explain sooo much of her past, i am going to keep and record of her readings and show them to the doctor when i see him. i do know about the A1c test and that it might not show somthing (but i'm hoping it will) (well of course i would rather she didn't have it but i'm sure she has) i am waiting on some more strips, i should get them tomorrow then going to keep an eye for a few days and then take them to the docs and just try and demand he refers her, i'm not sure what else i can do. the help here has been amazing and i don't think i would be at this stage with out everyones support? i proberly would have just listen to the doctors as i didn't know anything about it all and you would think they would know what they was talking about? well obviosly NOT :mad:
i will keep fighting untill they do the proper tests and if i'm wrong then thank god but if i'm right it could be a far worse out come...................... :(
this is why i wont give up because i would never forgive my self if in a few months years (or what every the case might be) she got ill, and i knew somthing was wrong and never done everything i could to fight for her? shes a few months off 3 bless her and she can only tell me so much, today she went to sleep and woke up crying saying her feet was hurting and asking me why there hurting and i couldn't give her an answer? she was in pain tho you could tell she was uncomfotable as she was kinda sitting on the sofa moving around and round trying to get rid of the pain? (i am assuming its pins and needles?) 5 mins later she was fine and running around again, this is not the first time it's happend i'm so worried for her if it's not D then i have no idea what this could be? as nothing else can rise the blood sugar levels :( xxxxx

[Hamtaro]

Honestly, this sounds so messed up. I believe what I would do is feed my child pancakes and syrup and orange juice etc. test the child’s blood sugar, and then if it was at least 15 mmol/L go to the emergency room, and just state there is a family history of diabetes my child has had frequent urination, and has been drinking heavily and her blood sugar is 15.
That is not intended as medical advice; I just feel that this is what I would do if I were forced into that kind of situation.

A fasting blood sugar of 17 is really quite high. I can only imagine what the child’s post meal blood sugars are like.

Many of the stories I hear about the UK health care system make it sound terrible.

I live in Canada, and I often feel like the system is mismanaged but I can’t even imagine something like this. A friend of the family had approximately the opposite situation and was also upset. She brought her son to the walk in clinic they found a small amount of glucose in his urine. Generally if you go to a walk in they use something like a ketone strips that tests for a number of things i.e. white blood cells, glucose, ketones, protein etc). They then proceed to call an ambulance, and instruct the hospital to follow the protocol for a new paediatric type 1. The hospital started saline IV on him and everything, only for the hospital staff to later conclude the child did not have diabetes, or elevated blood sugar, and has not developed it in the subsequent 4 or 5 years. The child may have in fact had ketones in his urine in addition to what must have been a very small amount of glucose. Granted a GP should know that healthy people can spill a small amount or glucose and even a large amount of ketones during times of illness and stress, but I would feel a lot better going to a doctor who lacked some knowledge but was smart enough to seek outside intervention in potentially dangerous situations.

It seems more like an emergency situation, but doesn’t she have the right to seek a second opinion and meet with a physician who will provide that second opinion.

If she is investing in blood glucose test strips, shouldn’t she get some ketone urine strips, glucose urine strips, and possibly blood ketone test strips? Since the names, and packages are probably different in the UK maybe someone else could instruct her on how to find them. Also, it is probably not helping any to focus on testing before she has eaten, or while fasting.

Also, when you buy a box of test strips and a meter in Canada. The meter company technically pays the pharmacy to teach you how to use it. If the pharmacy was to teach her how to use the meter on her daughter, and subsequently observe a high blood sugar couldn’t the pharmacist call someone who could offer help.

Honestly, people have sought refugee status over maltreatment less bad than what she is describing.

[Hamtaro]

Mummyof4 I bet the pain she was describing was a cramp, when you get type 1 diabetes it can cause the electrolyte levels (potassium is one example) in your blood to become low, you body then takes potassium from the muscle which causes the cramping.

If her blood sugar was truly 17 she definitely has diabetes, given her age it is almost certainly type 1. If it was actually before she ate that is more concerning, but regardless of whether she had in fact eaten before you tested it if her blood sugar was in fact 17 she has diabetes.


You should be able to purchase test strips that used to test the urine for ketones and glucose. They should be cheaper than the blood strips. Those results would be very informative.

A few questions - has she lost weight? Are there dark circles under her eyes or do her eyes looks sunken? Does her breath smell fruity, like nail polish remover, or like someone who has been drinking alcohol (even faintly) ?

Do you have friends or family who could help you out with lending you a meter, and some strips and some new lancets (the needles you use to poke the fingers.) when you do test again be certain to wash your child’s hands, or clean the finger with rubbing alcohol and wait for the alcohol to be completely dry before testing.

[mummyof4]

Honestly, this sounds so messed up. I believe what I would do is feed my child pancakes and syrup and orange juice etc. test the child’s blood sugar, and then if it was at least 15 mmol/L go to the emergency room, and just state there is a family history of diabetes my child has had frequent urination, and has been drinking heavily and her blood sugar is 15.
That is not intended as medical advice; I just feel that this is what I would do if I were forced into that kind of situation.

A fasting blood sugar of 17 is really quite high. I can only imagine what the child’s post meal blood sugars are like.

Many of the stories I hear about the UK health care system make it sound terrible.

I live in Canada, and I often feel like the system is mismanaged but I can’t even imagine something like this. A friend of the family had approximately the opposite situation and was also upset. She brought her son to the walk in clinic they found a small amount of glucose in his urine. Generally if you go to a walk in they use something like a ketone strips that tests for a number of things i.e. white blood cells, glucose, ketones, protein etc). They then proceed to call an ambulance, and instruct the hospital to follow the protocol for a new paediatric type 1. The hospital started saline IV on him and everything, only for the hospital staff to later conclude the child did not have diabetes, or elevated blood sugar, and has not developed it in the subsequent 4 or 5 years. The child may have in fact had ketones in his urine in addition to what must have been a very small amount of glucose. Granted a GP should know that healthy people can spill a small amount or glucose and even a large amount of ketones during times of illness and stress, but I would feel a lot better going to a doctor who lacked some knowledge but was smart enough to seek outside intervention in potentially dangerous situations.

It seems more like an emergency situation, but doesn’t she have the right to seek a second opinion and meet with a physician who will provide that second opinion.

If she is investing in blood glucose test strips, shouldn’t she get some ketone urine strips, glucose urine strips, and possibly blood ketone test strips? Since the names, and packages are probably different in the UK maybe someone else could instruct her on how to find them. Also, it is probably not helping any to focus on testing before she has eaten, or while fasting.

Also, when you buy a box of test strips and a meter in Canada. The meter company technically pays the pharmacy to teach you how to use it. If the pharmacy was to teach her how to use the meter on her daughter, and subsequently observe a high blood sugar couldn’t the pharmacist call someone who could offer help.

Honestly, people have sought refugee status over maltreatment less bad than what she is describing.

Hi there,
just wanted to say her fasting blood sugar was not 17?
i have had fastings i think around 7/8?
i have brought some ketone urine strips, and they have come up negative? but it's the high blood sugar levels after eating that are worrying me, also the other symptoms ie: weeing alot, drinking alot, eating alot, sleeping alot, sweating alot, pins and needles in her hands and feet (more her feet) also there is a history of D with in my familly. another thing i am not sure if i have mentiond? she cut her chin about 7 months ago and it aint healing? i was trying to look it up on the net and thats when i came across D and all her symptoms matched, and then when i started checking her blood sugar levels i was getting high readings. so i went to see the doctor and told him all of this and he responded that if she had D she would be very very ill but said he would test her blood anyway, and got a result of 3.4 he said someone with D would not have results this low and has not listend to anything i have said since? i tried calling him but he would not listen to anything i had to say, i went to the hospital who also done and blood sugar test and got a reading of 7.6 i belive and then went to another hospiatl who got 6.6
with these reading they are not entertaning anything say, i spoke to a specialist at the hospital over the phone who said she would be more than happy to see holly and do test but she needs to be referd? and so here i am as my doctor will not refer her :(

[mummyof4]

Mummyof4 I bet the pain she was describing was a cramp, when you get type 1 diabetes it can cause the electrolyte levels (potassium is one example) in your blood to become low, you body then takes potassium from the muscle which causes the cramping.

If her blood sugar was truly 17 she definitely has diabetes, given her age it is almost certainly type 1. If it was actually before she ate that is more concerning, but regardless of whether she had in fact eaten before you tested it if her blood sugar was in fact 17 she has diabetes.


You should be able to purchase test strips that used to test the urine for ketones and glucose. They should be cheaper than the blood strips. Those results would be very informative.

A few questions - has she lost weight? Are there dark circles under her eyes or do her eyes looks sunken? Does her breath smell fruity, like nail polish remover, or like someone who has been drinking alcohol (even faintly) ?

Do you have friends or family who could help you out with lending you a meter, and some strips and some new lancets (the needles you use to poke the fingers.) when you do test again be certain to wash your child’s hands, or clean the finger with rubbing alcohol and wait for the alcohol to be completely dry before testing.

she hasn't had a fasting reading of 17 but she has had a reading of 17, also 20.5 and 11.8
i have tested her urine and it was clear, my mum has brought me some more test strips but as she don't live near me she has had to post them i should recive them tomorrow, sometimes i suppose i do notice a very small amount of fruity smell on her breath but nothing really bad and it's not always like that?

