Wash with care

I may have mentioned it before, but diabetes is a tricky disease. You can follow all the rules, but it still has a mind of its own.

Some diabetes management tasks are clearly visible -- spend more than a couple hours with us, and you'll see Mark check his blood, correct a high or low, and count carbs before he boluses. But other tasks -- tasks you and I take for granted -- are much trickier.

Such as bathing. Chances are, you jump in the shower without a second thought. Not so for Mark.

The first time bathing became an issue was when Mark got his insulin pump. Suddenly he had this extremely expensive device that was waterproof, but not heat-proof. He can wear the pump in pools, but hot water cooks the insulin, making it a bad idea in the bath.

Then there were the sites. The pump is connected to Mark through a tiny cannula (plastic tube) stuck into his skin with a needle. It has an adhesive that keeps the site on Mark, and if we're lucky, it sticks for about three days.

Except when you submerge it in water. Then it peels off, and Mark gets another opportunity to shoot a needle into his body. As you can imagine, he declines this opportunity every chance he gets.

The temporary solution to losing sites was to eliminate baths. Instead of a nightly bath, Mark took a bath every three days -- that way, if the site fell off, it was time to change it anyway.

I mention this was a temporary solution because any of you who have or know little boys also know that a bath every three days is...well, not optimal. Turns out these little critters are excellent at attracting dirt, and the..."aromatic"...smells that accompany dirt infused with little boy sweat.

So I embarked on a mission to keep Mark's sites on in water. I tried numerous clear adhesive products with wonderful names like IV3000 or Tegaderm, which didn't work. I cemented the tapes using a liquid adhesive called Skin-Tac, and that worked better, but Mark still lost sites with alarming regularity. (Oh, and did I mention the sites run about $40 a pop to replace?)

And so I went to the boards...the www.childrenwithdiabetes.com boards. Where the parents suggested another product, called OpSite Flex-Fit tape. It worked like a charm! Suddenly, Mark's sites stayed on. He showered one, then two, then THREE days in a row, and we didn't lose the site! He got out, I gave him the insulin he missed while disconnected from the pump, and life was good.

It was a miracle, and I celebrated it as such. Until...I tried removing the tape. Which refused to come off. And sent Mark into a screaming fit as I doused it in Uni-Solve three times, and then finally ripped it with all my might. Mark was in tears, but the site finally came off. I couldn't believe it -- first I couldn't get the sites to stay on, now I couldn't get them OFF!

I went back to the boards, and this time the parents recommended a product called Medi-Sol. That did the trick -- Mark's sites peeled off easily, and we were back in business. He started a new nightly bath regimen, and was thrilled. (He really likes baths!)

Except...now the daily bath has sent his little body into a series of low blood sugars. Apparently, hot water opens up your arteries, which causes the insulin to rush through and burn out much faster than it's usual 2-hour time frame. Which means I can't give him the insulin he missed while in the bath (it sends him even lower), and around 11 p.m., he shoots waaaaay up to the 300s.

So nw we're on a new schedule. I give Mark his insulin as soon as he gets home, around 6 p.m. We eat, wait 90 minutes, then I give him a small, uncovered snack (to keep him from going low), and put him in the shower. When he gets out, I give him the missing insulin, cover the snack, and cross my fingers. So far, my success rate is hovering near 50%.

I'm certainly not complaining, and I'm not whining about how hard diabetes is. It's just fascinating to me how much work and thought diabetes requires for things as simple as bath time, and how dire the consequences can be for Mark if I judge incorrectly, or bathe him too soon after dinner.

To you and I, it's just a shower. To Mark, it's a whole science experiment, and another chance to outwit diabetes. Unfortunately, as is often the case, diabetes is a formidable opponent.

What they don't print on the label

My first year with Mark was a one of intense learning. I soaked up every bit of diabetes knowledge I could, grilling doctors and nurses for info, reading books, attending conferences, and scouring the Web. I became pretty adept at recognizing symptoms of high/low blood sugars, counting carbs, and managing diabetes.

However...there are certain side affects of diabetes the doctors, books and conferences do not tell you about. I had to learn about these the hard way -- from experience. These side affects include:

* Vampirism. Yes, as in vampire. Which is what my young son has become. Can't tell you how many times I've caught him sucking the blood off his finger after a test.

* Psychosis. Sure, the doctors said if Mark's blood sugar is high, he may become "irritable" or "cranky." But nobody told me the honest truth, which is that when Mark's high, he turns into the devil! Seriously. I'm not exaggerating, we're talking head-spinning, venom-spewing psychotic episodes here.

* Insomnia. Or rather, a highly tuned sense of delaying bedtime by uttering three simple words: "I feel low." (I'm not talking about the times he really is low; rather, the times he pushes back bedtime by almost 30 minutes by engaging in a slowed-down version of the testing process.)

* Manipulation. Mark knows better than to ask me for candy. Instead, he peruses the candy aisle very carefully, and casually says, "Hmmm, this would be good for treating a low..." And cut to Mom buying said candy.

* Short-term memory loss. As in, Mark completely forgets how to count carbs for vegetables, but dangle a cookie in front of him, and he's amazingly accurate.

* Creativity. At mealtimes, Mark frequently gives himself insulin, only to announce moments later that he's full. He then names the foods he's willing to consume to make up for those missing carbs. Interestingly enough, those options usually include soda, glucose tabs, or an extra helping of dessert. Equally interesting is how hungry he becomes for his meal again when I announce the only replacement food is milk, and lots of it.

* False highs. These are most common at, but certainly not restricted to, nighttime. It occurs commonly after Mark tests, registers high, and answers negatively to the question, "Did you wash your hands?" (For some reason, the meter reads dirt as sugar, and registers high.) But dirt's not the only culprit -- Mark's had highs due to excessive scented lotion, sugar, petting the cat, wiping his hands on the table, or washing his hands with wipes, but not letting them dry. All of these are quickly followed by loud sighing, stomping, banging around as he rewashes his hands, and then re-testing.

But of course, the side affects are not limited solely to Mark. Unfortunately, they've affected me too. My symptoms include:

* Needle misperception. I've become so accustomed to needles, that I don't think twice about carrying them in plain sight. Which makes for some pretty awkward moments; once I said good morning to a family in a hotel hallway, and watched them quickly dash away. It was only then I realized I was holding a loaded needle, and they didn't know it was filled with insulin, not illegal drugs.

* Inability to watch my language. I wish I could say that I've only asked Mark, "Are you high?" in public once, but I'd be lying. It's a fairly common question, as is the threat, "Why are you acting like this? You'd better be high!" (The only acceptable excuse for bad behavior.) I forget that other people don't get the context (high blood sugar, not high on drugs), which also makes for some funny stories.

Like I said, I've never seen any of these symptoms or side affects in the diabetes literature. I think I'll write a book -- What You REALLY Need to Know after You've Learned Everything You Need to Know About Diabetes.

I think it would be a big hit. At least with the www.childrenwithdiabetes.com folks.