high blood sugars and more.......

[jules73]

Hi my daughter who is normally fairly well controlled is experiencing dramatic highs and lows :eek: Shes not ill, shes not eating anything out of her diet range, im at the end of my tether with it all lol. As my daughter is just moving into puberty i was just wondering whether there was a link between hormonal changes and unstable blood sugars. Has anyone else had problems similar to this (my daughter is 11 and has had type 1 for 2 years), if so what coping mechanisms worked for you, how did you stabilise their bgs???????????
would be thankful for ANY advice........
jules;)

[Jackie UK]

Hi my daughter who is normally fairly well controlled is experiencing dramatic highs and lows :eek: Shes not ill, shes not eating anything out of her diet range, im at the end of my tether with it all lol. As my daughter is just moving into puberty i was just wondering whether there was a link between hormonal changes and unstable blood sugars. Has anyone else had problems similar to this (my daughter is 11 and has had type 1 for 2 years), if so what coping mechanisms worked for you, how did you stabilise their bgs???????????
would be thankful for ANY advice........
jules;)

Hi Jules

Sometimes minor illnesses or viruses which dont seem to cause any outward symptoms can cause high BG levels and yet sometimes a cold doesnt seem to send to BG levels off course.

What insulin regimen is your daughter using?

Of course it could also be hormonal changes. How long have the BG level been like this for? Also coeliac can cause fluctuating levels like this. Was your daughter tested for Coeliac at diagnosis?

Hopefully things will settle down but you do get periods like this that come and go and they can be very frustrating.

[BozziesMom]

Hi my daughter who is normally fairly well controlled is experiencing dramatic highs and lows :eek: Shes not ill, shes not eating anything out of her diet range, im at the end of my tether with it all lol. As my daughter is just moving into puberty i was just wondering whether there was a link between hormonal changes and unstable blood sugars. Has anyone else had problems similar to this (my daughter is 11 and has had type 1 for 2 years), if so what coping mechanisms worked for you, how did you stabilise their bgs???????????
would be thankful for ANY advice........
jules;)

My son is only two and I've already been warned by our endo to expect major drama with the blood sugar once puberty hits. Sorry I don't have help for you though. I'm sure lots of foks will chime in. :)

[jules73]

thanks for your replies so far my daughter is on regime of novorapid when she eats and once daily levemir. Currently looking into getting her a pump just need to get my head around carb counting:cwds: her bgs have been unstable for about 3 weeks. Just need to ride the wave at the mo but thanks for your advice........
jules

[Jackie UK]

Some diabetes specialists or DSNs will recommend that Levemir or Lantus is administered twice daily rather than on single injection a day. If your Lantus or levemin "wears off" and you don't happen to have enough Novorapid trickling into your blood at the time, you may experience "basal fade" and possibly an accompanying jump in the BG levels. However, splitting the dose is something one should discuss with your health care team. Many healthcare teams are receptive to parent’s explanations and views. There are many parents posting on the UK CWD mailing list, who use a Lantus or Levemir regimen and some have very good control on a single injection a day. However quite a few parents have now switched to twice daily injection of basal insulin rather than a single dose. Again each child is different and the change should be discussed with the child or patient’s diabetes team.

Not all children or adults have problem with blood glucose excursions if they do not have Novorapid or Humalog every four hours, if their basal insulin is set correctly. I have not experienced this myself before Sasha had the pump and many of the parents I have spoken to (there are 200 parents subscribed to the UK CWD mailing list) have not all experienced this problem. Some have. Though we do suggest they talk to their diabetes team if they appear to be getting "basal fade" or other problems before making decisions.
It is not always easy get the basal dose right, as people do not have flat basal requirements. Most people have different basal insulin requirements at different times of the day. Insulin pumps can help with this problem. You can set the pump to deliver different amounts of basal insulin at different times of the day. For instance, my daughter, along with many other people with diabetes, has much higher insulin needs first thing in the morning and lower requirements later in the day. She has very small insulins needs in the early hours of the morning. Again an insulin pump can deal with this. My daughter has had seizures in the past due to having too much longer acting insulin on board at night. Once give it cant be taken out. She has no hypo awareness at nighttime. An insulin pump enables us to tailor the insulin needs to suit my daughter and to take into account the lower insulin needs at night or after exercise.