[Jackie UK]

Hi there,
i belive that if holly has D then shes had it for a long time? it would explain sooo much of her past, i am going to keep and record of her readings and show them to the doctor when i see him. i do know about the A1c test and that it might not show somthing (but i'm hoping it will) (well of course i would rather she didn't have it but i'm sure she has) i am waiting on some more strips, i should get them tomorrow then going to keep an eye for a few days and then take them to the docs and just try and demand he refers her, i'm not sure what else i can do. the help here has been amazing and i don't think i would be at this stage with out everyones support? i proberly would have just listen to the doctors as i didn't know anything about it all and you would think they would know what they was talking about? well obviosly NOT :mad:
i will keep fighting untill they do the proper tests and if i'm wrong then thank god but if i'm right it could be a far worse out come...................... :(
this is why i wont give up because i would never forgive my self if in a few months years (or what every the case might be) she got ill, and i knew somthing was wrong and never done everything i could to fight for her? shes a few months off 3 bless her and she can only tell me so much, today she went to sleep and woke up crying saying her feet was hurting and asking me why there hurting and i couldn't give her an answer? she was in pain tho you could tell she was uncomfotable as she was kinda sitting on the sofa moving around and round trying to get rid of the pain? (i am assuming its pins and needles?) 5 mins later she was fine and running around again, this is not the first time it's happend i'm so worried for her if it's not D then i have no idea what this could be? as nothing else can rise the blood sugar levels :( xxxxx


Hi Tracy

You have probably picked up so much about diabetes by now, that there is not much more anyone can tell you at this stage and of course it is possible that Holly has had diabetes for a long time.

It is rare, but not that rare, that a diagnosis can be missed for a long time.
A couple of years ago a mum with a 12-year-old daughter joined the UK parents emailing list. Her daughter was only finally diagnosed with diabetes because they visited the optician because her daughter was having a lot of eye problems. The optician was very concerned because the girl had developed cataracts and type 1 diabetes was later diagnosed. She has the eye problem successfully treated and of course insulin therapy. It turned out that when the mother enquired into the records held by the GP surgery, that urine tests had come back with high levels of glucose, but no one had ever come back to the family and told them of this. The girl had been having the usual diabetes symptoms for some years. There was over a year between the positive glucose urine tests and they girl finally being diagnosed. Now I am not suggesting that Holly will have developed any sort of complications or eye problems at this stage. This is very unlikely and rare. I only tell you to illustrate that it is possible, as you fear, for a child to have diabetes for a long time before diagnosis.

One of the parents on the UK parents email list has begun to compile a list of Diagnosis stories, especially the stories where children have become extremely ill and have been turned away by a disbelieving doctor.

The stories will be compiled and handed someone like JDRF or DUK to see if they can generate a lot more awareness about diabetes.

If your daughter becomes worse look out for these symptoms and take her to A&E.

I am sure that you have probably read everything there is to read by now. But just in case anyone else is out there with a similar worry.
· Emesis (vomiting), although this is not always a sign of late-stage ketoacidosis, and can occur both in early-stage ketoacidosis and in non-ketoacidic hyperglycaemia.
· Confusion.
· Abdominal pain.
· Loss of appetite.
· Flu-like symptoms.
· Lethargy and apathy.
· Extreme weakness.
· Kussmaul breathing ("air hunger"). A type of hyperventilation where patients breathe very deeply at a normal or reduced rate. This is a sign of severe acidosis.
· Unconsciousness (a variety of diabetic coma) after prolonged DKA. At this stage, speedy medical attention is imperative.

Let us know what happens tomorrow, as we will all be worrying about you and Holly. Its not easy on your own not having another voice to back you up.

[mummyof4]

Hi Tracy

You have probably picked up so much about diabetes by now, that there is not much more anyone can tell you at this stage and of course it is possible that Holly has had diabetes for a long time.

It is rare, but not that rare, that a diagnosis can be missed for a long time.
A couple of years ago a mum with a 12-year-old daughter joined the UK parents emailing list. Her daughter was only finally diagnosed with diabetes because they visited the optician because her daughter was having a lot of eye problems. The optician was very concerned because the girl had developed cataracts and type 1 diabetes was later diagnosed. She has the eye problem successfully treated and of course insulin therapy. It turned out that when the mother enquired into the records held by the GP surgery, that urine tests had come back with high levels of glucose, but no one had ever come back to the family and told them of this. The girl had been having the usual diabetes symptoms for some years. There was over a year between the positive glucose urine tests and they girl finally being diagnosed. Now I am not suggesting that Holly will have developed any sort of complications or eye problems at this stage. This is very unlikely and rare. I only tell you to illustrate that it is possible, as you fear, for a child to have diabetes for a long time before diagnosis.

One of the parents on the UK parents email list has begun to compile a list of Diagnosis stories, especially the stories where children have become extremely ill and have been turned away by a disbelieving doctor.

The stories will be compiled and handed someone like JDRF or DUK to see if they can generate a lot more awareness about diabetes.

If your daughter becomes worse look out for these symptoms and take her to A&E.

I am sure that you have probably read everything there is to read by now. But just in case anyone else is out there with a similar worry.
· Emesis (vomiting), although this is not always a sign of late-stage ketoacidosis, and can occur both in early-stage ketoacidosis and in non-ketoacidic hyperglycaemia.
· Confusion.
· Abdominal pain.
· Loss of appetite.
· Flu-like symptoms.
· Lethargy and apathy.
· Extreme weakness.
· Kussmaul breathing ("air hunger"). A type of hyperventilation where patients breathe very deeply at a normal or reduced rate. This is a sign of severe acidosis.
· Unconsciousness (a variety of diabetic coma) after prolonged DKA. At this stage, speedy medical attention is imperative.

Let us know what happens tomorrow, as we will all be worrying about you and Holly. Its not easy on your own not having another voice to back you up.

Thanks hun,
i have not stoped on this computer trying to figer out if i'm over reacting or if it's possible she could have somthing else? (trying to be my own doctor) :(
i think i have read everything possible twice over it's going around and around in my head all the time and i am watching her like a hawk................
i'm very tired tho and finding it hard to keep fighting with the doctors, not one person on here has said to me i think your over reacting? and don't know why the doctor is acting like this? if it turns out in the end she has got D then i suggest he finds a good lawyer becuase i will NOT let him get away with the way we have been treated :mad:

[Hamtaro]

I think you could make a complaint through the Royal College of Physicians.

The information is here

http://www.rcplondon.ac.uk/information/Pages/Complaints-Procedure.aspx

If you make a complain using this method it forces the doctor respond to the issue himself, investing time in writing down his side of the story and dealing with the issue. He may just decide it is easier to actually address your issue rather than answer to a complaint.

[Hamtaro]

A formal complaint can be made only after an informal complaint has not resolved a situation. Formal complaints must be made in writing to the Director of External Affairs by email, fax or letter.

When making a formal complaint, please provide the following information:

Your name
Your postal or email address
The nature of your complaint
What has/has not been done
Why you are not satisfied with what has/has not been done
How you would like the matter resolved
Any information you send to us will be used only for the investigation of your complaint.

You should send your complaint:

By email: complaints@rcplondon.ac.uk

By post: Director of External Affairs
Royal College of Physicians
11 St Andrews Place
London
NW1 4LE

By fax: +44 (0)20 7486 3729

[Hamtaro]

you have to first make an informal complaint


How to make an informal complaint
Whenever possible, complaints will be dealt with informally. Informal complaints can be made by telephone or in writing by email, fax or letter to the manager of the department involved.

Managers and senior staff are listed on the College web site. Please ask the College's Information Centre for advice if you are not sure which manager to contact.

If you are not satisfied with the outcome after making an informal complaint then you can make a formal complaint.

Managers and senior staff [link to RCP page]
Information Centre

[mummyof4]

you have to first make an informal complaint


How to make an informal complaint
Whenever possible, complaints will be dealt with informally. Informal complaints can be made by telephone or in writing by email, fax or letter to the manager of the department involved.

Managers and senior staff are listed on the College web site. Please ask the College's Information Centre for advice if you are not sure which manager to contact.

If you are not satisfied with the outcome after making an informal complaint then you can make a formal complaint.

Managers and senior staff [link to RCP page]
Information Centre

Thanks hun,
this is somthing i will be looking into after i have sorted out my daughter xxxx

[mummyof4]

Mummyof4 I bet the pain she was describing was a cramp, when you get type 1 diabetes it can cause the electrolyte levels (potassium is one example) in your blood to become low, you body then takes potassium from the muscle which causes the cramping.

If her blood sugar was truly 17 she definitely has diabetes, given her age it is almost certainly type 1. If it was actually before she ate that is more concerning, but regardless of whether she had in fact eaten before you tested it if her blood sugar was in fact 17 she has diabetes.


You should be able to purchase test strips that used to test the urine for ketones and glucose. They should be cheaper than the blood strips. Those results would be very informative.

A few questions - has she lost weight? Are there dark circles under her eyes or do her eyes looks sunken? Does her breath smell fruity, like nail polish remover, or like someone who has been drinking alcohol (even faintly) ?

Do you have friends or family who could help you out with lending you a meter, and some strips and some new lancets (the needles you use to poke the fingers.) when you do test again be certain to wash your child’s hands, or clean the finger with rubbing alcohol and wait for the alcohol to be completely dry before testing.
Sorry can i just ask? is the cramping common with kids with D then? once when we was on holiday she was ill, and i couldn't work out what was wrong so i called the first aid and he came to see her, he said that she wasn't breathing properly and called an ambulace. when the paramedic was looking at holly he could see that she was breathing quite fast but couldn't find any reason for it and said it was best to take her to the hospiatl anyway he went to put her on the floor to walk to me and she started screaming and holding her legs? but he just looked at me as if to say he had no idea what that was all about and maybe it's just pins and needles? well we took her to hospital and they put her on steroids and oxigen (that was just over a year ago) do you think that could have been somthing to do with now and i just didn't relize? xxxx

[Hamtaro]

Anyone can get that kind of cramping, some people say you should eat a banana when it happens. If you were otherwise healthy it may just be a matter of improving your diet, and possibly getting your electrolytes tested. If it is related to undiagnosed type 1 it is because you are basically starving, and very dehydrated. Your body has to use protein and fat as an energy source which means that you are in a state of homeostatic imbalance.

I had 2 symptoms prior to being diagnosed that are not common, or people don’t usually mention them as diabetes symptoms extreme constipation, and the leg cramps, which were really bad. I would wake up in the middle of the night with intense pain in my lower limbs and have to go fill the bathtub and sit in hot water just to make the pain stop.

