In February my 19mo DD and my then 8yo DS were diagnosed with type 1 diabetes (at the same time ). We had to spend a week in the hospital while my DD was stabilised (very up and down) but have been going well now at home. Both DD and DS have to have 4 injections each per day (not including corrections).
Does anyone else have children with this disease and how are they coping with it??
I don't have kids with diabetes but am a Type 1 diabetic myself. There is some great info for parents of T1D kids over at Munted Pancreas (google it).
Very supportive especially for parents of newly diagnosed kids.
Best of luck :-)
Last edited by MistyFying; June 6th, 2010 at 01:42 PM.
: link removed as per forum guidelines
Another type 1 here.......second the munted pancreas site and also its parent forum reality check...both top notch sites for info and support......any questions fire away......have you thought about pumping for your little ones.I am on a pump myself and have heard it can invaluable for children and now has a govt subsidy for kids too....
Thanks guys, we have been on the JDRF and the DA websites so will check out the other one tonight.
Melanie we have been told to get a pump for bubs but they are up to $8000 and even with the subsidy we still have to come up with $5000 (means tested) so it means that we have to wait until we can save up for it.
We have a top notch diabetic team that we are working with at John Hunter Childrens Hospital in Newcastle and couldn't be happier with the treatment received so far. We have another clinic in August that we have to go to so will see how the kids have done at their 3 month blood test :? At the last one the Dr told me that by the time Meara is 21 she shouldn't have it any more. They think they are that close to having a cure (fingers crossed).
Mel - how are you going on the pump?? Is it a problem to keep having to move the canula every couple of days?? And how is it to sleep with?? Sorry for all the questions but the doctors can't actually answer those ones lol as they don't have to use one. I'm worried the bubs will try to pull hers out or it comes out when she is sleeping.
Have you been told that even if you have the most basic level of private hospital cover the pump is free? It might be worth looking into as in the long run with all the added medical extras that type 1 is going to throw at over the years to come PHI might be worth thinking about...just a thought. if you had basic cover for the twelve month waiting period it still works out thousands cheaper than forking out of pocket for one.....
As for pumping, i love mine.....you will have to pry it out of my dead cold hands. I have a freedom of lifestyle that I was never able to achieve on injections. I have had type 1 for over 30 years so have seen a lot of changes in treatment over time and the pump is just the bees knees...fewer hypos and when I do get hypos they are much milder and easier to manage. It is no problem to move the cannual every few days...think of it as one injection every few days as opposed to several a day...sleeping is not a problem i just let it roam free in the bed nowadays but to star with I had litte pump bags that i wore to keep it in. You can check out a whole range of that type of accessory at a site called pumpwearinc....created by a lady whose daughter is type 1 and a pumper. there are clothes and underwear with pockets to stash the pump as well and little pouches to clip on belts etc.... nowadays I dont even notice i have it on and have sometimes had a shower gotten dressed and gone out without realising i havent reconnected it is such an unseen thing. pumping is not for evryone but it cant be a godsend for children especially ones like your 8 year old as it can give some sense of independence and control over the situation back again where kids can lose that...
oh with the cure thing....i don't mean to burst your bubble but i was told that there would be a cure within the next five years when i was diagnosed 30 years ago......It is kind of a running joke in the type 1 world that one...I do believe they are closer than they have ever been but i will believe it when I see it...... LOL
thanks mel and bluesky. I have been told we should have PHI but I couldn't remember what sort they told me lol mind you I was having so many drs and specialists coming in and talking to me over that week that I'm not surprised I've forgotten some things I'll have to look into it but from what I've looked into it is still quite expensive.
Mel - glad the pump doesn't get in the way of you doing things. My 9yo has said that he doesn't want one as he prefers the needles. The specialist has said that is fine but should still have one for bubs I tried using a canula anyway so that she only had to have the injections in the one spot but she freaked out and kept trying to pull it out even though it was near her bum. I think it kept rubbing on her nappy.
Will try again with the canula and see how she goes.
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BellyBelly Member
Type 1 Diabetes
). We had to spend a week in the hospital while my DD was stabilised (very up and down) but have been going well now at home. Both DD and DS have to have 4 injections each per day (not including corrections).
I'll have to look into it but from what I've looked into it is still quite expensive.
I tried using a canula anyway so that she only had to have the injections in the one spot but she freaked out and kept trying to pull it out even though it was near her bum. I think it kept rubbing on her nappy.
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