Fiona, I have to respectfully disagree with your statement that eating had little to do with the control of the blood glucose levels. Eating carbohydrate has a huge effect on the blood glucose levels. If you do not have enough insulin on board, either basal or bolus, then the BG levels will rise and its true if your basal insulin is not right then your BG control will be difficult. Novorapid has a shorter duration than the older Actrapid type (regular Human insulin as you will know) and so it can be difficult to titrate the basal insulin so that there is no fade between meals and boluses. Which is what you are saying. However quite a large number of children using levemir or Lantus do manage well and are able to miss meals and snacks with no loss of control.


Most of the parents who post regularly on the UK CWD mailing list have insulin pumps for their children or are just waiting to begin on a pump or are hoping for a referral to get a pump.
They can tell you of the amazing difference that a pump has on the quality of life not only for the child, but for the whole family. Many young children, toddlers and babies have such small insulin needs that only a pump can accurately deliver such small amounts of insulin to give good safe control.

There are many studies showing the greatly improved quality of life for children and adults on pumps and the improvement in HbA1c and the lowering of the number of severe hypoglycaemaic events.


I have not seen the study that you refer to from Kings.

Continuous subcutaneous insulin infusion in toddlers and children with type 1 diabetes mellitus is safe and effective

http://www3.interscience.wiley.com/journal/118669012/abstract?CRETRY=1&SRETRY=0

Parents of children with diabetes described the transition to the insulin pump in terms of enhanced freedom and quality of life for all family members
http://ebn.bmj.com/cgi/content/extract/8/4/124

Insulin pump therapy
also known as continuous subcutaneous insulin infusion (CSII)

http://www.diabetes.org.uk/About_us/Our_Views/Position_statements/Insulin_pump_therapy/

http://www.thefreelibrary.com/UK+National+Institute+for+Clinical+Excellence+Reco mmends+Insulin+Pump...-a098082086

Jules do ask more about pumps if you wish to know more or visit the websites of the different pump companies in the UK.

[Jackie UK]

[Hi,

You are very welcome here:) and I accept that you werent giving advice as such, but only saying what you do. I was just reminding the original poster and any other parents reading, to check with their own health care teams as a precaution if they were thinking of make such changes. I am sure that sharing some of your expirences of living with diabetes will be very helpful to some of the posters. I also acknowledge that many consultants that patients and children see, are not diabetologists but only general paediatricians with an interest in diabetes and sometimes their knowledge of new products is not always as good as one would like. I am a firm believer that patient education can bring about better outcomes. We are looking after ourselves, or children for almost 100% of the time. We may see our diabetes team for what amounts to only a few hours in a whole year. So it’s very important that we do seek information and explore options for ourselves.

So now let me be a little nosy. Were you taught carb counting in the past or exchanges? When your daughter was diagnosed was there any offer to teach some form of carb counting or carb estimation? I just wondered. When my daughter was diagnosed 1999 any form of carb counting or exchanges was frowned on as uncesessary we were told to let Sasha eat to appitite! Which we soon discovered that didnt work. We had to teach ourselves. People from other diabetes groups explained how it was done. No wonder we never had any stability! Until we started carb counting I had no idea how bad my guessing was!

Not trying to change your mind about pumps, as they are not for everyone by any means, but if you have just been put off by presentation which appeared to be negative perhaps you might be interested in some positive expirences of people using pumps. There are one or two parents on the UK CWD mailing list who have type 1 diabetes as well as their children and may post their expirences here. Not to change your mind but to give a view.

Welcome again.