[Hamtaro]

I was reading back and I think you need to clarify about the cystic fibrosis issue more than anything else. When you say borderline CF, all I can think of is a borderline sweat test result. If your daughter had a borderline sweat, she needs to have a second sweat test. The test may come out positive, borderline, or negative the second time. If it is positive she likely has cystic fibrosis, they may want to do genetic testing to she if she is positive for 2 of the CF genes need to conform a diagnosis, if she is borderline she also needs the genetic testing done. It is a bit confusing because a person may have CF and sill not test positive in the genetic test because scientists don’t have a method to test for approximately 10-20 percent of the genes. If you had a more than one borderline sweat test and a negative genetic test, or a positive sweat test and negative genetic test the doctor would base the treatment on the child’s symptoms.

Cystic fibrosis is very serious, and sometimes causes what they call cystic fibrosis related diabetes. CF is a very complicated illness and there is a lot of variation from person to person.

You need to clarify what is going on in terms of a CF diagnosis with your daughter, since you were informed of the potential that she has CF. If you were informed she has boarderline cystic fibrosis, and that is the term they used you need to document that because there is no condition with that name. It would be the same as if a doctor told you that you were borderline pregnant.

[Jackie UK]

Sorry can i just ask? is the cramping common with kids with D then? once when we was on holiday she was ill, and i couldn't work out what was wrong so i called the first aid and he came to see her, he said that she wasn't breathing properly and called an ambulace. when the paramedic was looking at holly he could see that she was breathing quite fast but couldn't find any reason for it and said it was best to take her to the hospiatl anyway he went to put her on the floor to walk to me and she started screaming and holding her legs? but he just looked at me as if to say he had no idea what that was all about and maybe it's just pins and needles? well we took her to hospital and they put her on steroids and oxigen (that was just over a year ago) do you think that could have been somthing to do with now and i just didn't relize? xxxx

Hi Tracey


Some of the parents on the list have had their child's diabetes symptoms misdiagnosed as a chest infection due the the breathing problems, but these usually happen when a child is very ill and the diabetes advanced. But one cannot rule out the possibility that this episode wasnt was not Kussmaul breathing. Was your daughter given antibiotics as well? How long ago was this? I know is possible for symptoms to come and go sometimes.

Have your supply of strips for the meter arrived today?

With Sasha, her symptoms went on for months before I realised that she probably had diabetes. With no family members it's not always something you think (and most people with type 1 diabetes do not have family members with the condition) and also her symptoms very vague and different. Sometimes tummy aches and vomiting, then she appeared to be fine again. Then she had several severe ear infection which wouldn get better. She didnt have thrush though which is one of the common symtoms I didnt even notice any excessive drinking or going to the toilet. Being four year old she obviously took herself to the toilet and there were no wet beds. The first time I realised she might have diabetes when she cried hysterically for a drink was the day before diagnosis. Her BG level was off the scale. So it just shows that even in presentation symptoms can vary and come and go.

Has your daughter lost wieght?






http://books.google.co.uk/books?id=5zoewWKDidEC&pg=PA43&lpg=PA43&dq=Kussmaul+Breathing+diagnosis+of+diabetes&source=web&ots=NMkcGKnDXK&sig=jLlAZhEHWjEja-5aWGS8wxzwkMY&hl=en&sa=X&oi=book_result&resnum=5&ct=result#PPA43,M1

[Jackie UK]

Anyone can get that kind of cramping, some people say you should eat a banana when it happens. If you were otherwise healthy it may just be a matter of improving your diet, and possibly getting your electrolytes tested. If it is related to undiagnosed type 1 it is because you are basically starving, and very dehydrated. Your body has to use protein and fat as an energy source which means that you are in a state of homeostatic imbalance.

I had 2 symptoms prior to being diagnosed that are not common, or people don’t usually mention them as diabetes symptoms extreme constipation, and the leg cramps, which were really bad. I would wake up in the middle of the night with intense pain in my lower limbs and have to go fill the bathtub and sit in hot water just to make the pain stop.



It sounds like follow up tests have never been done and as you say children with CF can develop diabetes but the age of on-set of cystic fibrosis related diabetes is usually in the teens and due to the effect of living with CF for a long time. However it sounds like tests for CF need to be done anyway as well as properly conducted tests for Diabetes.

[mummyof4]

I was reading back and I think you need to clarify about the cystic fibrosis issue more than anything else. When you say borderline CF, all I can think of is a borderline sweat test result. If your daughter had a borderline sweat, she needs to have a second sweat test. The test may come out positive, borderline, or negative the second time. If it is positive she likely has cystic fibrosis, they may want to do genetic testing to she if she is positive for 2 of the CF genes need to conform a diagnosis, if she is borderline she also needs the genetic testing done. It is a bit confusing because a person may have CF and sill not test positive in the genetic test because scientists don’t have a method to test for approximately 10-20 percent of the genes. If you had a more than one borderline sweat test and a negative genetic test, or a positive sweat test and negative genetic test the doctor would base the treatment on the child’s symptoms.

Cystic fibrosis is very serious, and sometimes causes what they call cystic fibrosis related diabetes. CF is a very complicated illness and there is a lot of variation from person to person.

You need to clarify what is going on in terms of a CF diagnosis with your daughter, since you were informed of the potential that she has CF. If you were informed she has boarderline cystic fibrosis, and that is the term they used you need to document that because there is no condition with that name. It would be the same as if a doctor told you that you were borderline pregnant.

She had a borderline result as in 0 to 40 is negative 40 to 60 is borderline and 60 above is positive and her results were 43, the consultant has sent off some bloods but some of them were unusable (i am not sure why she said somthing about chrushed red blood cells) one of the bloods was for CF my doctor said he is confident that she don't have CF the reason why i think they thought this in the first place was because wheb she was a baby she kept losing weight had dirrear that was very sticky and smelly (she still has) also alot of chest infections ear infections ect ect she is alot better than she was back then but still not completly right, she still has the dirrear and gets ill all the time when ever theres somthing going around she will get it. at one point and the begining of this year she had a chest infectiona an ear infection sickness and dirrer and tonsillitis all in one go :(
at the moment her she aint loseing weight but not really putting tones on in 4months she has put on 2oz shes not overly skiny she has a little pop belly (bless her lol) but shes not big at all xx

[mummyof4]

my post man comes around 10am :cwds:

[mummyof4]

Hi Tracey


Some of the parents on the list have had their child's diabetes symptoms misdiagnosed as a chest infection due the the breathing problems, but these usually happen when a child is very ill and the diabetes advanced. But one cannot rule out the possibility that this episode wasnt was not Kussmaul breathing. Was your daughter given antibiotics as well? How long ago was this? I know is possible for symptoms to come and go sometimes.

Have your supply of strips for the meter arrived today?

With Sasha, her symptoms went on for months before I realised that she probably had diabetes. With no family members it's not always something you think (and most people with type 1 diabetes do not have family members with the condition) and also her symptoms very vague and different. Sometimes tummy aches and vomiting, then she appeared to be fine again. Then she had several severe ear infection which wouldn get better. She didnt have thrush though which is one of the common symtoms I didnt even notice any excessive drinking or going to the toilet. Being four year old she obviously took herself to the toilet and there were no wet beds. The first time I realised she might have diabetes when she cried hysterically for a drink was the day before diagnosis. Her BG level was off the scale. So it just shows that even in presentation symptoms can vary and come and go.

Has your daughter lost wieght?






http://books.google.co.uk/books?id=5zoewWKDidEC&pg=PA43&lpg=PA43&dq=Kussmaul+Breathing+diagnosis+of+diabetes&source=web&ots=NMkcGKnDXK&sig=jLlAZhEHWjEja-5aWGS8wxzwkMY&hl=en&sa=X&oi=book_result&resnum=5&ct=result#PPA43,M1

Sorry missed an answer there, this happend in october last year i can't remember if she was put on antibiotics? but she was put on steriod tablets and had to take 1 a day i belive?

[Jackie UK]

She had a borderline result as in 0 to 40 is negative 40 to 60 is borderline and 60 above is positive and her results were 43, the consultant has sent off some bloods but some of them were unusable (i am not sure why she said somthing about chrushed red blood cells) one of the bloods was for CF my doctor said he is confident that she don't have CF the reason why i think they thought this in the first place was because wheb she was a baby she kept losing weight had dirrear that was very sticky and smelly (she still has) also alot of chest infections ear infections ect ect she is alot better than she was back then but still not completly right, she still has the dirrear and gets ill all the time when ever theres somthing going around she will get it. at one point and the begining of this year she had a chest infectiona an ear infection sickness and dirrer and tonsillitis all in one go :(
at the moment her she aint loseing weight but not really putting tones on in 4months she has put on 2oz shes not overly skiny she has a little pop belly (bless her lol) but shes not big at all xx

I know from previous posts that you have mentioned coeliac. Or someone else has mentioned this to you. A lot of her symtoms you mention could be those of coeliac which is often found in people with type 1 diabetes. The genes are the link.

When your daughter finally gets seen by a doctor and tested for diabetes then she should automatically be tested for coeliac if she has diabetes.

Coeliac damages the lining of the gut and make the absorbtion of food poor causing all sort of problems. Also if a child has coeliac they might well have low blood glucose levels at times after eating because of the poor absorbtion. Coeliac can cause the pins and needles and pains you describe.
You can get a home testing kit but I am not sure how reliable this is on younger children and also. your GP should be arranging test and not you. If your daughter has coeliac she should continue to eat a diet containing gluten until after tests have been done otherwise blood test revert to negative and then you will not get a definative diagnosis.

I defiantely think that you should be able to get someone to take notice of the gastro symptoms and the pot belly alone, leaving aside the random high BG levels

[mummyof4]

I know from previous posts that you have mentioned coeliac. Or someone else has mentioned this to you. A lot of her symtoms you mention could be those of coeliac which is often found in people with type 1 diabetes. The genes are the link.

When your daughter finally gets seen by a doctor and tested for diabetes then she should automatically be tested for coeliac if she has diabetes.

