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15 year old daughter Type 1, always ill-Not eating.

M

Mickroberts

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United Kingdom
She got diagnosed 2 years ago, trying to manage it without insulin, doing exercise & not eating a lot.
Getting to the stage now where she's always ill, in hospital for infections, can't fight anything off, has muscle cramps, aches, keytones were high the other day with sugar level of 3.8.

We're trying to tell her she's got to eat for the body to fight these things off, & got to have the injections & food to keep her body alive. She wants to remain slim, but is looking too skinny. She's worried about the inuslin putting on weight.

This is my first post, not sure how to use this site yet. Has anyone any experience of the above. ie. If the kid don't eat to avoid injections, is it dead common for them to always be ill in bed, time off school etc.
 
Hi Mick.
Welcome to the forum.

Not quite sure what you mean when you say, " trying to manage it without insulin ? "

As a T1 she cannot manage it without Insulin, the doseage might change but she can never do without it ?
Things like diet and keeping good control of her Bg levels will also help. Injections for a T1 are a way of life, the doorway to life in fact. It is little wonder she is always ill if that is what she is doing ?

Have you discussed this with your GP or DSN ? You must get this sorted out ASAP. A T1 can rapidly go downhill if it is not treated promptly. It can get very serious. It sounds like she needs some specialist help to come to terms with the Diabetes and what it means to her health. What she HAS to do.
 
I am surprised that the hosptial hasn't picked up that your daughter has a problem, a serious one that needs help starting today not next week...

I would assume that when your daughter is in hosptial that she is following her regime with injections etc, and not teling then how she handles her diabetic control when she is home!

If this is so, you must make the professionals aware what is in fact happening, because it could well be that your daughter has a underlying eating disorder which would explain the fear of weight gain... And using her diabetes to aid her and hide what is truley underlying her problems..

Fear of injecting can be over come in many ways, for instance an insulin pump that cuts back on the actual injection required, an very fine small cannular is inserted every 2-3days.. And it can provide very fine tuned delivery of insulin which would avoid weight issues...

what needs to be sorted out is, has your daughter got a problems with her diabetes or has she actualy got an eating disorder and is using the diabetes to meet her own ends!

Make the phone call today to your GP as either one of these really needs professional help to resolve her issuse..
 
Hi Mick

Welcome to the forum.

I'm sorry to hear your daughter is having a hard time of it. It must be difficult for you to know how to help her if she won't take her insulin or eat properly.

It sounds like your daughter may have an underlying eating disorder and is using her diabetes to help stay slim. Weight issues are very common among teenage girls and around 1/3 of diabetic teenage girls are said to be affected by disordered eating and injecting patterns.

There is actually a name for this 'Diabulimia" and it is something that your daughter's consultant and nurse should be very aware of. Here's a bit of info about it from this site....
http://www.diabetes.co.uk/Diabetes-and-Diabulimia.html

In the short term, your daughter is already experiencing the effects of high blood sugars (sick all the time, too weak to fight infections etc.) but in the long term she could be doing herself some real damage as high blood sugars lead to diabetic complications like blindness, nerve damage and kidney damage.

Could you contact your daughter's GP ASAP and explain the situation and ask for help? The GP should be able to refer your daughter for specialist help. Adolescence is hard enough to deal with but diabetes adds in that extra complication. Perhaps your daughter just needs someone she can talk to who can help her come to terms with her diabetes and body image and what she needs to do to stay well.

Some diabetic teams have a psychologist attached to the unit. If the GP isn't much help then another alternative would be to ring up the hospital's diabetic specialist nurse and ask what help they can provide for your daughter.

Goji
 
Goli got it right
It's fairly common for T1 girls to give up on injecting insulin, to stay thin. T1 CANNOT be controlled by diet alone.

I ssaw an interview with a T1 girl a while ago, 2who stopped taking insulin, to say thin and went blind quite soon after. It may not be quick in every case, but it's a risk.
Your daughter needs to see the doctor about what is essentially an eating disorder.
you might try contacting diabetes Uk about their services for teen agers. they might well have something that can help. The services for kids are good.
Hana
 
More information, + some replies to your comments-And any more advice from u lot much appreciated.

When she first got diagnosed, she got told to inject 4 times a day etc. Well, she found that doing it the 'strict nurses' way, the insulin was bringing her levels down too low, she then had to have something to eat to bring the levels back up & within 2 weeks, she'd put on a stone. And she has always been fit, slim (not skinny) etc.

So for a while, plus as well as the pancreas still working slightly for the first 18 months or so, she found out she could reduce her carbs right down, exercise at the right times, she wasn't having to take any insulin as her HB1 leve's were good at about 5.5.

She's not obsessed with her weight in terms of she doesn't want to be skinny, just slim like she was before. She is also a dancer so is body conscious. The Doctors are happy with her diabetes control. She is still producing some insuling from her pancreas. The only times she needs insulin is when she is ill.

So it's not an eating disorder as such, only that she knows if she eats loads, she has to inject, then has to eat again if the insuling brings her level too low.
She hasn't had high blood sugars. The Doctor's aren't great to be fair, & all the diabetic nurse keeps saying is eat your 5 fruit & veg a day.

She is telling the hospital how she handles her diabetes.
 
You really need to get to speak to a doctor or nurse who can help you, I can see the reason why she does not want to eat, but what she is doing at the moment is going to cause long term complications for her and thats something she really does not want. Like the others have said type 1 needs to take insulin.

is she definatley type 1 ? and have the doctors got her condition right? I know that sounds daft but they are known to get things wrong.

Its a real pain when doctors / nurses will not listen, maybe the NHS helpline could help or put you intouch with someone local to you that can. 0845 4647 :)
 
Hi Mick,
Your having it tough, and i do sympathise. I as a parent of a 10yr boy have very few problems yet! i can only imagine the frustration of watching your daughter fading away. She does need specialist help, with a good dietician, her DN, main diabetic consultant and perhaps even a phyciatrist. Diabetes is a tough game to follow, but injecting insulin she must. It's like fueling a car, she needs to put the right nutriants into her growing body and the correct dosage of insulin. On 4 injections a day, i would assume she is having a basal, and bolus before/after food. She needs help to get the balance right, to learn to carb count and inject accordingly, done correctly she will not gain extra weight.
If she continues to do this, she is at risk of stopping her periods, growth will be affected and the risk of osteoparosis is greater in later life. Sorry if i've been harsh, i do not wish to sound as if i'm lecturing you, but i have seen a teenager go through this and the end result was heartbreaking.
If you can give us an idea of her insulin, daily diet and regime, we'll try and be as helpful as possible.
Regards,
Suzi x
 
is she definatley type 1 ? and have the doctors got her condition right?

Well, this was something that has been asked for the past 2 years as she has managed it largely without having to inject. All the Doctors have been baffled as well, as they have never known anyone who can manage Type 1 with diet & exercise like our daughter.
The wife has just come off the phone from the diabetic nurse & she has said our daughter is a unique case, whereas as yet, they still don't have all the answers.

She normally only needs insulin when ill.

She & the wife are very good at carb counting, & apparently, it is very common for girls to put weight on when they get diabetes Type 1-All the girls she knows that have type 1 have put lots of weight on, so is inclined to not listen to them.

Up to the last couple of weeks, she was having a big bowl of cereal with Muller yoghurt, cereal bar at dinner, then having chicken/breadcrums at 5pmish.

The gym cardio at 4pm, & sit-ups & star-jumps about 6pm
 
I'm not a type one but will ask a question. Has she had C peptide tests to see how much of her own insulin she is still producing ? Maybe some of the type one's can elaborate on this.
 
Thats completely baffled me, a T1 who doesn't need to inject. What are her bs readings before meals and 2hrs after meals. I'd be looking for the hospital to do further tests.
Re keytones with bs of 3.8, indicates starvation keytones, especially accompanied with low blood sugar if shes not eating much. Strict dieters and low carbers often have keytones, so i'm told.
I honestly don't know what else to say (which is a first for me) I'm stumped.
Keep pestering her consultant till you get the right answers, my son has quartely hospital consultations and his DN will pop round any time, are yours as helpful?
Suzi x
 
Wife doesn't know, but nurses says she is still producing insulin.
B4 meals, she can be low between 3&5. By the next meal, same again with no insulin when she is active & out & about doing stuff.
Nurses are not classing it as starvation keytones, did all the tests b4.
DN's are helpful, Normal consultants don't seem to understand.
 
Mickroberts said:
Up to the last couple of weeks, she was having a big bowl of cereal with Muller yoghurt, cereal bar at dinner, then having chicken/breadcrums at 5pmish.

The gym cardio at 4pm, & sit-ups & star-jumps about 6pm
Click to expand...

Hi Mick

Is the yoghurt/cereal bar and chicken/breadcrumbs all she would eat in a day? :shock:

If so then it would seem like she really isn't getting enough food or the nutrients she needs to stay healthy. What about fruit and veg (or just veg if she's an avid low carber)?

I understand she doesn't want to gain weight, but avoiding eating in order to avoid injections and subsequent weight gain isn't going to do her any good in the long-term.

Maybe she could get a half-unit pen so that she can just give herself very small doses that are fine-tuned to her food intake?
 
Hi Mick,
I would say that those ketones are a big warning sign. As I understand it, her own insulin production will drop and drop. Eventually she will develop ketoacidosis if she does not inject insulin. At some point it will not be 'optional' any longer to avoid her injections. Ketoacidosis can be fatal and things can deteriorate with frightening speed once the process starts, so she is potentially in a very serious situation. I hope you manage to get things sorted out soon. Keep us posted.
Best wishes,
Sue
 
I was diagnosed early on (5 years old)
some times its not just the fact that you feel that you have no control anymore but also that you just get depresed with the constant injecting and blood tests. May be your daughter needs to talk to someone who has been through what she is going through now? Also it may interest you and her to know that a lot of diabetics have an underactive thyrod gland, this is one of the reasons we put on weight (you see even with a good diet its not always the insulin that puts on the fat). If she wants to talk please dont hesitste to contact me (I stopped taking my insulin for 2 years and the wake up call was being rushed into hospital and put on the critical list> Not a good way to spend a christmas!!!!)
 
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