[Danni]

Hi Fiona
I am most interested in your post re taking Novorapid every 4 hours regradless of whether you eat or not. I have never heard of this before. I thought that Novorapid should be used every time you eat to cover carbohydrate consumed and also to correct high blood sugar levels.... Do you also take Novorapid when you eat? Would you say also that eating carbohydrate does not cause a rise in blood sugar levels? If so, I would have to disagree with you... My son is 10 and has had T1 for 6 years and I can categorically state that eating carb does cause a rise in levels! We carb count everything that he eats and he administers insulin to correspond with the amount of carb that he consumes. You have directed readers to DAFNE, I thought this was also about matching insulin to carb consumed?
However, I would be interested to hear more about how you manage your diabetes.
I have to totally disagree with your comments about insulin pumps. My son has had a pump for 2 1/2 years and I have to say that it has totally transformed his life. I would like to see evidence that says that pumps do not give any value to the under 25s. Since being on a pump, he has had a quality of life which he did not experience before; there is flexibility in his everyday life; it is easier when he plays sport; he can more or less eat what he likes, when he likes; he doesn't have to have injections; and his diabetes control is much better. It has not only made his life better but that of the whole family.

[Jackie UK]

I would have thought that all consultants who deal with children with diabetes realise that background insulin is always needed and has to be the right level otherwise the BG levels rise. In the absence of insulin the body "thinks" it's starving and doesnt "realise" that there is plenty of glucose in the blood. Signals are sent to the liver to release more glucose from the liver's glycogen depot. Since there is a lack of insulin, the glucose will remain in the blood stream causing an increased blood glucose level.

You probably know all this anyway. So you think that most consultants dont really understand this in your expirence.


I think that you would find, that if the statement about insulin pumps was in fact true, that NICE would not be prescribing insulin pumps.

Anyway I am looking forward to seeing a link to the slides or a write up of the presentation. Do you think that you may have misinterpreted what was said ? (not meaning to be rude here)

Pumps are not for everyone and many people have good control on basal bolus regimens

[emm142]

I think it's awesome that you've found a regime that seems to work so well for you and your daughter. Personally, I've been on a pump since July and my HbA1C has been lowered from 7.8 to 6.4, which shows me that a pump is definitely the best method of control for me, at the moment. The way you do things would never work for me (taking two units without eating anything would drop my BG by 16mmol, even if I only took 0.5 units that would drop it 4mmol which would often be too much, which is why the pump works so much better for me than the pens. 0.1 unit corrections are INCREDIBLE). Varying basals are also really useful, I need a little more in the early morning and hardly anything in the early afternoon. But I'm sure that pumps aren't for everybody.

BGs can definitely go crazy around puberty, but it could also just be one of those strange passing phases.. I'm hoping it gets resolved soon though, 'cause swinging BGs are no fun!

[Jackie UK]

I think it's awesome that you've found a regime that seems to work so well for you and your daughter. Personally, I've been on a pump since July and my HbA1C has been lowered from 7.8 to 6.4, which shows me that a pump is definitely the best method of control for me, at the moment. The way you do things would never work for me (taking two units without eating anything would drop my BG by 16mmol, even if I only took 0.5 units that would drop it 4mmol which would often be too much, which is why the pump works so much better for me than the pens. 0.1 unit corrections are INCREDIBLE). Varying basals are also really useful, I need a little more in the early morning and hardly anything in the early afternoon. But I'm sure that pumps aren't for everybody.

BGs can definitely go crazy around puberty, but it could also just be one of those strange passing phases.. I'm hoping it gets resolved soon though, 'cause swinging BGs are no fun!



Hi Emma

I am pleased to hear that you are doing well on the pump

My daughter's HbA1c dropped from 7.3 with lots of daytime hypos and severe night time hypos, to an HbA1c which is usually around 6.3, has been a little lower at times . We have never aimed to lower the HbA1c as such, but to prevent the unstablity and the night time hypos, but just found that with the pump it gave the ability to lower the BG levels between meals and ensure that the basal insulin on board overnight did not exceed safe levels.