Coeliac damages the lining of the gut and make the absorbtion of food poor causing all sort of problems. Also if a child has coeliac they might well have low blood glucose levels at times after eating because of the poor absorbtion. Coeliac can cause the pins and needles and pains you describe.
You can get a home testing kit but I am not sure how reliable this is on younger children and also. your GP should be arranging test and not you. If your daughter has coeliac she should continue to eat a diet containing gluten until after tests have been done otherwise blood test revert to negative and then you will not get a definative diagnosis.

I defiantely think that you should be able to get someone to take notice of the gastro symptoms and the pot belly alone, leaving aside the random high BG levels

Yes somone has mentioned this to me but i was a little worried about going to the doctor about this and i have been buggin him about D and now if i go in with somthing else i am worried that he will not take this the right way? thats why i am still trying to get her referd about D and if it's positive or negative they will do more test? does that make sence? xx

[mummyof4]

Seeing a consultant


You have no right to see a consultant or a particular doctor, although this can be requested. Your GP cannot insist that you see a particular consultant or doctor. You do have the right to see a doctor competent to deal with your case.

(just seen this on a web page :( )

[mummyof4]

Got holly's A1c results this morning and they was normal as we expected 5.4

[Jackie UK]

Got holly's A1c results this morning and they was normal as we expected 5.4

Sorry to hear you are no further forward. Obviously this HbA1c does not rule out diabetes because as we know in the early stages in honeymoon the pancreas may produce enough insulin.

Carry on testing the BG levels after a high carb load, again make sure that hands are washed and dried. Then make a note of days and times, When eaten etc and see what you get.

Let us know how you get on.

[mummyof4]

Yes i am going to keep a weeks log and see what i get, see if i can see any pattern ect. then if i have enough going to take it back to the doctor and see if he will take any notice? i know that the A1c don't rule out D but it's still a good result, if she does have D then hopfully with 5.4 shes not in any real danger right now? (is that right?) xxx

[mummyof4]

Can i please ask a question? (sorry if i'm being a pain?)
what does DCCT aligned mean? (it says under that)


"Please note that at present UK laboratories are predominantly reporting results that are DCCT-aligned. you should check that the results normally used to monitor you/this person's level of glycaemic control are DCCT-aligned as a small number of laboratories are reporting results that are not aligned to DCCT."

does this mean anything? or is it just what they write? i don't really understand it?

Thnaks xxxx :confused:

[Hamtaro]

It means that the way they calculate what a haemoglobin A1C means in terms of the average blood glucose it equates to is based on data from the diabetes complication and control trial (DCCT). This is more applicable to people who currently have diabetes are trying to gage how good of metabolic control they have, and if there diabetes regimen is effective. The diabetes complication and control trial was a detailed longitudinal study that concluded that when people with type 1 diabetes kept their haemoglobin a1c below 7.0 it significantly decreased their risk of developing many types of diabetes complications.


The comment about DCCT may be cautioning people that although 6.9 or below is considered optimal for a person with diabetes, the target A1C may vary from person to person

[mummyof4]

It means that the way they calculate what a haemoglobin A1C means in terms of the average blood glucose it equates to is based on data from the diabetes complication and control trial (DCCT). This is more applicable to people who currently have diabetes are trying to gage how good of metabolic control they have, and if there diabetes regimen is effective. The diabetes complication and control trial was a detailed longitudinal study that concluded that when people with type 1 diabetes kept their haemoglobin a1c below 7.0 it significantly decreased their risk of developing many types of diabetes complications.


The comment about DCCT may be cautioning people that although 6.9 or below is considered optimal for a person with diabetes, the target A1C may vary from person to person

Oh ok then that makes sence, i didn't think it ment anything but just wanted to check thanks :) x

[Jackie UK]

Yes i am going to keep a weeks log and see what i get, see if i can see any pattern ect. then if i have enough going to take it back to the doctor and see if he will take any notice? i know that the A1c don't rule out D but it's still a good result, if she does have D then hopfully with 5.4 shes not in any real danger right now? (is that right?) xxx
Hi Tracey


The most important thing for you to remember is that her HbA1c is good, so if she does have diabetes then she is not running high BG levels for very long. Which is what you might expect in a very early presentation of diabetes. So in the short term you can stop worrying that she is running high a lot of the time and that lots of damage is happening.

Continue to do what you are doing with the BG testing and keeping a record.

You might want to read here what an oral tolerance glucose test (OGTT) is. Though when they are done in a clinical setting blood taken is usually a venous sample (blood from a vein in the crook of the arm or back of the hand) however blood taken from a fingertip test should also give a good indication if there is anything wrong.

http://www.diabetes.org.uk/en/About_us/Our_Views/Care_recommendations/New_diagnostic_criteria_for_diabetes_/

I have seen a home OGTT in Boots presumably you take finger stick reading for this one. But I would have thought that monitoring over some days and testing after high carb drinks would show something up.


It is also possible that your daughter may be ok for a while and then the BG level may start to rise again if she gets a cold or virus. I know that Sasha was unwell at time over a period of over 6 months before suddenly getting worse. So its possible that during those 6 months at times Sasha's BG levels were normal.

Whatever happens, if it turns out that your daughter does not have diabetes the doctor was and is very wrong not to have taken your concerns seriously and referred your daughter to someone to help find out the cause of her symptoms. You are doing the right thing. I have to fight one GP to get a referral to hospital for one of my daughter who had a blocked bowel and could have died if she hadn’t been eventually referred by another doctors operated on quickly. The same daughter was sent away from the hospital 3 times for another medical condition which the GP had diagnosed but which they said my daughter didn’t have because she didn’t fit the profile.

So doctors can make misjudgements and mistakes

[mummyof4]

Hi Tracey


The most important thing for you to remember is that her HbA1c is good, so if she does have diabetes then she is not running high BG levels for very long. Which is what you might expect in a very early presentation of diabetes. So in the short term you can stop worrying that she is running high a lot of the time and that lots of damage is happening.

Continue to do what you are doing with the BG testing and keeping a record.

You might want to read here what an oral tolerance glucose test (OGTT) is. Though when they are done in a clinical setting blood taken is usually a venous sample (blood from a vein in the crook of the arm or back of the hand) however blood taken from a fingertip test should also give a good indication if there is anything wrong.

http://www.diabetes.org.uk/en/About_us/Our_Views/Care_recommendations/New_diagnostic_criteria_for_diabetes_/

I have seen a home OGTT in Boots presumably you take finger stick reading for this one. But I would have thought that monitoring over some days and testing after high carb drinks would show something up.


It is also possible that your daughter may be ok for a while and then the BG level may start to rise again if she gets a cold or virus. I know that Sasha was unwell at time over a period of over 6 months before suddenly getting worse. So its possible that during those 6 months at times Sasha's BG levels were normal.

Whatever happens, if it turns out that your daughter does not have diabetes the doctor was and is very wrong not to have taken your concerns seriously and referred your daughter to someone to help find out the cause of her symptoms. You are doing the right thing. I have to fight one GP to get a referral to hospital for one of my daughter who had a blocked bowel and could have died if she hadn’t been eventually referred by another doctors operated on quickly. The same daughter was sent away from the hospital 3 times for another medical condition which the GP had diagnosed but which they said my daughter didn’t have because she didn’t fit the profile.

So doctors can make misjudgements and mistakes

I know hun thats why i still want to keep an eye on her, been testing since last night and had nothing above 8.1 going to test her again in a min having a late lunch.

i was thinking of trying to do a oral tolerance glucose test at home i mean it can't hurt can it? and then see what the results are and then i will know if i have anything to worry about, just going to keep monitoring her my self i will let you know how i get on xxx

[mummyof4]

Ok holly just had beans on toast (somthing easy as i have the flu :( ) lol
i checked her 10 mins after and she's 12.5
i will check her again how long do you think i should leave it before i check her again?

[Jackie UK]

Ok holly just had beans on toast (somthing easy as i have the flu :( ) lol
i checked her 10 mins after and she's 12.5
i will check her again how long do you think i should leave it before i check her again?
Hi I have been out,so no doubt a bit late now. I would test at one hour after meals and again at two hours. Bear in mind its probably not worth doing it everyday or after every meal at the moment. 12.5 is not a normal reading so something is going on. Though of course to get a proper diagnosis when there is doubt a hospital should do other tests. You know what the signs are when things are starting to get worse. Did you ever email DUK? did they reply?

I think its likely you may even get days of almost normal levels at times and it may be that even if Holly had been diagnosed she would only need tiny amounts of insulin at present. If you cant persuade another doctor to refer her at the moment just keep doing a few random tests after meals. Then its likely that that you will start to see more raised levels. Glucose only starts going into the urine when the blood glucose level is over 10 mmols or sometimes higher so negative urine test is still likely. It seems bizarre to be telling you theses things because medical professionals are refusing to help you. I know that she probably isn’t very poorly at the moment but if things get worse you must try and insist that someone investigates further.

[mummyof4]

Hi I have been out,so no doubt a bit late now. I would test at one hour after meals and again at two hours. Bear in mind its probably not worth doing it everyday or after every meal at the moment. 12.5 is not a normal reading so something is going on. Though of course to get a proper diagnosis when there is doubt a hospital should do other tests. You know what the signs are when things are starting to get worse. Did you ever email DUK? did they reply?

I think its likely you may even get days of almost normal levels at times and it may be that even if Holly had been diagnosed she would only need tiny amounts of insulin at present. If you cant persuade another doctor to refer her at the moment just keep doing a few random tests after meals. Then its likely that that you will start to see more raised levels. Glucose only starts going into the urine when the blood glucose level is over 10 mmols or sometimes higher so negative urine test is still likely. It seems bizarre to be telling you theses things because medical professionals are refusing to help you. I know that she probably isn’t very poorly at the moment but if things get worse you must try and insist that someone investigates further.

