So sorry to hear they are on this path now
My DH was diagnosed Type1 Diabetic when he was 13. The JDRF have a children's and parent's magazine, i think it's called Countdown? They have loads of helpful info! My DH has an insulin pump instead of having to give himself needles or timing meals and watching sugar intake. It has made SUCH a difference to his quality of life! It's basically the size of a pager that he clips onto the waist of his pants, and after testing himself, he just adjust the amount of insulin that is pumping into him. He can eat whatever he wants, drink whatever he wants, at any time of the day so long as he keeps the on top of how much insulin is needed. If your sister's DD has the option to get a pump, go for it!
I have type 1 Diabetes..diagnosed at ten years old 31+ years ago...if you have any questions fire away. Yes it is a hard road, and both your niece and sister will need a lot of support in the years to come. My advice to you as a sister and aunty is to educate yourself...there is nothing worse as a type 1 diabetic than undereducated friends and rellies confusing us with type 2s and spouting off misinformed "advice" and "cures". There is a great Australian support forum for parents of type 1 children called "munted pancreas". If your sister is into this type of thing munted pancreas is a goldmine of support. It is run by the same people who run 'reality check' the adult group of which I am a member.
the good news is that with todays treatment options she will be able to have a fairly normal life and the risks of complications, although still there are a lot less than they were a few years ago.
Also a good source for information and great recipes for family is the bimonthly magazine Diabetic Living...the christmas one has just come up and has some great food ideas for christmas day that are D friendly if that helps.
Def get in touch with as many diabetes organisations as you can.
A friend at work has just had her son diagnosed with Type 1 Diabetes as well. She has been told by the RCH in Melb that newly diagnosed diabetics can't have an insulin pump for 12 months. I understand this is to help work out their particular case, patterns etc.
to your sister and her family. It can be a difficult time, but there are some very good supports out there.
That sounds about right re the insulin pump MG......diabetes is a very complex condition to manage and you really need to have experience in all that entails and understand things like insulin:carb ratios, basal patterns, carb counting and correction factors ets before you get a pump....without that sort of knowledge it could be a very dangerous device.
Also because she is a juvenile she may be able to access govt funding for a pump...she might want to check this out in the future.
oh and see if there are any trials going on she qualifies for. My friend's DS qualifies for one that RCH is doing which means a few different treatment options he wouldn't otherwise be able to access.
And tell her not to be afraid to ask questions. To write a list to take to the Dr and keep asking until she understands the answer.
yes, DH didn't get his pump til he was about 17 i think, and had to go to a few in-hospital teaching sessions and monitored over a couple nights to make sure it managed properly
Thank you everyone for your replies, your info and insights are much appreciated. I especially appreciate the references to useful websites and publications. Helps me to be an informed (and not infuriating) aunty/sister. Actually I already have some insights from a time when I was helping to care for a diabetic friend during a severe diabetes-related illness. Although that was a pretty extreme example of someone who really rebelled against her diagnosis and thrashed her body in all sorts of ways and paid very heavily for it in her late twenties.
I think you're right about it being too early for my niece to get a pump. Apparently because there are still some pancreatic cell thingies doing what they are supposed to (it was caught quite early) that can make the BSLs etc especially unstable for the first year or two. Once that normalises a bit then they can look at pumps etc.
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