Friday, November 20, 2009

Star Power

I'm still in the midst of a several-weeks-long cold bout; actually, back-to-back colds. I've gotten used to the constant coughing, to the point where I'm surprised when I get funny looks from people, until I remember everyone is afraid of H1N1, and anyone who's coughing seems suspect to them. Oh, well. I'm checking my own temp periodically, so I know it's just a cold. I tell this to the people I like.

I just wanted to make a note of my new hero: Ray Allen, of the Boston Celtics. I heard him yesterday on the radio, talking about his kid who was diagnosed with type 1 diabetes last year, at the tender age of 31 months. He said he just had to speak out and try to spread the word about what diabetes is, because he knows most people don't pay much attention to it. He pointed out that the symptoms of type 1 diabetes can mimic the flu - so it could go undiagnosed especially during this season of so many flus - and that kids, even today, do die from diabetes because it isn't diagnosed in time. I just wanted to shout out my car window, "He's right! Listen to him!"

I thought about when I developed diabetes, what it felt like. First it was a couple of months of unusual thirst and weight loss, which at first I didn't mind, being a pre-teen. We travelled to the South, and I thought my extreme thirst was because of the heat, and all the bathroom trips because of my thirst. But then it was exactly like the flu - that's what we thought it was, my family and I, even though it was the middle of the summer. It was just so exactly like the flu: throwing up, loss of appetite, aches. Somehow, I ended up drinking a lot of sweet drinks, like Cool Aide (though I don't recall my mom ever serving that any other time). It was the only think that tasted right, even though, of course, it was the worst thing I could consume at that point, unbeknownst to me. The thirst at that point just seemed like a result of dehydration due to the throwing up. It wasn't until I had trouble breathing that I went to the doctor - who, fortunately, took one look at me and tested my blood sugar. It was around 700; the doctor said I was close to diabetic coma. And I was one of the lucky ones. My mother has always felt guilty about this - but I always think, how could she possibly have known? No one in my family has type 1 diabetes - not even in the very extended family.

I read recently about a child who died because she had flulike symptoms, and her mom called the doctors office, and was told to call back if the child didn't get better in a couple of days. It turned out to be - duh - diabetes.

I wouldn't want to panic mothers who are already freaked out whenever their kids get sick - like I do - but I would want to tell people, if your kid seems to have the flu, pay attention if he or she is also really, really thirsty and/or peeing a lot. I recall being sick at other times, and my mom had to force me to take fluids; but with diabetes, I was begging for it. Also pay attention if your kid is not fluish but peeing a lot or really thirsty, or losing weight for no obvious reason, because that's the earlier stage (I lost 10 pounds in two months, then another 10 pounds in about two weeks, during the "flu" part). And if your doctor (or your doctor's office personnel) tells you not to worry, mention diabetes by name, and follow your instincts.

I guess just knowing about diabetes is the main problem; most people think of type 2 diabetes, which has such different symptoms (and treatments) from type 1 that I often bemoan they are called the same name. But I can preach all I want - I doubt anyone who doesn't already know a little about diabetes is reading this. So it comes back to praising Ray Allen - because ordinary people who've never paid much attention to diabetes will actually listen to him.

By the way, if you'd like to comment on this or any other post, click on the word "Comment" right below the post. This blogspot site has a lot going for it, but that part of the layout ain't one of them. I'd love to hear from you. What do you think of stars like Ray Allen who pitch for us "little" folks (little as in not famous; not little as in having "juvenile" diabetes)? Did you have problems getting your diabetes or your kid's diabetes diagnosed? What would you tell people about it if you had the chance?

Tuesday, November 10, 2009

H1N1 vaccine experience: Out of the fire, into the frying pan

Relief and exhaustion. We finally got H the H1N1 shot - or at least, the first round. She'll need another one in a month, if she can get it. But at least she has some protection.

It only took waiting in line for more than 2 hours during dinnertime with our two-year-old and probably a thousand other kids and their parents, in a local school. And we were the lucky ones, who got there 45 minutes before the town's clinic started. We were inside the school when the clinic began, whereas most of the line snaked outside and around the school building. Then, they had the brilliant (note the sarcasm) idea of letting people who said they wanted only the nasal spray go into a separate, much shorter line; but when we got to the front, those folks were allowed to choose whether they go the spray or the shot. We waited in the original line - our daughter had a cold, and we just weren't sure enough of the vaccine would go in, never mind if she wiggled. We ended up being one of the last people to get the shot, though they did still have some nasal spray at that point. I just wouldn't want to have been one of the folks waiting in line for the shot because they couldn't get the spray (because they're high risk), only to be turned away.

I hated having to make the decision on the fly between spray and vaccine, not only because of what I noted above, but because the vaccine contained mercury. I was finally convinced by the attendant - they had a lot of these folks available, and they did seem knowledgeable. She said the shot contained only the amount of mercury that's in one tuna fish sandwich. I guess that's a sorry comment on the state of our food sources, but in fact it convinced me to go with the shot. I didn't like not being able to discuss it with a doctor or check the statement with another good source - I'm doing that right now!

