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flutterfly

Diabetes

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Hi does anyone have a child that has Type 1 Diabetes?

Our daughter has just been diagnosed this week. We would love some help and advise on this subject as we new to all this stuff.

Our daughter also has ASD. She is only 8. and taking all the injections very well. :(

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phasmid   

If it is still in print try and get hold of a book called 'Diabetes at your fingertips'. It is a no-nonsense guide that is well writen and presented in user-friendly chunks. Hope that helps.

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Karen A   

Hi I have a few ideas.No personal experience.However I used to be a community nurse so have a few places you could try.Diabetes UK have a website.They are the uk organisation for people with diabetes.You could also try contact a family.I think they hold info on most medical conditions-you may find out about other groups on the website.The hospital will I hope be able to put you in contact with a diabetes specialist nurse who will provide ongoing support.Diabetes is relatively common so there will be other parents around in your area who have experience of dealing with injections,diet,exercise etc.I admitt finding other parents with children with ASD and diabetes may be a little more complex-but I am sure there will be others out there.Karen

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oracle   

I know an adult with AS and Type 1 Diabetes he actually runs the autism uk mailing list. He is a great guy :D I am almost certain that there are some parents on other groups who have children with Type 1 Diabetes and ASD.

 

I would be quite happy to cross post your original post on to these groups for you and feed any responses back to you if you would like me to?

 

Oracle

Edited by oracle

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I know an adult with AS and Type 1 Diabetes he actually runs the autism uk mailing list. He is a great guy :D I am almost certain that there are some parents on other groups who have children with Type 1 Diabetes and ASD.

 

I would be quite happy to cross post your original post on to these groups for you and feed any responses back to you if you would like me to?

 

Oracle

 

Hi i would love some help so please cross post this for me (whatever that means?)

We are having trouble trying to work out the foods she is allowed to eat.

thanks mucho.

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oracle   

Cross post means putting your posts onto other groups. I will cross post onto the Autsim UK Mailing List and the Aspergers UK Yahoo Group.

 

Oracle

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Karen A   
Hi i would love some help so please cross post this for me (whatever that means?)

We are having trouble trying to work out the foods she is allowed to eat.

thanks mucho.

 

Hi.I think it would be worth asking the Dr or nurse looking after your daughter to ask a dietician to provide you with some support.You need some individual input from a specialist.The diet needed varies from child to child depending on things like exercise.Although people can offer support I think you will need an individual assessment-especially if your child is still having insulin injections.It will be more complicated if she has food preferences related to ASD.If your daughter is not in hospital now ask the Gp or practice nurse to do a refferal.Karen

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Hi - new here.

I have a 15yo son ASD with type1 diabetes (diagnosed 13 months ago). He took to injections very well, has meals at set times and I guess because of the ASD likes the routine. We have access to a Diabetes Nurse and dietician who we saw from day 1 ,otherwise we would have been totally lost. A good book to read : "Type 1 Diabetes in children,adolescents and young adults" by Dr Ragnar Hanas (Is it OK to advise on reading material?)

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Thanks Milliecat. will look for the book now.

Only having trouble really with the food side of things!!!

What foods can she eat whenever she wants?? can she have a mini sweet without giving insulin?

We doing ok with the injections just feel really bad when she asks for chocolate. :(

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Hi flutterfly,

I think every child is different in the way their bodies react to food and insulin (if you know what I mean?). I'm assuming you are on a regime of one long-acting insulin(at the same time every day) and one short acting (to be given at each meal).I can only tell you how we deal with food and it will be different for everybody as Karen A has posted.

My son has three meals a day(with insulin) and one snack mid afternoon(no insulin). In the beginning he had a mid morning snack as well (no insulin) , but we dropped that as his blood sugar was high at lunch. As far as chocolate goes we agreed on chocolate once a week and at the same time as a meal so that it could be included in the insulin dose. He does like chocolate and it makes it a special day somehow. Also at bedtime he has a late snack( no insulin) to stop night time lows and this includes 'chocolate milk' made with milk and Options and that seems to satisfy the need for chocolate.

