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Diabetic child with learning difficulties

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LynnAllan

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Relationship to Diabetes
Parent of person with diabetes
Hi,

I'm looking for support with this. My child was born with a genetic condition affecting growth and appetite. She also has an information processing issue so no matter how things are explained they don't stick. She's also already 5ft 7inch and she's 11. We are trying to find ways for helping her deal with her food intake and being honest about what she is eating.

We are still in our first year of dealing with the diabetes, and have just started carb counting. How do you deal with the foods you don't know about? How do you get your child to be honest about what they are eating? How do you help them come to terms with this condition?

Thanks, Lynn
 
Dear Lynn
Welcome to the forum. It must be very hard for your daughter having 2 conditions that impact on each other so much :(
I can't help from personal experience with this, but I did have a few thoughts (which I expect you've already tried, but here goes anyway).
I suppose you could lock away foods so she can't access them without you there, and then you can help her take appropriate insulin for them/choose the most appropriate snacks. Would she understand if you explained that it's not because you don't trust her, but because she needs to have insulin when she eats or she could be very poorly/needs to control her calorie intake for her health? The other possibility is to have only low carb stuff accessible, but I realise that's not very practical. On the honesty thing, I suppose she is worried that you'll say 'no'; if you can show her that you can say 'yes' within certain boundaries it might help.
How does she manage at school? If distraction works I suppose you could try to have her busy with activities as much as possible, but that's exhausting for everyone too.
I have a 15 year-old son who does like to help himself to snacks occasionally, but he's good about injecting for them. Also he is fortunate to be slim/have a fast metabolism, so it's not really a problem for him.
Hopefully someone else will chime in with some more ideas for you.
Catherine
 
Thanks for getting back to me Willsmum. Thank you for your comments. It's nice to get support. I'll add my responses below as it's probably easier.
Willsmum said:
Dear Lynn
Welcome to the forum. It must be very hard for your daughter having 2 conditions that impact on each other so much :(
I can't help from personal experience with this, but I did have a few thoughts (which I expect you've already tried, but here goes anyway).
I suppose you could lock away foods so she can't access them without you there, and then you can help her take appropriate insulin for them/choose the most appropriate snacks. Would she understand if you explained that it's not because you don't trust her, but because she needs to have insulin when she eats or she could be very poorly/needs to control her calorie intake for her health? The other possibility is to have only low carb stuff accessible, but I realise that's not very practical. On the honesty thing, I suppose she is worried that you'll say 'no'; if you can show her that you can say 'yes' within certain boundaries it might help. The learning condition my daughter has means that we have these conversations constantly and she gets it. Then she goes away and the information is gone. We can repeat ourselves till we are blue in the face but it won't stick. The paed consultant isn't sure if it will ever stick. We may have to lock the kitchen door. We have 2 other children who are not diabetic and all this has a huge impact.
How does she manage at school? If distraction works I suppose you could try to have her busy with activities as much as possible, but that's exhausting for everyone too. We pack her lunch now and carb count so she gets the correct insulin dose. She doesn't have access to naything else.
I have a 15 year-old son who does like to help himself to snacks occasionally, but he's good about injecting for them. Also he is fortunate to be slim/have a fast metabolism, so it's not really a problem for him.
Hopefully someone else will chime in with some more ideas for you.
Catherine
Click to expand...

The answer may be that we keep talking to her and lock the kitchen door. It's frustrating and overwhelming to have so much going on. It's not fair on her, poor kid. We seem to be constantly on her back but what else can we do :confused:
 
If she understands on a one-off level then it does sound like locking the door and explaining it every time would work best, so hard for you all though. Have you been getting any respite or support?
 
Willsmum said:
If she understands on a one-off level then it does sound like locking the door and explaining it every time would work best, so hard for you all though. Have you been getting any respite or support?
Click to expand...

No respite or support. I was told that if she had a tracheostomy or other obvious support requirement then yes, the support would be available. But because it is a hidden disability then no.