Hi there no problems i tested her again 45mins after and she had gone back down to a normal range, is it normal for it to go back down that quickly?
i know the sighs and symptoms to look out for and if i notice her getting ill then i will not being talking no for an answer.
i think thats all i can do for now, is just keep and eye out and do randon test thanks again xx

[Jackie UK]

Hi there no problems i tested her again 45mins after and she had gone back down to a normal range, is it normal for it to go back down that quickly?
i know the sighs and symptoms to look out for and if i notice her getting ill then i will not being talking no for an answer.
i think thats all i can do for now, is just keep and eye out and do randon test thanks again xx

Hi Tracey

I might be worth looking at these links if you havent seen them already

http://www.childrenwithdiabetes.com/dteam/2007-12/d_0d_ezc.htm

http://www.childrenwithdiabetes.com/dteam/2007-10/d_0d_evh.htm

[mummyof4]

Hi Tracey

I might be worth looking at these links if you havent seen them already

http://www.childrenwithdiabetes.com/dteam/2007-12/d_0d_ezc.htm

http://www.childrenwithdiabetes.com/dteam/2007-10/d_0d_evh.htm

Wow, both them story's sound like holly i'm not the only one with this problem then?
i feel the same as them mothers right now why should i have to wait untill she becomes really ill before they would do somthing? it's just not right?
i totaly belive she has D as i have been told that there is no other reason as to why she would have such high readings. (apart from steroids but shes not on them)
i am going to try her with diffrent things as see what brings her sugar levels up the most and see if i can get the doctor to see these high readings if i can then hopfully he will listen to me? do you think?
i am so tired of this right now and it's costing me a fortune with the strips £25
for 50 why are they so expensive?
i hope it don't get to the point where she has to be really ill before they take notice as i couldn't bear to see my child like that as i'm sure no other mother would :(

[Jackie UK]

Wow, both them story's sound like holly i'm not the only one with this problem then?
i feel the same as them mothers right now why should i have to wait untill she becomes really ill before they would do somthing? it's just not right?
i totaly belive she has D as i have been told that there is no other reason as to why she would have such high readings. (apart from steroids but shes not on them)
i am going to try her with diffrent things as see what brings her sugar levels up the most and see if i can get the doctor to see these high readings if i can then hopfully he will listen to me? do you think?
i am so tired of this right now and it's costing me a fortune with the strips £25
for 50 why are they so expensive?
i hope it don't get to the point where she has to be really ill before they take notice as i couldn't bear to see my child like that as i'm sure no other mother would :(


Remind me which meter you have and what the strips are. I'll see if anyone on the UK CWD list has any spare they can send you. I remember the meter not being the same as the ones we use

[mummyof4]

I have 2 meters accu-chek and the onetouch ultra easy.
that would be really appreciated if you could do that thank-you very much xxx

[Alba37]

Just read the stories, gosh they are so smiliar to yours Tracy. They were both about a year ago, I wonder what the outcome was...

Is the utlra easy the long thinish one?

I can send you a box of one touch ultra strips.

If you want them PM me your address. I'll get them off as soon as I can.

A x

[Jackie UK]

I have 2 meters accu-chek and the onetouch ultra easy.
that would be really appreciated if you could do that thank-you very much xxx

If you private message me, send me your address I will also send you some strips, as we do use Freestyle mini but also use a One Touch Meter as well.

Jackie

[Alba37]

Watching the youtube video just now, Jackie. It's really informative, thanks.

[mummyof4]

Just read the stories, gosh they are so smiliar to yours Tracy. They were both about a year ago, I wonder what the outcome was...

Is the utlra easy the long thinish one?

I can send you a box of one touch ultra strips.

If you want them PM me your address. I'll get them off as soon as I can.

A x

I was thinking the same thing? i wonder if theres anyway we can find out what happend?
i will pm you thank-you so much xxxx

[mummyof4]

Watching the youtube video just now, Jackie. It's really informative, thanks.

Sorry what youtube video is that? xx

[Alba37]

It's about pumps, Jackie emailed the link her on mailing list. Just Marc might be eligible for a pump and I know very little about them, it was very informative. (sorry I went off topic!)

A x

[mummyof4]

Oh no problem hun, i thought i missed somthing intresting lol ;)

[Jackie UK]

Oh no problem hun, i thought i missed somthing intresting lol ;)

I Tracey

I posted a link about insulin pumps on the UK parents emailing list. Which is a bit different to a message board.


This is it
http://uk.youtube.com/watch?v=5h37vJS6qF0

Dr. Steven Edelman discusses how insulin pump therapy works, who can benefit
> from using an insulin pump, and common concerns people have before starting.
> Series: "Taking Control of Your Diabetes" [3/2008] [Health and Medicine] [Show
> ID: 14226] «Dr. Steven Edelman discusses how insulin pump therapy works
>



This was the link about insulin pumps but its probably not something that you need be "into" for a long time, even if Holly is found to have diabetes. Its another way of delivering insulin instead of injections. not really an easier option but give some people better BG control.

[mummyof4]

I Tracey

I posted a link about insulin pumps on the UK parents emailing list. Which is a bit different to a message board.


This is it
http://uk.youtube.com/watch?v=5h37vJS6qF0

Dr. Steven Edelman discusses how insulin pump therapy works, who can benefit
> from using an insulin pump, and common concerns people have before starting.
> Series: "Taking Control of Your Diabetes" [3/2008] [Health and Medicine] [Show
> ID: 14226] «Dr. Steven Edelman discusses how insulin pump therapy works
>



This was the link about insulin pumps but its probably not something that you need be "into" for a long time, even if Holly is found to have diabetes. Its another way of delivering insulin instead of injections. not really an easier option but give some people better BG control.

Thats one thing i am not sure i could get my head around? i find it hard enough with the finger prick :( i don't know how you all do it? it must be so hard to live with? but you have to do what you have to do i suppose....... :(

[Alba37]

I think I was lucky as Marc was 13 when he was diagnosed. I just can't imagine how terrible it must be for a baby or toddler.

Definitely don't worry about injections etc just now. Just take it a step at a time.

If it turns out Holly is diabetic you'll get so much help and support from members in Jackie's email list.

A x

[mummyof4]

I think I was lucky as Marc was 13 when he was diagnosed. I just can't imagine how terrible it must be for a baby or toddler.

Definitely don't worry about injections etc just now. Just take it a step at a time.

If it turns out Holly is diabetic you'll get so much help and support from members in Jackie's email list.

A x

No, i aint worrying about that for now and hopfully i never will have too :)
i just can't ever imagen what it must be like for you all, i don't think you really understand about stuff like this untill it affects you. i always thought D was like asthma or somthing like that but it goes alot deeper than that, i have read so much over the last few weeks and some of the stuff sounds so complicated it must be so hard to live with, and must make it harder that alot of people just don't understand D. :cwds:

[mummyof4]

Ok somthing really aint right here, holly has been asleep for about 4 hours had toast at about 8am then went to sleep around 10am she has just woken up feeling dizzy, crying and just not all there? i checked her blood sugar levels and they were 3.0 is that normal in a non diabetic to get such a low reading? i gave her some milk and more toast and shes now gone back up to a normal level of 6.9

[Alba37]

I'm really not sure about this, but you're right, something isn't right.

I really don't know enough about this, I would phone NHS 24 again, if I were you. Atleast they can tell you if it's normal for a child to go down to 3.

A x

[mummyof4]

I'm really not sure about this, but you're right, something isn't right.

I really don't know enough about this, I would phone NHS 24 again, if I were you. Atleast they can tell you if it's normal for a child to go down to 3.

A x

The problem is they will proberly tell me to take her A&E (like they always do) and they wont do anything as shes fine now? blood sugars are back to normal and she seems fine in her self again x

[Alba37]

Yes, that's true. I'm just worried that something else isn't right. Hopefully someone else will come along and give us more information.

A x

[mummyof4]

I will post the Q on my other one too, theres lots more people on that one :cwds: xx

[Jackie UK]

Ok somthing really aint right here, holly has been asleep for about 4 hours had toast at about 8am then went to sleep around 10am she has just woken up feeling dizzy, crying and just not all there? i checked her blood sugar levels and they were 3.0 is that normal in a non diabetic to get such a low reading? i gave her some milk and more toast and shes now gone back up to a normal level of 6.9

Hi Tracy

Before diabetes begins, sometimes there is a funny period where the pancreas actually makes too much insulin. 3 mmol is lower than most people with diabetes like to go, because they cannot regulate injected insulin so accurately, so for someone with diabetes on insulin the rule of thumb is to regard under 4.0 mmols as a hypo. In someone without diabetes their BG levels may well be around 3.5-3.8 mmols especially on waking. 3.00 mmols seems a little on the low side but kids without diabetes sometimes are quite low in the mornings.

In fact my non diabetic twin went though spells of feeling dizzy and shaking when she was out playing with her friends she would be around 5 or 6 years at the time. At first I couldnt work out what it was. I though it might be the asthma puffer making her feel dizzy, but she had not been using it. After this happen a few times I realised that her symptoms sounded like a hypo. I checked, her BG levels were under 4 when this happen. She seemed to grow out of these spells and nothing ever came of them. Only Sasha is diabetic and not Beckie, this was about 8 or 9years or ago.

So really not a lot of helpful info. The low BG levels might not be an indicator that something is wrong, but on the other hand you cant rule it out because of the random high levels you have found several times

I have looked but I havent really been able to find and studies about hypo levels before the onset of type 1, even though I have read this in the past.

[mummyof4]

No problem hun,
I know it's kinda hard because if I didn't suspect D then I properly would have not given it a second thought, I think it's because of what’s happening I notice everything that’s happening and because I can check her blood I can see what’s going on at the time. And although that’s a good thing you properly notice alot more then you would. (If that make any sense? lol)

I am just going to keep an eye on her and see what brings her up the most then try and give her that before I next see the doctor, I have the flu at the moment and I think holly's getting it too now? I was wondering if I did it this week would he just put the high numbers down to her having the flu?