 

My son is a teenager going through puberty and some of the advice given to younger children may be different because puberty affects diabetes. I only know how to treat my son's diabetes and he is a teenager so some things may be done differently with younger children. I wonder if there are any younger ASD children with diabetes out there?

Best wishes >:D<<'> >:D<<'>

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Yeap, there is. My son has Asperger's, ODD and diabetes type 1. He has had diabetes now for 8 years, giving me experience from the age of 5 to 13. I haven't often got the chance to come on the forum (which is addictive and hence a quick 5 minute check never seems to work), so pm'ing me and then going via email will give you the quickest response. I am happy to help where I can, though others are right also and you need your own diabetes nurse, dietician etc, but I also know they can be hard to come by!

 

Chocolate, it does indeed depend on your child's insulin regime, which I assume at this age is 2 a day? A good way to do it is to say he can get some when his bloodsugars are low. At least this sometimes works for me, as exercise lowers the bloodsugars and hence my son (who is not of the active sort) will actually get some exercise because he wants the chocolate.

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Thanks for that advice. we have the diabetic nurse coming out tomorrow to see us.

the next thing i have worrys about is the school?

I know they can do it but to me i will always worry that they cant do her jabs soft enough for me.

i will be worrying all day till she comes home.

she not at school yet maybe next week if we feel brave enough??????

I think its all about trust. but do i trust them enough. Im just worrying too much i think?

As they other problem is the school bus/taxi she was attacked on there about 3 weeks ago.

I cant trust the escort or driver now. even worse since shes be diagnosed diabetic.

How can i trust them to help my daughter if her sugar goes low when she couldnt help her when she was getting attacked????

I just dont know anymore.... :crying:

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nellie   

Flutterfly, >:D<<'> >:D<<'>

 

I'm so sorry you're having a really rough time, I hope the diabetic nurse is able to give you some good support and advice.

 

Nellie >:D<<'>

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Flutterfly ,

I also hope the nurse will be able to help with all these questions.

I know that we couldn't do without ours , she has been invaluable for information , support and reassurance. Here , the nurses go into the schools to teach about diabetes,perhaps this could also happen with the taxi??

It is natural to be so worried , especially at this very early stage ( even my son 13 months later is still called 'recently diagnosed'). There is a lot to learn and we were given information in small stages because there is so much to learn. At the time , I thought 'why aren't they telling me eveything - I'm not stupid' , but , looking back , it was the best way to get the information, as we could have been easily overloaded.

It has got better over a period of time , for me I had to recognise that it is a long term learning process.

Good luck tomorrow >:D<<'>

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Flutterfly, how many injections is she getting? They normally work it so there is no need for injections during school time. Also, you can ask the nurse to adjust the dosage so she is running a little bit 'high' for a week or so, so everyone can adjust to her being diabetic without having to worry overmuch about hypos. There are also booklets you can get from Diabetic UK, to give to other people like the taxi drivers, so they can learn more about it and recognise hypos.

Does she have a statement? If so, make sure they amend it to include her diabetes. Has her school had children with diabetes before? If so, that would help, though they'll need to be aware that because your daughter is autistic, the 'rules' change somewhat.

Is it an option for her to stay home for a few weeks so you can all get used (a little bit anyway) to the new situation and adjust, and to give time for meetings with the school etc?

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Does any one know how heritable Type 1 diabetes is?

 

My ex has it (but not dx til his 30's), and he has just told the kids they have a 50% chance of developing it.

I know the late-onset type may be inherited, but I didn't think Type 1 could be.

 

If it is - is there anything we can do/avoid to make it less likely to develop?

 

Thanks

 

Karen

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Off the top of my head, yes diabetes runs in families, so there is a higher risk of developing it. Exact figures? I doubt anyone knows, as they are still somewhat unsure what causes it in the first place.

What to do to avoid? All the general good health stuff, like don't smoke, don't drink too much, and especially do not be overweight.

For exact info though, check out: www.diabetes.org.uk (the diabetes UK website, but it doesn't seem to be working properly right now),

and I have just come across this one, though have no idea if they're any good: children with diabetes

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