Here's one site I found: . Granted, it's from Washington state. But it notes that the level of thimerosol (the mercury-containing preservative in the vaccine) should not exceed 1.0 microgram per 0.5 ml dose of the vaccine. Now, they noted that Washington state has suspended that limit for he current H1N1 vaccine program. But let me check if that's the amount generally found in one tuna fish sandwich...Hmmm. The FDA says regular albacore tuna contains 0.353 parts per million of methylmercury (apparently a more permanent, i.e. harmful, form of mercury than what's in thimerosol). Uh oh. If I'm doing my conversion right, 1 microgram per 0.5 ml is 2 parts per million, far more than 0.353 parts per million. The only comfort is that they type of mercury in thimerosol breaks down much more quickly than the type in tuna - so it's not in the body as long. I'm going to have to double-check with her pediatrician about this.

Well, I'd already decided to try to get the nasal spray for the follow-up vaccine. And I do limit my daughter's fish consumption otherwise, so she's not getting a lot of mercury exposure overall. But I think I'll avoid feeding her tuna for a few weeks.

I'm sure I overthink this sort of thing, but I'm also pretty sure I'm not alone in this habit, especially as a mother/parent. I think I did the right thing. H had a low fever after the shot, and developed one again at daycare today. But she was otherwise fine, and by the time I picked her up this afternoon, she wasn't hot at all. It was just the vaccine doing its work.

I did happen to meet another mom with type 1 diabetes in the line - right behind us! So that made the wait more interesting for me, if not for my daughter or ever-patient husband. I'll have to share that discussion in my next post, though. I need some rest!

Sunday, November 1, 2009

Viral Vibes

Viruses come in billions of forms. Both my computer and I have been fighting off viruses this week. My husband's computer's power cord is on the fritz, too - so I don't know if this post will ever make it up!

Fortunately, my own personal virus is just a cold. Ah, daycare. At least my daughter is in family care, so there are only 5 other kids for her to exchange slobbery germs with. Still, as any parent knows, those kid germs move faster than anyone else's.

I haven't noticed my blood sugar being much affected by this cold, but stress seems to have been doing a good number on my numbers. Work is stressful these days - but I should be thankful to have work, right? But work could take up all my waking thoughts quite easily (you don't want to hear about that).

So could my daughter's changing moods and thoughts. She's going through what I think is standard for her age: high drama. I wouldn't call it the terrible twos, because much of the time it's positive. All her stuffed animals have come to life in her head, in just the past couple of weeks, it seems. Of course, she likes to have help animating them, and the scenarios tend to be rather repetitive (rather). But she gets the biggest kick out of the little girl mouse popping out the doors of her castle (made for other dolls) and saying "boo!" I mean, she giggles hysterically every time; then she says "do it again!" Yes, when I try to suggest a different game, sometimes a small fit ensues; but she can actually be persuaded most times. Is that common for a 25-month-old?

Yet when trouble comes up, it's Big Trouble: At daycare last week, after a too-short nap, when she saw a little boy (really the sweetest boy) sitting in the chair she often sits in to "read," she screamed and grabbed and tried to pull him out of the chair -- apparently by the neck. I know this sort of thing is common at this age; at least it wasn't hitting or biting). Both I and her daycare provider (Kim) talked to her about not hurting others, and Kim helpfully looked up ways to handle this stage, as she hasn't had any other girls this age before (she was a preschool teacher for a long time). Apparently, having her own special spot can help H head off such emotional collisions. She can go to it when she's had enough of cooperating and sharing. I just feel bad that I can't see the problem first-hand, it would be easier to figure out how to help. But we don't see this at home; she's the queen bee in her nest of toys.

Meanwhile, I'm still trying to get her the H1N1 shot (aren't most of us still?). Actually, I've been hearing that other states are doing clinics, whereas our pediatrician can't seem to get more than a handful of doses each week, and those are either snatched up before I can take a breath in the morning or are earmarked for the "high risk" kids. Because H is one month past her second birthday, she doesn't officially fit that category; but as her pediatrician admitted, viruses don't pay attention to such artificial cut-offs. So here we are. And of course, I am in the high-risk category, but adults can't get any H1N1 vaccine yet, at least in Massachusetts. I just want to get this done so I can stop searching for the vaccine every day, and stop worrying. So add that to the stress list.

But enough about viruses. I am looking forward to getting a continuous glucose monitor that syncs with my insulin pump (it'll tell the pump my blood sugar readings when I go to enter insulin), now that my insurance will cover it (the insertion sets, which must be changed every few days, will be expensive, though). I've had experience with a CGM before - during pregnancy - and I know it'll be incredibly helpful (particularly for that black box that is the night time). I hope it will be better than the previous generation of CGMs. I used a different brand during pregnancy, one that didn't sync with my pump. I don't want to name it because I think that brand has come a long way, too, from what I hear. But it would beep in the middle of the night a lot to signal a low when I wasn't low; though it always beeped when I really was low. I hear that with this new monitor, if you sync it with your finger-stick tests at the right times of day, it's really accurate, so you only have to do maybe two finger sticks each day. My calloused fingers would love that - though I've been thinking of taking advantage of those callouses by taking up Celtic harp playing (no kidding!).

I'm curious what you other moms out there are experiencing with this H1N1 thing. Are you as worried as I am? I'm also curious if any other type 1s have experience with the current-generation CGM from Medtronic.