Hi i'm new here

[theo'smummy]

Hi there , Just wanted to say hi i'm new to this site.
My son is 2 and has been diabetic since he was 18 months old .I have found it very hard to keep his levels stable and was at my wits end with worry.
He was constantly being admitted to hospital with ketoacidosis through no fault of my own.At last this has been seen as a problem as we are constantly in hospital and he is now starting on pump therapy next week . :)

[Jackie UK]

Hi Theo's mum


Sorry that you have found yourself here. Unfortunately this message board isn’t that well used. I run the UK Children with Diabetes on line parents mailing list. That has about 132 members and is a very busy mailing list. When Jeff Hitchcock set this particular message board forum he asked for any suggestions and I asked for a UK section, however partly due to the success of the mailing list already in existence there seems to be very few posters on here on a regular basis

There are several parents on the UK mailing list with children the same sort of age as Theo. Do you live in the Leeds area by any chance? I know that Dr Fiona Campbell and Dr Bill Lamb have quite a few young children on pumps. Theo is certainly the youngest child that I have heard of on a pump. There is a mum on the UK mailing list who has a toddler of two who lives in the Devon area who we are tying to persuade ought to think about pump therapy. However her consultant is not being very proactive. It would be great if you could join the parents list as she doesnt know any UK parent with a toddler as young as Theo.


There is information about how to join the mailing list on this link on the CWD site. I have run the mailing list for about four years.

This is a link which tells you more about the mailing list and how to subscribe if you need any more info just ask. We have about 40 - 45 members whose kids are pump users and two more families about to start using pump including a set of identical twins of 9 years old.

http://www.childrenwithdiabetes.com/uk/


Jackie Jacombs UK CWD mailing list admin



Hi there , Just wanted to say hi i'm new to this site.
My son is 2 and has been diabetic since he was 18 months old .I have found it very hard to keep his levels stable and was at my wits end with worry.
He was constantly being admitted to hospital with ketoacidosis through no fault of my own.At last this has been seen as a problem as we are constantly in hospital and he is now starting on pump therapy next week . :)

[theo'smummy]

hi jackie ,
i live in luton in bedfordshire.As far as i'm aware theo is only the second child in my area to have been given funding for the pump.Not many parents are aware that it is an option.i have had a big fight on my hands for him to get it so hopefully this will calm down his bm's.they range from 2.2 to over 30.At the moment he is on glargine once a day and novorapid 3 times a day. I will go on the link you have given me. Hopefully i will meet people around theo's age as he is the youngest at the hospital.

[Jackie UK]

Hi If you have any problems signing up to the parents link let me know, I sent my email address privately but when you go to sign up my email address for contacting if there are problems are on the sign up link.


I think most of the parents on the CWD list are aware of the options but it’s getting it across to the medical professionals who dont interpret the guidance correctly at times. Which is infuriating and of course puts parents in the difficult position of having to fight for the pump.

Jackie


hi jackie ,
i live in luton in bedfordshire.As far as i'm aware theo is only the second child in my area to have been given funding for the pump.Not many parents are aware that it is an option.i have had a big fight on my hands for him to get it so hopefully this will calm down his bm's.they range from 2.2 to over 30.At the moment he is on glargine once a day and novorapid 3 times a day. I will go on the link you have given me. Hopefully i will meet people around theo's age as he is the youngest at the hospital.

[JenC]

Hi Theos Mum

Just wanted to encourage you - my daughter was the first child in Wiltshire to get funding for a pump.

She's just started on her second pump and is now at University - but she finds the pump much easier to manage than injections. I think you'll get to love it.

If you're not sure about using it - check out the Minimed/Medtronic site, there's a link there to Pumping School which is really good (and not specific to their pumps) for learning how a pump is different from injections.

All the best,
Jen

[theo'smummy]

Hi ya
Can't wait now .Start on the pump tuesday really excited now .Hope this will control his bm's . :) :) :) :)

[Tommo]

Just thought I would say Hi...I have a 2 yr old who was recently diagnosed..we live nr Harpenden. We too are going to start on the pump soon, still waiting to find out when though. Good luck with it and let us know how it goes!