She has a non stop runny nose at the moment. (Same as me :( ) But no cough as yet mind you I haven't had a cough just been feeling really tired and stuffy, headache, ect

I am just so tired of this right now and I have been so run down from it all, I just want someone to take notice of my concerns and rule this out totally.
I don't understand why there making just a big deal of this? It would be so much better if they could just test her and get it over and done with!!!! if I am wrong then that’s fine no harm done but if I am right and they ignore this then surely the out come could be alot worse? xxx

[Jackie UK]

If Holly's BG levels go up then that is more of an indication that she has diabetes. As in people without diabetes, their insulin production would stop the BG levels from rising to high levels. On rare occasions some people have lower BG levels when ill, but mostly infections and illnesses send the BG levels up in someone with diabetes. If there is glucose in the urine or over a certain level in the blood then diabetes is usually the reason. If Holly isnt eating much ,this might also mean her levels stay down if she is in the early stages.

[mummyof4]

Holly's levels don't normaly stay up for longer than an hour? but tonight she had dinner at 7:30 then a lolly at about 8pm (from halloween :) ) i just checked her at 10:30 and she's 9.1

[mummyof4]

Ok this has been holly tonight.


14.41 she was 4.9
15.54 she was 8.5 double checked and it was 8.3
20.01 she was 9.1
22.46 she was 8.7
00.00 she was 13.1 double check and it was 11.5
00.24 she was 9.4

she has just woken 1:30 and wanted a drink and somthing to eat? i wasn't sure if it would be a good idea to give her food? so i just gave her water? 1:30 she is 6.3 back to normal again? (thank-god i was getting a little scared :( ) xxxx

[Jackie UK]

Ok this has been holly tonight.


14.41 she was 4.9
15.54 she was 8.5 double checked and it was 8.3
20.01 she was 9.1
22.46 she was 8.7
00.00 she was 13.1 double check and it was 11.5
00.24 she was 9.4

she has just woken 1:30 and wanted a drink and somthing to eat? i wasn't sure if it would be a good idea to give her food? so i just gave her water? 1:30 she is 6.3 back to normal again? (thank-god i was getting a little scared :( ) xxxx

The high figures arent normal levels.

Just try checking just after meals. 20 - 30 minutes after. Otherwise you will just be picking up the lower "normal levels" and the GP will probably go on about how often you are testing, not taking into account how they are ignoring symptoms and leaving you to worry. Have you had any levels higher that 13.1 mmols and how long was that after a meal?

Let us know what happens this week

[mummyof4]

The high figures arent normal levels.

Just try checking just after meals. 20 - 30 minutes after. Otherwise you will just be picking up the lower "normal levels" and the GP will probably go on about how often you are testing, not taking into account how they are ignoring symptoms and leaving you to worry. Have you had any levels higher that 13.1 mmols and how long was that after a meal?

Let us know what happens this week

I know i did worry about that my self :(
i don't normaly test her as much as that, but i was really scared last night :( and didn't want it to go up really high and i didn't even know about it :(

i had a reading last night of 19.6???? but some time with in half and hour it had gone back down? that was at 2:30 this morning i belive?

[Jackie UK]

I know i did worry about that my self :(
i don't normaly test her as much as that, but i was really scared last night :( and didn't want it to go up really high and i didn't even know about it :(

i had a reading last night of 19.6???? but some time with in half and hour it had gone back down? that was at 2:30 this morning i belive?

Hi

Well 19.6 mmol obviously isnt normal. Sasha's BG level was too high to read at diagnosis and took ages to get it down with increasing amounts of insulin over days. I think the results you are getting (ruling out sticky fingers/a malfuntioning meter etc) indicate that there is problem with insulin being released. The first phase insulin response is not happening when it should but the pancreas is still making enough insulin but too late. This is why the levels go up but then come back down quickly. So it's definately an indicaton of diabetes. Let us know what happens if you see someone today.

[mummyof4]

Hi

Well 19.6 mmol obviously isnt normal. Sasha's BG level was too high to read at diagnosis and took ages to get it down with increasing amounts of insulin over days. I think the results you are getting (ruling out sticky fingers/a malfuntioning meter etc) indicate that there is problem with insulin being released. The first phase insulin response is not happening when it should but the pancreas is still making enough insulin but too late. This is why the levels go up but then come back down quickly. So it's definately an indicaton of diabetes. Let us know what happens if you see someone today.

This is what i belive is happening (The first phase insulin response is not happening when it should but the pancreas is still making enough insulin but too late) is this possible in D then? also the same as some times it kicks in ok and some times it don't?

I have spoken to my H/V today and she said she's going to make it her mission to get her refferd :) she gave me a big cuddle :) didn't relize i needed one so bad lol xxxx

[Jackie UK]

This is what i belive is happening (The first phase insulin response is not happening when it should but the pancreas is still making enough insulin but too late) is this possible in D then? also the same as some times it kicks in ok and some times it don't?

I have spoken to my H/V today and she said she's going to make it her mission to get her refferd :) she gave me a big cuddle :) didn't relize i needed one so bad lol xxxx

Thank god for that! Yes its is possible for this to happen in very early stages. Months I should think. I hope you get seen by someone fairly quickly but hang on the fact that she its doing OK at the moment and there is unlikely to be any damage going on because she has normal levels most of the time. I am relieved that someone is listening. At last

[mummyof4]

Ok,

my health Visitor is has refferd her to a peadiatrican at the hospital!
i know it's not a D specilist but it's better than where we was before
she said she is not sure how long it will take but thats all she can do from her end, she said that this hole thing was wrong (as we all know) but all the other problems that she has had in the past my health visitor also feel's this still need to be delt with as in her sweat test for cf she feels that needs to be done again.

i don't think my H/V totaly understands D becuase she did question me on a few things.

she said that even a non D would rise after eating even up to 3 hours later?????

she said that if she had D then she would have ketones all the time?????

she said that the only to dignose is a fasting test?????

this isn't right is it?

but anyway, she is really good i trust her 100% and i don't think she ment it in anyway, she still thinks she needs to be seen, and she has made the refferal

[kateb]

I have only just seen this post as I am a member of the email list and don't use this very often. I would take your daughter down to A&E armed with a urine sample in a clean pot, and demand that someone test it. It is not the ideal way but something you may have to do if your doctor isn't listening. My son's doctor ignored his symptoms as he didn't think anyone that yong (he was 23 months) and with no family history would have diabetes. Fortunately we have a very good family friend who insisted Owen needed to be seen that day so we went straight to casualty, with said urine sample! I said to the doctor that our GP didn't seem that bothered but that I felt it needed to be investigated further that day, and that if she checked his urine and felt it was safe to go then I would. It won't take them very long in A&E and I would be assertive and say that you want this done. They can't really refuse, or they could face legal proceedings, so it would be unlikely they would refuse.
Hope it helps!

[Jackie UK]

Ok,

my health Visitor is has refferd her to a peadiatrican at the hospital!
i know it's not a D specilist but it's better than where we was before
she said she is not sure how long it will take but thats all she can do from her end, she said that this hole thing was wrong (as we all know) but all the other problems that she has had in the past my health visitor also feel's this still need to be delt with as in her sweat test for cf she feels that needs to be done again.

i don't think my H/V totaly understands D becuase she did question me on a few things.

she said that even a non D would rise after eating even up to 3 hours later?????

she said that if she had D then she would have ketones all the time?????

she said that the only to dignose is a fasting test?????

this isn't right is it?

but anyway, she is really good i trust her 100% and i don't think she ment it in anyway, she still thinks she needs to be seen, and she has made the refferal



OK several points. GPs and HVs often know very little about type 1 diabetes, but are healthcare professionals and therefore should have enough common sense to find out things if they do not understand and make referrals when they are out of their depth.


1. People without diabetes do not have blood sugar levels that go up to 13 mmols or 19 mmols. People without diabetes rarely go above 10 mmols. The normal levels are between around 3.8 and 8.0 mmols.

2. People with diabetes do not have ketones all the time. Sasha has BG levels were off the meter, over 33 mmols at diagnosis and she did not have ketones. Quite a few list members have said that their children were diagnosed with high BG levels, but no ketones. Its less likely if someone is diagnosed early that there will be ketones.

3. A fasting test is used to diagnose people with type 2 diabetes. People with type 1 often present with acute symptoms and the high BG levels are obvious. When someone is developing diabetes the pancreas is still producing enough insulin for a lot of the time. Overnight and first thing in the morning the levels are often good ,because you are not eating overnight and the body only has to deal with insulin needs for background. Most people with diabetes who inject or use an insulin pump need to lowest levels of insulin during the night. So you can see how someone in the early stages of diabetes can have normal levels.



It maybe that if you do get to see someone quickly, you may still need to hold back on beginning insulin, if the BG levels are still falling back to normal without insulin. This isn’t entirely unusual. I have read of such cases in the Ask the Diabetes Team Questions.

It must be very worrying to have all this going on and people not taking you seriously

[Jackie UK]

I have only just seen this post as I am a member of the email list and don't use this very often. I would take your daughter down to A&E armed with a urine sample in a clean pot, and demand that someone test it. It is not the ideal way but something you may have to do if your doctor isn't listening. My son's doctor ignored his symptoms as he didn't think anyone that yong (he was 23 months) and with no family history would have diabetes. Fortunately we have a very good family friend who insisted Owen needed to be seen that day so we went straight to casualty, with said urine sample! I said to the doctor that our GP didn't seem that bothered but that I felt it needed to be investigated further that day, and that if she checked his urine and felt it was safe to go then I would. It won't take them very long in A&E and I would be assertive and say that you want this done. They can't really refuse, or they could face legal proceedings, so it would be unlikely they would refuse.
Hope it helps!


Just butting in here. Tracy has already been to A&E and still no one is listening still.............they said that she still needs a GP to refer for more tests.

I dont think that there was any glucose in the urine or the blood test was normal. The BG level has to be over a certain level for glucose to spill into the urine. Something like over 10 mmols for a longish period of time.

[mummyof4]

Just butting in here. Tracy has already been to A&E and still no one is listening still.............they said that she still needs a GP to refer for more tests.

I dont think that there was any glucose in the urine or the blood test was normal. The BG level has to be over a certain level for glucose to spill into the urine. Something like over 10 mmols for a longish period of time.

