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brittle diabetes-heeeeelp!!!

E

elena

Newbie
Messages
3
Location
wales uk
hello everyone,
my daughter,Diana,is 11 years old.since April '07 she have type 1 diabetes.the BG test results was never under the normal limits but since May this year is very high and very low in matter of hours.
i have my daughter more in hospital than at home and she is missing school.since Diana was diagnosed with diabetes she had lots of problems at school regarding her illness.i moved her to another school but Diana is not trusting anyone.recently we went to a diabetes clinic appointment and the specialist doctor accused my daughter of been 'a typical teenager who skip injections and do not eat to be slim'.3 times we stay in hospital for a week to monitor her BG and the cabs /diet regime.
every time the dietitian said that we do everything correct ,the specialist did not bother to come to any conclusion apart from repeating his opinion regarding 'typical teenager' and we come back home more mixed up and confused.today Diana,s BG in the morning was 5 at 8 am and at 10.30 the school phone me that the BG is 21.9,Diana is in tears and headache.i took her to the GP and i was told that is possible? Diana to have brittle diabetes.i got in touch with a clinic where to have blood tests related to brittle and see from there what we do next.i arranged for my daughter to be transfer to another specialist and to see a psychologist but i will be very grateful if i can have more info to help me to understand and what to do if(i pray is not)Diana have brittle diabetes.
many thanks,
Diana's mum
 
what sort of regime does Diana use to control her diabetes?

Sarah is still growing, so her needs will change very quickly indeed so can make it very difficut to match insulin requirements to her needs...

If you can post some information of what regime that Diana is using, then hopefully we may come up with some ideas that might help with control..

Have you considered the insulin pump as a option, the pump would react much quicker to the ever changing needs that she has at the moment..

Sometimes consultants do tar everyone with one brush which isn't helpfull to anyone, so try to put that behind you the best you can..
 
hi Jopar,
thank u for the message,i realy apreciate because i am loosing confidence more and more every day.Diana's regime is 'cabs counting' and she is on lantus 20 u/24 hours and humalog 1.5 u per 10 grams of cabs .we tried 1 u per 15 cabs ,1u per 10 cabs.in the begining Diana was was on humalog mix 25 but did not work. the nurse aranged for Diana to have a insulin pump a.s.a.p but the specialist did not agreed.
i done some training 'on line' with minimed .com.for a paradigm 722 pump and i supose to start training with the nurse but the doctor did not agreed.
i have money to buy the pump but i cannot have the training and suplies via nhs and .....if u need any extra info please let me know and i thank u so much.
regards,
elena
 
Basal/bolus regime is good...

Are you finding that if she having hypo or lows that these are pretty consistent with times of day i.e she tend to hypo in the morning or after tea same with highs... This could suggest that the Lantus is the course of the problem with having too much swimmming around or too little swimming around! The only real way of finding out this is carrying out fasting test...

You mention that you have tried different carb ratio's, I'm assuminng that this has been on the bases that it's been all 1u-10g then 1.5un per10g carbs etc... One standard for each meal throughtout the day? It might be that she needs to have a different carb ratio per different time of day or meal? So she could end up with something like 1.5u to 10g at breakfast but for dinner she is 1u per 10g and at tea she again 1.5u per 10g..

If you and your daughter feel that the pump would give a good solution, then keep asking and fighting for it, take a look at the NICE guideines this will show you what the PCT have to do... It took me 2 1/2 years of battleing to get mine, at time I thought I would never succeed but I did....
 
elena said:
hi Jopar,
thank u for the message,i realy apreciate because i am loosing confidence more and more every day.Diana's regime is 'cabs counting' and she is on lantus 20 u/24 hours and humalog 1.5 u per 10 grams of cabs .we tried 1 u per 15 cabs ,1u per 10 cabs.in the begining Diana was was on humalog mix 25 but did not work. the nurse aranged for Diana to have a insulin pump a.s.a.p but the specialist did not agreed.
i done some training 'on line' with minimed .com.for a paradigm 722 pump and i supose to start training with the nurse but the doctor did not agreed.
i have money to buy the pump but i cannot have the training and suplies via nhs and .....if u need any extra info please let me know and i thank u so much.
regards,
elena
Click to expand...

Hello Elena

Although a pump might help your daughter get better control of her bg, it will only work if she is willing to press the right buttons at the right time and do all the necessary bg tests. It might be that your consultant doesn't think Diana will be motivated enough so that is why he has done a thumbs down. I think you need to speak more seriously with him but if you still get no joy, then a change to a consultant who does support pump therapy will be necessary.

In the meantime you have got to try and help your daughter get her bg levels a bit lower. Sometimes, as good as they might appear to be using insulin to carb ratios, they are not always accurate so you have to use guesswork and learn from trial and error. For your daughter's bg to be so high after breakfast, it's probably down to an inaccurate bolus being done. You can always use more bolus at breakfast to see how things go. I doubt if she is a 'brittle diabetic'. There are loads of insulins available now so you could ask to change to another fast acting insulin which might lower Diana's bg a bit quicker or consider giving the basal Lantus twice per day instead of just once. Lantus doesn't really cover 24hrs. At best, a single dose will only be active for about 15hrs,then will tail off. Most people using Lantus once per day usually find that they have to increase their bolus to cover Lantus's lack of background. Is your daughter using Novorapid as the bolus?
 
Hi Diana's Mum
I can only imagine how worried you are.
I have another thought for you though. Diana is 11 you say, could it be "puberty"?
Constantly changing hormones and rapid growth.
How often does diana test?
Frequent testing and dividing up her insulin doses might work. It wouldn't be easy, but I suspect that all will improve after Diana's body settles down to adulthood.
 
hi everyone,
i try to answer to all in the same message and i thank u all for the input. :)
hi SarahQ,
i feel more optimistic cos the school and the GP is helping us so much since i discharged my daughter from that specialist .
we will see very soon a pediatrician and a independent specialist for a second opinion plus Diana was refereed to a different clinic at my request.
i did beg and demand for a pump and the answer from the doctor was that if he can he will put Diana into ''care''.i am against violence but i did wish that i was physically strong enough to make him ask for some care. :oops: (i am physically disable but the thought has was :D )
hi iHs,
thank u for the advice on lantus.Diana is having it at 8 p.m./24 h.
hi hanadr,
the worst part was when the dr. did not believe us .i love my child very much but by hiding the truth i do not help my daughter and when i know that i always said the truth even when my daughter done something ''bad'' i reach the point when i did not know what to do.is horrible when u feel hopeless and helpless...i hope that we do not go thru something like that again .
''puberty?''YES!!! since last year and we take notes of any change and development,so far nothing was done even when we had some crises.
Diana is testing her BG around 10 per day.we do a test at 3 a.m. when the bg is or high or a hypo and Diana do not have warnings.
 
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