[theo'smummy]

hi ya great to hear from you , well we started on the pump today. so far so good he just has saline for this week so i get used to working it. he starts on insulin next week .
just trying to get my head around all the carb counting . he doesn't seem bothered about it and hasn't touched it at all .
infact he keeps showing random people in the supermarket today which was very funny :) :) :) :) hope you get your funding for your pump ours went through really quickly. we applied end of january and had it fitted today. i have to say our dsn has been great which hospital is your son at ?

[Tommo]

glad to hear all going well so far! we are at the hemel/st albans hospital...pump should be within the next few weeks hopefully, good to hear your son doesn't mind wearing it, was a bit worried. I agree re carb counting tis hard - what I can't get my head around is how many carbs per unit....seems to change all the time..so it wouldn't help if I was top carb counter! good to know someone nearby (with the same problems :confused: )

[theo'smummy]

from what i can gather his pump works out the carb ratio to units. i input his bm and how much carbs he has had it then works out the insulin requirement . i am glad to find someone else in the same sitution as us . how long ago did find out your son was diabetic ? we found out last jan and was devasted as we have no family history of diabetes and we knew nothing about it. well if you ever need a chat you know where to find me!:) :) :)

[Tommo]

wow that sounds good..let's hope the pump does it all! We found out about Tom's diabetes in September and likewise no family history and likewise....devastated :( only just feeling like we are gaining a little control recently. Its sooo tough, turned our whole world upside down. Is your son at a nusery or anything? We can't decide what/where to send Tom now.

[theo'smummy]

hello !
theo starts nursery in september( i have been reluctant to send him anywhere cos of his diabetes).He has very poor control his normal bm's are around 15+ he has tried several differnt insulins but none seem to work for him . i am very strict with his meal times so can't understand why his levels are so bad. When he has a hypo he is so aggressive and violent i'm scared to send him to school but saying that when he is hyper he is very quiet and withdrawn so i'm damed if i do and damed if i don't.
But with the help of his nurse and hospital team school life should be great. i have already made the staff aware of his diabetes and pump so that they can all learn about it before he starts.
the first year is hard but it does get easier. i was nervous about injecting him and worried if i did something wrong , but now i like to think i'm more relaxed:p
Do you have a local support group where you can talk to other parents ?
We have one in luton and i have found it a help to talk to other mum's in the same situation.it's nice to meet someone with a child similar age to theo so you know all about the terrible two's.:eek:

[Tommo]

hiya - well done for sorting out a school! I can't even imagine how Tom will cope with school or any sort! I look forward to hearing how you find the pump next week, without the saline. I must phone again tomorrow and find out when we are due to start pumping. btw was your son diagnosed jan 06 or jan 07? I don't find Tom particularly agressive when low, its usually when he is really excited and rushing around ..take his blood and find its 2 point something!! terrible : ( when he is high he asks for juice and rubs his eyes alot...its soooo hard getting the bs right, so fragile! takes over ones whole life...but spose its slowly getting easier...when does the luton support group meet? is there any info about it online? questions... questions! hope you are having a good day

[theo'smummy]

hello ,
my son was diagnosed jan 06 .
The support group met last night over a bottle of wine so it was very relaxed. We have just decided to organise a day trip for the kids , a disco and join the luton carnival next year to make awarness of type 1 in children.
he starts his insulin next friday so fingers crossed. have just bought a book on carb counting and it is excellent it even has mcdonalds carbs in it.

[Tommo]

sounds good! keep me posted with the next meeting/happenings...would like to try and come along. I still can't get to grips with carb counting... with a 2 yr old its almost impossible cos of the amount of running about they do one minute and not the next..so even if your carb counting was A1 i can't see it would be the same from one day to the next. think our pump is coming the end of march now....

[n_K]

young people with diabetes and teenagers... not easy to control and with children, the same amount of insulin that brings me down 2mmol can be fatal and that is why the pump is good, they can deliver 0.025 of a unit, which you can never get on injections... and on injections (syringes, not pen), what looks like 1 unit might be 1.3 units, again with a possible fatal effect on small children
also a benefit that not many people relise, with injections the needles can be reused, a few times on the same person is OK but if someone else gets it... blood poisioning at least. With pump infusion sets, its not possible (unless you use the full-metal canulas) to resuse and so elimonates that as a threat