Thanks hun, i think she got her info from her doctor? as he he worried that she might have type 2 D. so i think she was just confusing the 2 together?

i agree that she should look and read up on it if she doesn't understand!

i am just happy that we have been refferd :) even if it's not to a D specilist, hopfully he/she will listen to me and do the tests that she needs or reffers her on to a D specilist :cwds:

[mummyof4]

Hi jackie,

Thank-you so much for the strips they will come in handy :) (recived then this afternoon)
also a big thnk-you for the card xxxxxxxxx :D

[Jackie UK]

Hi jackie,

Thank-you so much for the strips they will come in handy :) (recived then this afternoon)
also a big thnk-you for the card xxxxxxxxx :D

How are things at the moment with Holly?

Jackie

[mummyof4]

How are things at the moment with Holly?

Jackie

Hi there,
the last 2 days have been really good? but i think it might be because she's not eating that much? i don't know? think she might be coming down with somthing?

she normaly don't stop eating but the last 2 day (today more) she hasn't been finishing her dinners.

i am going to try again tomorrow morning with the doctors, they have given me an appointment for the 18th of oct but thats so long away? they other doctors near me are full and not taking anyone else on :( xxxx

[Alba37]

Are you going to phone your own doc again tomorrow Tracy?

A x

[Jackie UK]

Hi there,
the last 2 days have been really good? but i think it might be because she's not eating that much? i don't know? think she might be coming down with somthing?

she normaly don't stop eating but the last 2 day (today more) she hasn't been finishing her dinners.

i am going to try again tomorrow morning with the doctors, they have given me an appointment for the 18th of oct but thats so long away? they other doctors near me are full and not taking anyone else on :( xxxx

Let us know how things go on. Thinking about you.

I know when my daughter had diabetes she was ill on and off for nearly 6 months. Half of the time she seemed perfectly well.

[Jackie UK]

Thanks hun, i think she got her info from her doctor? as he he worried that she might have type 2 D. so i think she was just confusing the 2 together?

i agree that she should look and read up on it if she doesn't understand!

i am just happy that we have been refferd :) even if it's not to a D specilist, hopfully he/she will listen to me and do the tests that she needs or reffers her on to a D specilist :cwds:

Hi Tracy


I was just wondering if you had any more news or an appointment to see a specialist yet?

[mummyof4]

Hi Tracy


I was just wondering if you had any more news or an appointment to see a specialist yet?

No nothing yet, sorry i haven't been in contact been really ill the last week or so :(

i thought thing's were getting better as i hadn't had any high numbers for all of last week :cwds:
but tonight we have had some high numbers! :(

i will keep you updated thanks for your support :cwds:
xxxx

[Jackie UK]

No nothing yet, sorry i haven't been in contact been really ill the last week or so :(

i thought thing's were getting better as i hadn't had any high numbers for all of last week :cwds:
but tonight we have had some high numbers! :(

i will keep you updated thanks for your support :cwds:
xxxx

Hi Tracy


Sorry to hear that you have been unwell. It must be very stressful for you with the worry about Holly and the other children to look after as well. Hope you feel better and Holly gets seen soon.


Jackie

[mummyof4]

Hi Tracy


Sorry to hear that you have been unwell. It must be very stressful for you with the worry about Holly and the other children to look after as well. Hope you feel better and Holly gets seen soon.


Jackie

Thanks hun,
i am feeling much better now!
last week was not a very nice week! we was all ill at the same time and it's hard work with 4 of them :rolleyes:

but they are all back at school now so just me and holly watching in the night garden :p

i called the hospital today and the have not recived anything?
i asked how long it should take and she said they sould have recived it by now? as when they get the refferal the consultant look's at them and then grades them! so if it has urgent then i would have been called or sent a letter? but holly is not even on the system? so she would assume they haven't got anything yet?

so i called the doctor's and the receptionist asked me to call back after 1pm and if i had no luck there then to call tomorrow :mad:
they are just soooo rubbish! how hard is it to send a letter?????

i will keep you updated ;) xxxxx

[mummyof4]

Hi there,
the hospital have the refferal now so should get an appointment soon xxx

[Jackie UK]

Hi there,
the hospital have the refferal now so should get an appointment soon xxx

Hi Tracy

Thats good news. I can tell the parents on the UK mailing list that there has been some news as some of the parents have been asking.

I'll keep in touch anyway. Waiting is the hardest bit.#

Jackie

[ROVERT81402]

Tracy,
I haven't been around for a week or so, and I think I missed a bunch of what happened, and I don't have the time to read through all the posts. What in the worl happened? I thought you had gotten your GP to write a letter for referal? And he terminated your call? What in the heck is that about?! How long does it take to switch GPs? How is Holly doing?

[Jackie UK]

Tracy,
I haven't been around for a week or so, and I think I missed a bunch of what happened, and I don't have the time to read through all the posts. What in the worl happened? I thought you had gotten your GP to write a letter for referal? And he terminated your call? What in the heck is that about?! How long does it take to switch GPs? How is Holly doing?

Hi

Tracy hasnt been feeling great at the moment, but know that her hospital have now received her referal letter but the last time we exchanged messages Tracy still didnt have a date to see someone. Its so frustrating for everyone

jackie

[mummyof4]

Got an appointment! 2nd jan
still a few weeks away but atleast i have one i suppose :cwds:
proberly becuase it's over xmas!!!
will let you all know what happends thanks xx

[Jackie UK]

Got an appointment! 2nd jan
still a few weeks away but atleast i have one i suppose :cwds:
proberly becuase it's over xmas!!!
will let you all know what happends thanks xx

Hi Tracy

It must be a relief to know that you will be seeing someone in a few weeks. Even though I believe that you should have been seen much sooner Anyway you probably know a great deal about diabetes now and know what to do should Holly's symptoms become worse. Are you still seeing the occassional high BGs readings? I know that you will return to the hospital if the situation because worse. I hope you manage to have a good Christmas with all the georgeous children.

Jackie


(Just for anyone new reading this message, so there is no confusion, if anyone thinks that their child is showing signs of diabetes, you should consult your GP or the NHS Out-Of- Hours service as soon as possible. Or in some cases, go straight to the hospital. Diabetes is a serious condition and can be deadly if left untreated. Tracy has followed advice and had already contacted health care professionals several times)

Symptoms of diabetes

http://www.childrenwithdiabetes.com/d_0n_100.htm#symptoms

http://www.netdoctor.co.uk/diseases/facts/diabeteschildren.htm

[Alba37]

Great news, I'm so pleased to hear it. At least it's not too long to wait.


A x

[anele60]

Hi all,
looking for a good doctor to take notice of my daughters symptoms and high readings of glucose levels? anyone here live in south east london and know anyone that might be able to help? please?
i need a refferal the specilist has said she will see holly but she need to be reffered? and my doctor wont reffer us :(

please look at the other thread for more info thanks xx

http://forums.childrenwithdiabetes.com/showthread.php?t=25679

hi there MUMMYOF4,
i just discover this site and ur message is the first one to read.i do feel what u go thru cos two years ago i was in the same boat.i hope that u can have help soon and all will be o.k. if u still need to see a doctor u can contact,,samedaydoctor.co.uk,,NO REFFERAL NEEDED and after tests,maybe the doctor from there can arange for ur daughter to be registered in a clinic/hospital localy.if u prefer to go private-the portland hospital have two paediatric /endocrinologists doctors.i do not know more about the last because i just discover the site last nite and i cannot wait until the g.p.surgery open to have a refferal.please do some research regarding the type of insulin aviable.my daughter's bg results are very bad since the hospital change her treatment to LANTUS.WE WISH U ALL ALL THE BEST AND HOPE TO HEAR THAT U HAVE THE HELP AND SUPPORT U DISPERATLY NEED.:cwds:

[Jackie UK]

hi there MUMMYOF4,
i just discover this site and ur message is the first one to read.i do feel what u go thru cos two years ago i was in the same boat.i hope that u can have help soon and all will be o.k. if u still need to see a doctor u can contact,,samedaydoctor.co.uk,,NO REFFERAL NEEDED and after tests,maybe the doctor from there can arange for ur daughter to be registered in a clinic/hospital localy.if u prefer to go private-the portland hospital have two paediatric /endocrinologists doctors.i do not know more about the last because i just discover the site last nite and i cannot wait until the g.p.surgery open to have a refferal.please do some research regarding the type of insulin aviable.my daughter's bg results are very bad since the hospital change her treatment to LANTUS.WE WISH U ALL ALL THE BEST AND HOPE TO HEAR THAT U HAVE THE HELP AND SUPPORT U DISPERATLY NEED.:cwds:

Dear Anele60

I am glad that you have found this message board I am sure that some other parents will be along to say Hi later.


Just a little background on the original posters (OP) message, Tracy has been a member of the board for sometime and has been persistenly trying to get someone to take notice, as her daughter has had some symptoms of diabetes and some random high BG levels. She had been dismissed by the GP and also the A&E depts at two hospitals. The BG levels rapidly return to normal levels. Obviously this needs investigating . At the moment Tracy has an appointment in the first week in January to see someone. Its been an unhill battle for tracy to get anyone to listen. However Tracy has been monitoring the levels and knows what to do should things start to become suddenly worse.


You mention problems with your daughter's insulin regimen. How long ago did your daughter change to Lantus and what have your clinic suggested you do to deal with the problems? If you have recently changed from Mixtard or Novomix then it does take a while to get the insulin doses adjusted.

My daughter is now 14 but was diagnosed at 4 years old, I think we have used most of the different insulin regimens and now my daughter has an insulin pump.