You sound as though you have very low insulin needs if 1 unit would lower your BG level by 8mmols, so it would have been quite difficult control your BG levels using a conventional injection regimen.

I am hoping my daughter HbA1c will not creep up too high during the teens as more and more responsibility passes to her. We take great care to praise and encourage her and never blame her when things don’t go to plan. Having been “in charge” ourselves we know how easy it is to make mistakes and omissions and how diabetes control can be burdensome.

[emm142]

I am pleased to hear that you are doing well on the pump

My daughter's HbA1c dropped from 7.3 with lots of daytime hypos and severe night time hypos, to an HbA1c which is usually around 6.3, has been a little lower at times . We have never aimed to lower the HbA1c as such, but to prevent the unstablity and the night time hypos, but just found that with the pump it gave the ability to lower the BG levels between meals and ensure that the basal insulin on board overnight did not exceed safe levels.

You sound as though you have very low insulin needs if 1 unit would lower your BG level by 8mmols, so it would have been quite difficult control your BG levels using a conventional injection regimen.

I can definitely say that the pump is the best thing ever to happen to my D control. I think I was the first, or one of the first, children to be put on a pump at my clinic (I know I had to see some of the adult specialists because the pediatric nurse and consultant didn't know that much about the pump).

I probably have more hypos since starting the pump, but that's just a side effect of better control in general (and running closer to the bottom of normal, especially at night). I don't see too many numbers below 2.4 though, so I'm fairly happy with that.

I have a strange insulin sensitivity. 1 unit drops me a lot, and my basals are pretty low (all below 0.3u/h) but my I:C isn't that low, 1:11.

I'm glad your daughter's doing well on the pump as well. (:

[Jackie UK]

Dear F

Are you sure you wont stay?

People have different views.

Another suggestion is, what about the UK Children with Diabetes Mailing list. This is an email support list. You have to sign up for it but you cannot read the emails unless you are a member and you cannot find the contents of the emails by doing a google search either. Anyway, should you wish to investigate the mailing list, there are instructions here about how to subscribe.
http://www.childrenwithdiabetes.com/uk/

Or send me a private message and I can subscribe you myself.

You can always come back here to find us if you need us. I will try to delete my quotes from your messages. You dont need to do anything to leave the forum. If you dont post messages, or tag threads that you want to follow, you shouldnt have any problems.


Think about the mailing list as an option.

Oh yes, have you considered coming along to the Friends For Life conference in the UK in August?

[dianne12]

--------------------------------------------------------------------------------

My daughter just changed from Mixtard 30 to Levamir ad Novorapid. She was diagnosed 8 months ago. Recently she has struggled to maintain reasonable BG and rarely has readings under 10.

I'm hoping the new insulin regime will help to regulate BG a little better for her. Since diagnosis she has failed to gain any weight and seems to be continually under the weather, she has a skin condition on her nose that never quite heals and constantly complains of stomach aches also she seems to be permanently hungry and bad tempered. She has grown about 2 inches in height in the last few months and is also undergoing puberty. I know growth hormone and insulin don't really get on - so this creates additional problems. GH is released over night and sometimess accounts for the dawn phenomena so I think this is partly to blame for the irregular high morning BG. The last few days 10-14 at 8am and then goes up over the day, often up in the 20's by the evening. With readings like that it looks like the Levamir will need to go up a bit yet. She's currently on 26 Levamir and 6, 8, 10 of Novorapid. She doesn't help herself at school and often eats sweets and chocolate because that's what every body else does. It's not easy - funny they tellyou at diagnosis that you can carry on with nornmal life? I suppose it's early days yet?

Other thing is that she has always suffered some related health problems, drinking a lot, peeing a lot(including bed wetting) , mouth ulcers, pains around her navel and serious mood swings - seems like immunity issues had been going on for some years before diagnosis but this was dismissed as nothing to do with diabetes? I've always maintained that there was a physiological basis for these ailments but this was dismissed and put down to anxiety?