Monday, August 07, 2006

Letter From a Friend with Type 1

my sister's friend sent us this letter when L was first diagnosed. It is great advice from someone who lives with type 1

The pump is GREAT. It automatically shoots insulin every 2 -3 minutes, all day. Then when you eat, you "bolus", which means you push a button and it shoots in more. You only have to deal with a needle every other day. It's like an IV, sort of. You stick the needle in your stomach, pull the needle out, and you are left with a little tube in your stomach with a plastic part that you stick to yourself.

Then the insulin pump has a "plug" on the end of the tube that you can snap into the part on your stomach. It makes life very flexible, and it is easy to use when you participate in any non-contact sport. Most people don't wear it if they are playing football or doing karate, but other than that, you can wear it for ballet and everything. I highly recommend it.

I also highly recommend making sure L knows everything that the adults know. It's so important that she understand that SHE is in control of this, not her parents. She has to be the one to know how to test her blood sugar, give her shots, etc. I know it seems like a lot for a 7 year old to take on, but it really isn't. If she understands that this is *hers*, she'll be MUCH better off in the future.

The kids I know whose parents did everything for them grew up to be very bad, irresponsible Diabetics. The kids who were involved with their own treatment were good. If she views this as something the grown ups take care of, that is a bad thing. I know that since it's new and she is young, her parents have to help - BUT - getting her involved in every aspect as soon as possible is vital.

You can also make it fun, like buying her a fun watch with an alarm to remind her when to test her blood sugar, or decorating her glucometer in a fun way, etc. As soon as possible, her parents should stop doing tests for her (if they haven't already) and let her do it on her own. The same with shots. One way to make it less intimidating is to let L give the grown ups shots - obviously, don't fill the syringe with anything, but just let her practice stabbing you guys with the syringe. I promise it doesn't hurt ;-)

Another thing is, if she isn't filling her own syringes yet, have her check to
make sure her parents did it right - and occassionally do it wrong to see if she can catch it. Have her recognize how much she needs to take, if there are bubbles, etc. The last thing is, as she gets more and more "in charge" of things, have her parents keep guiding her and making sure she's on ther right track, but make sure she knows she's the expert and she's the one in charge. She should WANT to know what her blood sugar is, it shouldn't be a chore or something she does unwillingly. She should want to make sure it's good, etc. I know she seems too young to be learning all this, but she really isn't.

And another thing to emphasize is that if she can take control and learn everything, *she* can be the one to control how she cheats. There's no reason she can't have cake at a friend's birthday party, she just has to know how to calculate how much extra insulin to take. Obviously, work with her doctor on those calculations first, but usually what will happen is there will be a scale.

Mine is this: 15 grams of carbs = 3 units of insulin. So I can essentially eat anything, even when I was on shots, as long as I could figure out how many carbs it was, and then take insulin accordingly. With shots, it means extra shots, but that's ok. I can eat a lunch that contains 45 grams of carbs and I would take 9 units of insulin, or I can eat a candy bar that contains 35 grams of carbs and take 7 units of insulin. It all works out the same, it's just about carbs. But again, make sure her doctor is the one figuring this stuff out, because her scale will be completely different from mine. I'm just showing that it's possible.

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