Friday, September 08, 2006

Books and Gumballs, Dogs and CGMSes, All in a September's Work

Every parent of a child with diabetes knows when the D-year starts. That's September, when school begins. New teacher to train, new classmates to educate about diabetes. New teasing, new difficulties. Hopefully, more than a few triumphs. More than a little newfound independence.

Parents of children with diabetes know what a new school year means. TIME FOR THE EXPLANATIONS AND PRESENTATIONS, REPAIR WORK AND DIFFICULTIES, TRIUMPHS AND HOPE.

Our D-year got off to a bit of a rocky start. Our longtime teacher's aide, who knows our son's diabetes like a nurse's assistant, had a baby and is taking some time off. There's a new school nurse, too. Previously, we had the best school nurse in the universe.

A lot of times, people who do not deal with this disease on a daily basis don't understand that the answer to the question "So, why aren't his blood sugar levels stable yet?" is "Because his pancreas still is broken and his islet cells have all been destroyed."

So far, I have gotten the sense from his teacher that she's not sure why the numbers are fluctuating so much. She is finally getting the idea that we are tweaking the best we can but we are still going to see the number here or there in the 200s, or in the 60s, or even in the 300s or the 50s. And that that doesn't mean we are completely screwing up his insulin dosing.

The 504 meeting went better than expected. (And I recommend that everyone who has a child with diabetes get a 504 plan set in place with school IMMEDIATELY. (Click the link for more info from the ADA.)

Because diabetes is a federally recognized disability, your child is entitled to accommodations for an appropriate public education in the least restrictive environment--and if everything is spelled out, there's less chance of mistreating or not accommodating your child. E-me if you have questions about this, I'm glad to help.)

As it turns out, the new school nurse actually worked with me when I taught at the middle school. This was pre-diabetes of course, but she was at least a friendly face. The aide was one of our son's counselors at his run-around day camp. Since this is our 3rd year with a 504 plan, it was mainly just updating things, anyhow.

We read a storybook to the class about diabetes and answered some GREAT questions from the kids.

This usually offsets a lot of the teasing, pulling at the insulin pump, etc. But this week, a new kid to the school got angry when our son had to eat crackers at his desk before PE. When our son explained he had diabetes, the kid said "I don't give a shit" to him. That had to be straightened out but hopefully it was a learning experience for him.

There was a birthday party, too, that I found out at the last minute (AT THE DOOR OF THE PARTY) was a sleepover. Apparently the parents had let their son address the invitations, but had neglected to proofread what he wrote inside them. I wasn't the only surprised parent!

As all the other boys were jumping up and down saying that they are going to sleepover, I made the snap decision to rush home, type up a list of instructions (the mom has had our son over for playdates before and felt comfortable with the diabetes), pack up all kinds of backup supplies and hand him a cellphone for emergencies. I didn't want him to be left out.

It didn't really work out though. At dinner his number was 220. He bolused a correction and bolused for his dinner and cake, which he counted pretty accurately, I believe.

However, after this he was given very sugary gum and didn't give insulin for it, thinking gum has very little carbs.

True, if you're just having a gumball. But when you consume it by the pound, you had better bolus for it. By the time bedtime (10:00) rolled around he hadn't called since dinner, the kids were wrapped up in a movie, and I had to call him 3 times to get him to test for a bedtime number. Finally at 10:30 I got the number; it was 435. He washed his hands to make sure the high wasn't from sugar residue, tested again and hit 419. (Normal blood sugars are 80-120, his bedtime target is 125.)

He had to give a big dose of insulin. Under normal circumstances, I would test him to make sure he was coming down, then test him at 1:30 AM. I would make a decision on whether to test again at 4:30 AM based on that number.

I couldn't ask the mom to do that. And I wouldn't have slept all night for worrying. So I drove over in my pajama and brought him home. I cried the whole way over in the car. Why can't things just be normal for him? Then I thought, he's only 9. This is so much for him to handle. Of course, this made me cry even harder.

I cheered up in time to pick him up and put him to bed. In the morning we got to start our merry diabetes day all over again. It was hard, but I seemed to care about it more than he did.

I talked to my diabetes support group to get some perspective. It's just not the kind of thing "normal" parents can understand, even though all my friends are always so kind.

After talking to other parents, most of them don't let their kids sleep over at all. They can invite other kids over but not the reverse. It's for the same reason which I encountered.

One mom tells her 14 year old that he may go to the party, but may only sleep over if he is willing to set his alarm, test himself, and show her on his meter the next day that he has done so. Otherwise he has to leave at bedtime.

So far, he hasn't taken her up on the offer, but I think this is a good plan. Also, it helps our kids build the independence they will need in the future. No, it doesn't seem fair and it's not. But as they say, it is what it is.


Our son learned how to put in his own infusion site without numbing cream, saving 30 minutes of time in a site change.

It's a big needle, so it's a pretty brave thing to do with no anesthetic. HUZZAH!

We have passed the initial application phase of getting a diabetes alert dog. These dogs can sense low blood sugars and alert their owners at any time of the day of night. I have even heard of a diabetes alert dog who called 911 for her owner! It just happened a few weeks ago. Now we have a lengthy application to fill out.

And the continuous blood glucose monitor is a reality (just not one we can afford right now, until insurance covers it as the standard of care--which I have confidence they will do).

Diabetes isn't all bad, I remind myself. I would never have met so many great people without this disease coming into my life. They truly are my friends for life.