Type 1 diabetes?

[AnyDream]

Hi, just wondering if anyone has any experience with Type 1 diabetes - either yourself or your children.

My sister is going through the shock of diagnosis right now, her DD is only 7 . I just wish I knew what to say to help make things better.

[~TT40~]

sorry to hear your sister and her dd are going through that. My cousin has it. and I've had alot to do with it through work. These days there are alot of support out there, and there is even a mag soully on diabetes, with new research, lifestyle tips and yummy recipies that are safe to eat. ...only thing is i dont know what it is called..

*hugs*

[Ree*Ree]

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!

[melbel]

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.

[Mother Goose]

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.

MG

[melbel]

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.

[Mother Goose]

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.

[feeb]

I will flag this thread with KimB as she has 2 kids with Diabetes only diagnosed this year.

[Ree*Ree]

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

[AnyDream]

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.

Again, thanks everyone for your replies.

[KimB]

Marydean, I have had 2 kids diagnosed in February this year. My then 15 month old and my then 8 yo. It was very frightening so I understand how your sister feels. The amount of information they throw at you at first is confusing but after a while it becomes second nature. The pumps everyone has told you about are about $8000 per pump however the government has recently given a rebate for them. Unfortunately the rebate is means tested. The hospital will tell your sister (if she isn't already) to join basic hospital cover in a PHI as this will actually cover the cost of the pump (under implantibles) after 12 months cover. Your sister will need to apply to the National Diabetes Services Scheme and this will entitle her to free needles and Centrelink will issue a health care card so the cost of the insulin is cheaper. JDRF is a fantastic place for info and also when you need to get the pump. They are the ones that work out the rebate.

My kids have been on the needles now since we found out and with my toddler we are still having trouble with her levels but my son is usually ok. We still have days when he will go high or low but he is pretty good. If you need any more info then you can pm me.

Big hugs for your niece and sister as I know how hard it is at the start

[AnyDream]

Kim I can only imagine how distressing your year has been. Thank you very much for that info about pumps. That sounds like the sort of advice that gets missed depending on who you're talking to at the hospital, so I will pass that on to my sister. She's still a bit shell shocked (it's only been a little more than a week) but already it sounds like they are both coping a lot better with "the new normal".

[KimB]

Glad to hear that your sister seems to be coping. It is very daunting at first but soon becomes 2nd nature. Your niece will probably get used to it before your sister lol. We have heard that my youngest DD is being offered a pump through a local community group where I live and it seems to be happening at the end of this month We are very happy about that as you can imagine. That will make life so much easier for her and for us as we won't have to give her 4+ needles a day. Hopefully your sister and niece have a great diabetic team as that can make all the difference as well. I have had to make numerous midnight phone calls and have had answers there and then. We are quite famous in the diabetic world as it is very unusual to have 2 siblings diagnosed at the same time lol. Not that that gave us special treatment (bummer lol) I'm sure your sister will be told to watch out for when your niece gets sick as it can affect her sugar levels and also to have her eyes tested. She should also be checked for coeliacs as diabetics are prone to it as well. Sorry if this is a lot of info but I'm remembering about more stuff.

Hope some of this helps. PM me any time with any questions

[AnyDream]

Thanks again Kim. I bet you're really pleased about getting the pump! My sister has already mentioned levels when sick and eye testing so they sound on top of that, but I will mention the coeliacs too. I bet your head is stuffed full of info you'd much rather never needed to know

[KimB]

To true lol. One problem your sister will find is that nearly all the school snacks are high in sugar. I am in talks with my local supermarket to start stocking diabetic food (we are getting a new Coles) and I'm hoping that will help solve some of the problems. Even some of the healthy food (like fruit) is naturally high in sugar and are therefore exchanges. I'm sure your family will get the hang of it in no time.