50 Years?

Today on facebook, Joslin shared a list of all of their recent research finds. These are obviously meant to be positive - possible hopes for a future cure.

This piece, however, struck an unintended nerve:
Study Finds Individuals with Long-Term Type 1 Diabetes Still Capable of Producing Insulin: Surprising Finding Gives Hope to All With Disease
June 8, 2008 – Researchers at the Joslin Diabetes Center in Boston have discovered that a significant portion of people who have had type 1 diabetes for 50 or more years still have the capacity to produce insulin, a finding that has potential implications for improved treatment for all with the disease. To read more, click here: http://www.joslin.org/1083_4367.asp

It is definitely an interesting piece. After diagnosis, you spend a decent amount of time wondering when the "honeymoon" will end. When will the pancreas finally stop producing insulin all together? To be honest, in some ways I was eager for the honeymoon to end, because I thought that things would be more predictable. No more would TJ's pancreas somehow sputter to a start again, kick in a little insulin, and send him low. Or let us down when we were counting on it, if even for a small bit of insulin production.

But this study suggests that even after 50 years of living with diabetes, some people are still capable of producing insulin. The lead doctor goes on to say that this finding could lead to a possible change in treatment, if they find ways for people who have had diabetes for less time to produce insulin...BECAUSE, he says..."it's very rare for someone to live with Type-1 diabetes for 50 years."

Well, then.

I've posted before about my concerns for TJ's long-term health. But I can't say I've been viewing diabetes as a death sentence. TJ was diagnosed at 6. Does that mean that it will be unusual for him to live to 56?? Obviously so much could, and most likely will, happen in science and diabetes treatments over the next 50 years. There is no way to predict what Thomas' diabetes life will be like. I'm sure people who are in their 50's now and using an insulin pump never imagined they would be - especially when they were measuring their BG with urine strips and taking insulin only once a day.

But still, I generally defer all diabetes opinions to Joslin. So far they have proved to be nothing but amazing in their understanding of diabetes and their commitment to a cure. Hearing right from that particular source that it would be "very rare" for Thomas to live longer than 50 years. Too tough to take.

4 AM

After struggling through Saturday evening with keytones, we put Thomas to bed in the 300's, with keytones going down. At 9:30 things looked good, with a number nicely in range. He needed a correction (by injection) again at 11:30, but the keytones were still low. I kept the temp basal up for another hour, just to see if I could keep the keytones at bay for good.

Tom checked at 12:30 - great number -165, but he didn't check the keytones. Why, you ask, did Tom not check the keytones when the whole problem has been keytones, not BG numbers? Yeah, I don't know either.

4 AM...BG is 59 (How! Did it get. So. