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Newly diagnosed daughter. What should we expect?

D

Deb Arkle

Well-Known Member
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47
Hi - my 6YO daughter was diagnosed with type 1 diabetes on Tuesday. We have all the stuff from the hospital, and we're getting used to the monitoring & injections etc. But what we're wanting to know is - how will this affect her/our lives in general? We're really after just a general overview, a lot of the threads on here are about specific topics but I was kind of hoping someone could just summarise the sort of things which might happen in the future, and anything we should be aware of - eg is she likely to put on weight in her teens? how does it affect holidays? etc - that sort of thing.

Thanks in advance for any replies. :D
 
Hi Deb,
I would be interested in this too as our daughter was diagnosed in June, she is 7, and so far we are coping OK. she still has levels all over the place but its getting easier to correct at the next test. We have only been away in the caravan a couple of times since she was diagnosed and we have not found this a problem but going abroad would be different im sure.
I'm sure that things will get to be second nature but for now .....

regards
Harry
 
Firstly can i say i'm sorry to hear that and whilst it will change things in your family life once you get your head around things life will begin to get back to normality.

I was diagnosed about a year ago and it is a shock to the system and I presume it would be more upsetting if it is your child rather than yourself.

Over the next few years it will probably be your responsibility to care for your child and as she gets older gradually hand it over to her, Over the next few years I think education is the key to allow her to gain the skills to successfully deal with this.

I would take it a day at a time get as much info as possible. To start with here are a few places to look.

This website is invaluable

Diabetes uk website. think about the support groups they run in your area,

I would buy a book by ragnor hanas type 1 diabetes in children and adolescents, It is a handbook with pretty much everything you need to know in any situation. Its been invaluable to me.

There are lots more good books but dont get too bogged down too soon.

Visit and talk to your diabetic specialist nurse. I have mine on speed dial and she is brilliant. They are much more knowledgeble than your GP.

in the coming weeks and months just test test test. Write down everything - blood levels before and after meals, food diary to see what causes spikes. take all the info back to the nurse and before you know it they'll have you on the optimal routine.

Also give the school and class teacher as much info as possible. insist that they keep glucose and a glucagon injection in school and that staff know how to use it. I'm a teacher and i've had kids with T1 in the past. Suppose they were lucky cos I could spot a hypo a mile off.

anyway there is a bit to get you started.

Any questions just ask?

ps take her to lots of fun places to cheer her up. just hold back on the sweets(unless shes low)

Andy
 
Thanks Andy - I'll definitely invest in that book, sounds good! Thanks for the advice, I feel a bit like a newly blind person trying to feel my way around.....we'll get there though. :D

PS - Hi, Hazza! :D
 
i looked on amazon and ebay the ragnar hanas book is about £18. best buy of your life. I'll even buy it for you cos I want the best for anyone with diabetes.

try not to worry too much
 
Thanks again - you sound like me when I recommend the Alan Carr stopping smoking book, I'm convinced! I've ordered it, and will look forward to reading it.
 
good stuff.

dont be afraid children are intelligent and recipient. i have a child in my class who is only 9 who's parent is t1 yet they know everything about it and can deal with any situation. kids are amazing and versatile. i'm sure yours will become a professor.

andy.
 
Hello,

In our case it turned our lifes upside down. My middle boy, then 5yo, was diagnosed 5 months ago and we passed through all the stages of a shock. Denial, anger, blame, depression, acceptance and now we are fighting. I don't know what will come next.

Now we are amateur researchers (fortunately my wife has a medicine related degree) and at the moment we are trying to understand why and then see if we can find the most effective way of minimising its effects.

There are lots of research papers out there but the most striking for me are the ones that establish a connection between Vitamin D defficiency and T1. The other thing we found that challenges what we were told is that B-cells appear to continue reproducing during lifetime, although the immune system kills them soon.

In the meantime, our diets have changed radically and we have eliminated processed food and refined carbohydrates from our table. We eat healthy, home cooked food and have reeducated our three children to eat salads and uncooked vegetables when possible. Personally I am aiming to become vegetarian, though I have a bit of fish from times to times. We don't believe that being "normal" is what we should aim to.

So far, we are achieving brilliant results (we still have some inexplicable up and downs but nowhere near the figures we had in the past) and in my son's last hospital appointment he was found to have a good HbA1c (an average measure of how well is the glucose controlled in the last 8-12 weeks) within the range of a non-diabetic person. And my son has only two units of insulin a day (lantus...a long duration one) more as a prevention, hence no more hypos.

Anyway...we have a long long fight in front of us....but my son's life is worth every second of it...and I am sure my other two children are benefiting from our changes.

Best of luck and just let me know if you want more information.
 
I am 3 years into having a diabetic child. I don't think it has actually stopped us doing anything in particular but we certainly have to do a lot more planning. Holidays do require extra packing and consideration. While you are away there is usually some extra testing because of the excitment and exercise. This can work out well because you can often give extra treats without affecting blood levels. I have not been overseas with Khaleb but changing time zones would need to be factored into bsl's.

I carry a fair amount of stuff everywhere I go even if, most of the time, I never use it.

I have lost untold amounts of sleep from Khaleb being diabetic and checking his blood sugar through the night.

Illnesses are never just illnesses anymore with managing blood sugar levels as well as whatever symptoms the disease has brought.

If diabetes is managed correctly you shouldn't have a weight problem and this obviously needs monitoring so you don't fall into the trap of 'feeding the insulin' rather than 'feeding the child'.

If you want to do something you just have to plan for how you are going to manage blood sugar at the same time. The other difference is the 3 monthly trip to clinic and who can babysit for you.

Well, that's a quick overview.
 
Thanks for the replies everyone. We're gradually getting our heads round all this, it'll be second nature soon I'm sure. :)
 
Hi Deb, I'm sure that you will find that you have everything sussed re getting her numbers down and then find that her insulin ratios change as her body stops producing insulin. (honeymoon period).
We have changed Lily's ratios, with the help of our DSN, and think that they need changing again as her numbers are going up again. We seem to be correcting for every meal at the minute.
Lily eats pretty much what she wants, at least it is the same as other kids her age. We have got our heads around going out for meals and I can recommend a book called "Carbs and Cals", it is a great help in visualising the portion sizes of some of the more common foods. It is full of pictures and is great for carrying around. I found it recommended on a forum in the early days after diagnosis.

Hope this helps, every day seems to bring a new challenge but I guess that eventually it will settle into a kind of routine.

We are hoping to get Lily onto a pump, hopefully before Christmas but there are a few others in front of us and the nurses are really stretched at the minute as there have been quite a few kids in our area newly diagnosed over the six week holiday.

All the best

Harry :)
 
Hope your family has had a good weekend? Hope it resembled some normality. Just to reaffirm if you need any support everyone on here i'm sure is willing to help.
 
Thanks Andy. We're getting there - went out for lunch yesterday and I forgot to take her needles, oops! :shock: We just ate & then dashed home for her jab. Started carb counting today and her BG has gone low (3.3) so have applied apple juice & haribo, she seems to be returning to normal now. Phew! It's like being back at college, there's so much to remember....I'm looking forward to the time it becomes second nature! :D

PS - Ragnar Hanas book arrived today, that'll keep me busy reading it!
 
I find it easiest to keep everything i need in one bag, even around the house everything stays in that one bag. I have my pens, needles, BG testing kit, some glucose tablets....

Then i just have a quick rifle through it before i go out to make sure it's all there and just grab that bag.
Carb counting is so useful, but honestly, her control will be absolutly terrible for a while, so do not worry about it !
Her body is still recovering, she's getting used to it, you're getting used to it, and her insulin cells are stil working, as and when they can be bothered, they won't give you any warning, they'll just be all over the place.

Getting used to dealing with the fluctuations is much more important than preventing them, because if she's got a lot of beta cells still working, you won't be able to get absolutely perfect control...

Expect the unexpected.... and help her to help herself as much as possible. She's only young, but she can still help calculate the insulin, read the numbers etc..... it's very important to get her as much involved as you can so it's as normal for her as possible.
Good luck, and give her a hug :)
 
Thanks for that, Celtic - that would probs explain her sudden low yesterday, it hadn't occurred to me that she'd stil be producing the odd blob of insulin.

She's wanting to get involved in her treatment already, keeping her own diary of BG levels & preparing the needles. I'm so glad it's not my son who has it, he's a proper big girls blouse and couldn't cope with it as well as she does! :mrgreen:
 
Deb Arkle said:
She's wanting to get involved in her treatment already, keeping her own diary of BG levels & preparing the needles.
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Atta girl! sounds like she'll get the hang of it before you do Mum, :P seriously though, carb counting and ratio's can take a few weeks/months to iron out, different times of day etc, etc and couple that with her growing and still producing the odd blob of insulin, it could take a while to get her dosage where you need it to be. But you will! I would encourage her to get involved as much as possible with the needles etc as the sooner she can control the injection herself, the sooner she will learn that it doesn't have to hurt, not even a tiny bit! 8) all the best :)
 
Yes, she's pretty cool with it all - and she's so meticulous about everything, I'm sure she'll be able to keep herself well in control once she's doing it herself. She's taking to it like a duck to water, which makes it easier for us! :)
 
Deb Arkle said:
Yes, she's pretty cool with it all - and she's so meticulous about everything, I'm sure she'll be able to keep herself well in control once she's doing it herself. She's taking to it like a duck to water, which makes it easier for us! :)
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This really will make it so much easier. My daughter was also diagnosed aged 6. She is now a healthy ten year old. We had a rough time for the first few months - until she took over all her insulin injections as well as blood monitoring. We felt that our world had been turned upside down. Then - the breakthrough. We went on our annual family holiday. She did all the things she used to do. She even went on a 2 hour speed boat sea trip. That's when we realised that diabetes didn't need to rule our lives. We are not complacent - we have had some dodgy moments (like unexpected hypos and hypers that didn't want to come down) - but the treatment is just a part of her otherwise normal life.
It will become second nature. Best of luck to you and your family. :)
 
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