[anele60]

hi Jackie,
thank u for ur kind words and i try to answer as much as i can.my daughter's insulin was changed in 13/05/08 after been in I.C. for a week with very high b.g. and ketones above 5 from the blood test not urine.we moved to cabs counting(still do) but again in I.C.twice since then.at the moment we do not have a consultant because i discharged my daughter from hospital do to the cons.incompetence.last meeting we had with him in clinic my daughter run out in tears.two sisters and the dietitian was against his decision.we was prepared to have very soon a pump and the consultant did not take in consideration the facts,he repeatedly acused my daughter of skiping tests,injections(''typical teen ,want to loose weight'')even in hospital she will have a 'hypo' 3a.m.and by 8 a.m her b.g.was way over 15.every test,regime he ask to be done we agreed,he never comment or reach a conclusion but constantly harras us.my former g.p(unfortunately we moved to another area)said from the begining that diana have agresive diab.one of the new g.p said the same .i start to do some research and is a very high poss. that diana have brittle diab.we are still waiting to be reffered to another local consultant wich the former cons. lied that he sent a request on 17/10/08 but recently i found out from the g.p that he want diana bach for more tests despite the fact that i made clear that he is not my daughter cons. anymore.i start thinking that he was reseaching on my child because every single time we ask his opinion or ask questions he become very stroppy and nasty with the staff when they disagreed with his decisions.i am lucky that the g.p.(so far)help and support us therefor i want to take diana to a endocrinologist in london to do all the neccesary tests,if the tests for brittle are negative this is fantastic because is (i hope) poss.to be the puberty.
another thing is that diana have red marks after the lantus injection and i ask if is poss. to be alergic,again/no answer or action.i cannot just accept what is happening because i know that if we dont do nothing her general health will deteriorate.
i go to see the g.p monday and go from there.
i hope that mummy of 4 will have a answer soon.
by for now

[Jackie UK]

hi Jackie,
thank u for ur kind words and i try to answer as much as i can.my daughter's insulin was changed in 13/05/08 after been in I.C. for a week with very high b.g. and ketones above 5 from the blood test not urine.we moved to cabs counting(still do) but again in I.C.twice since then.at the moment we do not have a consultant because i discharged my daughter from hospital do to the cons.incompetence.last meeting we had with him in clinic my daughter run out in tears.two sisters and the dietitian was against his decision.we was prepared to have very soon a pump and the consultant did not take in consideration the facts,he repeatedly acused my daughter of skiping tests,injections(''typical teen ,want to loose weight'')even in hospital she will have a 'hypo' 3a.m.and by 8 a.m her b.g.was way over 15.every test,regime he ask to be done we agreed,he never comment or reach a conclusion but constantly harras us.my former g.p(unfortunately we moved to another area)said from the begining that diana have agresive diab.one of the new g.p said the same .i start to do some research and is a very high poss. that diana have brittle diab.we are still waiting to be reffered to another local consultant wich the former cons. lied that he sent a request on 17/10/08 but recently i found out from the g.p that he want diana bach for more tests despite the fact that i made clear that he is not my daughter cons. anymore.i start thinking that he was reseaching on my child because every single time we ask his opinion or ask questions he become very stroppy and nasty with the staff when they disagreed with his decisions.i am lucky that the g.p.(so far)help and support us therefor i want to take diana to a endocrinologist in london to do all the neccesary tests,if the tests for brittle are negative this is fantastic because is (i hope) poss.to be the puberty.
another thing is that diana have red marks after the lantus injection and i ask if is poss. to be alergic,again/no answer or action.i cannot just accept what is happening because i know that if we dont do nothing her general health will deteriorate.
i go to see the g.p monday and go from there.
i hope that mummy of 4 will have a answer soon.
by for now

Hi anele60

Unfortunately your experience with your consultant is not that uncommon and a number of parents and adults on other diabetes forums that I have used have had poor experiences with some consultants. Do you live near enough to ask to be referred to UCLH http://www.uclh.nhs.uk/ ? A number of parents from the UK CWD mailing list support forum speak highly of this hospital. A number have asked to be referred there to get pump therapy.

I have never heard of any definitive tests, which can show that someone has “brittle diabetes”. Brittle diabetes is more of a description of symptoms, rather that a separate condition or a different type of diabetes. Most children and many adults find diabetes control very difficult and have problems with their BG levels going from low to high or high to low. We also had a lot of problems with our consultant who wouldn’t refer us to another hospital for pump therapy and warned us that we would be risking our daughter’s life to consider it!!! He actively tired to prevent us and another parent from getting referred to another hospital. However one has a right to ask for a second opinion and I hope that you don’t have to wait too long to find a better diabetes team.
I have found in the past that consultants who do not have the answers and are unable to help, tend to blame the patient or parents and don’t seem to accept that diabetes management doesn’t always follow the textbooks. Diabetes control is very difficult because so many different things affect control. He probably gets stroppy and nasty because he doesn’t have all the answers to the problems. Some doctors tend not to do well if they cannot “fix” something quickly. It’s easier to pass the blame on, or suggest that a patient has an unusual type of diabetes rather than spend the time trying to help the family.

We had reasonable control during the day at times, but as Sasha my daughter has no night time hypo awareness, at we often used to get low BG levels between 9.00 pm and 7.00 am the following day. So always had to be alert to nighttime hypoglycaemia. A pump helps, not because she wakes up when low, but because we can now run the basal rates low to help to prevent lows and if Sasha has been active we can lower the basal rates.

It is possible to be allergic to any type of insulin. Though this is uncommon. However Lantus does sometimes leave red marks more because of the acidic pH value rather than an allergy as such. Lantus tends to sting because of this. Levemir another basal insulin which has a similar profile of action to Lantus and doesn’t tend to sting in this way.

I hope that you manage to get a referral to a more supportive hospital. Keep in touch via the board and let me know how you get on.


Jackie

[anele60]

Hi anele60

Unfortunately your experience with your consultant is not that uncommon and a number of parents and adults on other diabetes forums that I have used have had poor experiences with some consultants. Do you live near enough to ask to be referred to UCLH http://www.uclh.nhs.uk/ ? A number of parents from the UK CWD mailing list support forum speak highly of this hospital. A number have asked to be referred there to get pump therapy.

I have never heard of any definitive tests, which can show that someone has “brittle diabetes”. Brittle diabetes is more of a description of symptoms, rather that a separate condition or a different type of diabetes. Most children and many adults find diabetes control very difficult and have problems with their BG levels going from low to high or high to low. We also had a lot of problems with our consultant who wouldn’t refer us to another hospital for pump therapy and warned us that we would be risking our daughter’s life to consider it!!! He actively tired to prevent us and another parent from getting referred to another hospital. However one has a right to ask for a second opinion and I hope that you don’t have to wait too long to find a better diabetes team.
I have found in the past that consultants who do not have the answers and are unable to help, tend to blame the patient or parents and don’t seem to accept that diabetes management doesn’t always follow the textbooks. Diabetes control is very difficult because so many different things affect control. He probably gets stroppy and nasty because he doesn’t have all the answers to the problems. Some doctors tend not to do well if they cannot “fix” something quickly. It’s easier to pass the blame on, or suggest that a patient has an unusual type of diabetes rather than spend the time trying to help the family.

We had reasonable control during the day at times, but as Sasha my daughter has no night time hypo awareness, at we often used to get low BG levels between 9.00 pm and 7.00 am the following day. So always had to be alert to nighttime hypoglycaemia. A pump helps, not because she wakes up when low, but because we can now run the basal rates low to help to prevent lows and if Sasha has been active we can lower the basal rates.

It is possible to be allergic to any type of insulin. Though this is uncommon. However Lantus does sometimes leave red marks more because of the acidic pH value rather than an allergy as such. Lantus tends to sting because of this. Levemir another basal insulin which has a similar profile of action to Lantus and doesn’t tend to sting in this way.

I hope that you manage to get a referral to a more supportive hospital. Keep in touch via the board and let me know how you get on.


Jackie
hello Jackie,
i cannot thank u enough for this.u help me so much because i tend to feel less ''paranoid'' about Diana's diabetes.all i wrote in here is TRUEbut so many times i feel quilty,angry...because i think that i do not do the right thing to help my child.by knowing that others have to face the same situation it make me feel more strong to continue,if not find an answer,to improuve Diana's health.i will do all i have to to go to the hospital u mentioned.distance is not a problem so i will go ,now,on that 'site'and go from there.
A VERY HAPPY NEW YEAR TO U AND FAMILY!!!WISH U ALL HEALTH AND HAPPINESS!!!
Elena and Diana

[Jackie UK]

hello Jackie,
i cannot thank u enough for this.u help me so much because i tend to feel less ''paranoid'' about Diana's diabetes.all i wrote in here is TRUEbut so many times i feel quilty,angry...because i think that i do not do the right thing to help my child.by knowing that others have to face the same situation it make me feel more strong to continue,if not find an answer,to improuve Diana's health.i will do all i have to to go to the hospital u mentioned.distance is not a problem so i will go ,now,on that 'site'and go from there.
A VERY HAPPY NEW YEAR TO U AND FAMILY!!!WISH U ALL HEALTH AND HAPPINESS!!!
Elena and Diana

Best Wishes for 2009. Yes, you're definately not paranoid, unfortunately there are quite a few hospitals with poor skills when it comes to dealing with children with diabetes. There are also hospitals which are centres of excellence.



Jackie

[tresap]

Did anyone ever get an update on Holly as I often wonder about her.
Its been a long time since the hospital appointment, please excuse me for sounding so upfront but surely we should have heard something by now.

[Jackie UK]

Did anyone ever get an update on Holly as I often wonder about her.
Its been a long time since the hospital appointment, please excuse me for sounding so upfront but surely we should have heard something by now.

Hi Tresap


Tracy has eventually been able to get a referral to a hospital and they are still waiting for the results of tests and follow up appointment. Tracy has been keeping in touch with us by joining the UK Parents mailing list. She will no doubt post a message when there is more news.

[Seans Mom]

Hi Jackie,
Just wanted to give a shout out and say thanks for keeping us informed. I've been wondering about Tracy and Holly also and am relieved to see she is keeping in touch. :D

[Jackie UK]

Hi Jackie,
Just wanted to give a shout out and say thanks for keeping us informed. I've been wondering about Tracy and Holly also and am relieved to see she is keeping in touch. :D

I've not heard anything for a while but we are still in touch.