I'm hoping these forums will help as I feel so isolated sometimes. I guess I need to know what's 'normal' for an 11 yr old girl facing puberty, what's normal for a child with information processing issues and then try to figure out how to get my head around things.

We have friends that will babysit for us, but that's a heck of a requirement, asking them to monitor this. Especially if we can't get our head around it.
 
Maybe get the friends round as a sort of 'training' so they and you and your daughter feel confident enough to babysit eventually? I have a friend whose son has something called Angelman's which is a very profound learning disability, and they do this. It helps them all a lot and their son has a good time with the friends, but there was a lot to learn initially. I do think they see it as a lifeline now. Otherwise there may be a few charities that might help even if the local authority definition of disability doesn't fit your daughter :(
I think diabetes can cause a lot of angst in teens, even without the information processing issues. There's a charity called DWED (diabetics with eating disorders) who might offer some insight into the hiding food/being honest issues, although their focus is on T1s who use insulin to stay thin (by not dosing enough and then risking long term complications). But I imagine that quite a lot of hiding problems/subterfuge goes on, so they may have some useful strategies? See
www.dwed.org.uk
Catherine
 
Good luck with this lynn. Beeing a teenager is bad enough. Please keep us imformed how you are getting on & we will try to come up with some help 🙂
 
Thanks Hobie. It can feel so isolating and the stress is having a bad effect on me. Hopefully with support from others I will be able to cope better which will help her 😱
 
Hi Lynn and welcome to the forum 🙂

Sorry to hear of your struggles and isolation .


Just a thought, if your daughter struggles to retain info, can you leave her some visual prompts or reminders in the kitchen ? Or a choice of snacks roughly the same carbs so she has choice but you can manage it, something you can monitor more easily ? Just trying to think of some ways you can control this without her feeling she has none IYKWIM.


Hope you are able to find some ways to make it easier on all of you x
 
Thanks Hanmillmum. We will probably get to that. She's a bit more honest now she knows she can eat practically anything she wants, which includes 2 toast and 2 biscuits for supper. We will top up the insulin for the toast and give her levemir as normal for the biscuits.

What a learning curve!
 
Lynn - Levemir doesn't 'deal with' the biscuits! It isn't even supposed to.

It only deals with our background needs - ie getting glucose into the cells that need it constantly - things like your brain. heart, lungs, kidneys, intestines ......... you get the picture? It should keep your BG stable 24/24 - as long as you don't eat anything and don't move LOL

Then when you eat, you need insulin to 'deal with' the food, so you inject fast-acting insulin.

Diabetically speaking, the reason children are recommended bedtime snacks is because there is a chance (if they have BG control fairly close to 'normal') then there's always a chance they could go hypo when the middle of the night comes and everyone's BG is naturally at it's lowest.

If the Levemir dose has been calculated to 'include' the biscuits, then the bedtime snack would always have to be more or less the same amount of carbs, unless you change the Lev dose when it isn't. So in that case - yes she could have toast, or whatever - but only to the same carb value as the biscuits which the dose has been calculated to include.

2 rounds of toast = 30g, 2 (plain) Hob Nobs = 20g. 2 choc HNs = 24g.

If the difference in carbs as compared to insulin dose was 10g, that would see an increase of 3.0 on my meter, or 6g would increase it by 2.0. Not gonna kill me I agree, but I wouldn't want to do it every day!

I see someone on another forum recommended the Ragnar Hanas book - I urge you to read it!
 
Hi Lynn, I can't be much help with a lot of what you have described, particularly as I am fairly new to this myself, but I may be able to help or at least share issues and experiences on the child going through puberty bit. My daughter is just 12 and in the very early stages of puberty and it is already bringing certain challenges like days of sudden unexplained constant high bgs which result in us continually administering correction doses even through the night - exhausting. We will all help in any way we can. X
 
Thank you!

Had a hypo yesterday which I need to post separately as there's so much involved. I agree Amanda, it's exhausting. :(
 
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