hard to control at wits end

[joshuachallis]

hi my son is type 1 and he is nearly six he has been diabetic since he was 2. we have just found out he has epilepsy aswell and i have been told 1 of his triggers is having a hypo which he always seems to have. we are in constant touch with his nurses but things just dont get much better. he is very sensitive to his insulin to little he rockets up, too much he gos below 4. he has novorapid 3 times aday and levemir 2 times aday, he keeps on getting the lumps in injection places even thou we rotate in legs bum and arms(he will not let us do it in his belly). his hba1c is always around 8% which isnt good. i am at my wits end im so scared for his future if we dont get him under control. i have asked about an insulin pump but i just keep getting told not yet. does anyone have this problem cause i dont know anyone else with diabetes and will it get easier with age?

 

[ChocFish]

Hi and welcome to the forum

Unfortunately I cannot answer your questions, I am type 2 diabetic; its just so difficult to have to cope with a child that is ill.

There are quite a few really lovely and understanding Mums of diabetic children in here and I am sure that they will be able to advise you and support you all they can and you wont be feeling so alone anymore.

All the best to you and yours

Karen x

 

[jopar]

You poor thing... To cope with diabetic care of a children is difficult at the best of times...

A lot of the suggestion I might have given such as splitting the background insulin, and perhaps either correcting or spitting a quick acting insulin to best cover some meals/foods may not be very practical for a young child... Hopefully one of the mums might see this and can provide better guidence..

As for the pump, and the benefits which sound with what you say your son would benefit vastly from, I am surprised that they aren't going forward with this..

I would suggest that you contact INPUT (easily found on the web) here you will find not only the information about pump friendly constants/clinics and funding but also contact details (John Davis, Leslie Jordan) who will be able to point you in the right direction concerning a more friendly pump clinic/consultant in your area, they also help with advice concerning putting forward your case on why a pump is a must along side help if funding from your PCT becomes a problem etc...

Another e-mailing list is www.insulin-pumpers.org for pump users along side those who are interesting in insulin pump therapy... there is a childrens section that can be joined as well, here you will find information from pumpers and other who are still fighting there battle to have one...

 

[joshuachallis]

thank you for your advice about the pump. we have split his background insulin levemir to 8 in the morning and 1 at night. and he has 3 fast acting injections novorapid with each meal of between 1 and a half units to 2 and a half units depending on blood level reading. his levels of insulin are always changing as he suffers alot from hypos or hypers there is no balance. :|

 

[suzi]

Hi Joshuachalis,
My heart goes out to all parents but especially for those whos children are diagnosed so young. You may be finding things hard now, things will improve for your wee champion in time. You've done a marvellous job so far, us Mums certainly get pulled threw the mill. I have a 10yr old who was diagnosed 3yrs ago. (tomorrow) So i can imagine what your going through.
Do you carb count? carbs can have a real dramatic effect on meals/energy/insulin, and even i find it hard to judge what effect they'l have on my son as well as what activity he does ect. No 2 children are ever the same and their requirements are often vastly different.
Any questions, ask away and we'l do our very best to answer them
Best wishes,
Suzi x

 

[joshuachallis]

i have never been asked to carb count or limit fats in his food as they said as he is still growing he needs all these things we often talk to the consultant about his food and they always say its good and healthy. i would no even know where to start on carb counting but surely it might be worth giving it ago. thankyou for your advice.

 

[suzi]

Your welcome,
i just can't imagine now injecting insulin without counting carbs first, and were only on about week 7 on our new regime. It basically works like this -for every 10g carb you inject 1u of fast acting insulin, that does'nt mean you restrict Joshuas carb, you just measure them and inject accordingly. Next time your at the clinic ask about it, that way i'm sure you'l eliminate his highs and lows, it just takes a little practice and soon becomes second nature,
Best of luck
Suzi x

 

[Jen&Khaleb]

Hi there,

I have a 2 year old who is also on Levemir and Novorapid. I can only tell you that I do find that the Levemir spikes when it first kicks in and at approximately my son's meal times (as it is meant to) and that this will sometimes cause rapid drops in bsl with the novorapid acting at the same time. I try to give him a mix of low GI and high GI food to counter act this and also be sure to give his insulin at the same time of day so the peaks don't catch me by surprise. I use pens so work in half units which are often either too much or not enough so tend to set his insulin and feed him the amount of carb to balance. I test him about 7 times a day. His last HbA1c was 8.7 but he had a million flus through Winter and I over fed him suppper sometimes ... I am a single parent and get desperate for a few nights sleep now and again. I have a much better regime at night now and he goes for his next blood test next week (fingers crossed). I would not think a child having an HbA1C around 8 would cause too many alarms. My educators would rather my son ran a bit high than have repeated hypos. My son also has Down syndrome so I am familiar with the double diagnosis that can be a bit traumatic.

I think we all have problems controlling blood sugars from time to time and it is certainly hard with a child who constantly changes how much activity they do, what they want to eat and growth spurts, hormones and who knows what else is going on in there bodies.

 

[diabetesmum]

Hi there,
I have 2 Type 1 daughters, the little one was diagnosed at 2yrs and is 7 now.

From everyhing you have said, I believe the pump is well worth a try for your child. It allows for much finer control. The Animas 2020 allows accurate delivery of as little as 0.25 of a unit if required. This should help a great deal in reducing the number and severity of hypos. I cannot understand how your clinic can keep saying 'not yet' - problems with hypos is a leading reason for qualifying for the pump. Please take the advice other posters have given you and find a clinic that is more pro-pump. You will be taught to carbohydrate count as part of your training to use the pump.

One final thought, and I may be completely wrong here, but the first time my daughter had such a severe hypo (during the night) that she had a fit/convulsion, my first thought was that she had developed epilepsy. She had not, it was that the extreme low blood sugar had caused the fit. Does your child fit at other times, or is it always related to hypos? I am not trying to second-guess the specialists, just 'thinking round' the issue.

All the best and please let us know how you get on.
Sue

 

[sabrina]

hi thank you all for your replys as its good to know that it isnt just me as sometimes thats what it feels like. as in regard to joshuas epilepsy he has had m.r.i. scan which shows his epilepsy. we also thought it was it was hypo fits but it turned out he wasnt always low when he had the fits and since he has been on the medication he has alot less and seems to be a lot better now hi im joshs mum i did it under the wrong log in

 

[Katharine]

I suspect you are not usually going over this amount in a shot of insulin but if you keep to 7 units or under for each insulin injection it greatly improves the predictablity of when the insulin will work. This is particularly important for meal insulins.

You can learn carb counting online at the "B-DEC" course. Just google it and it will come up.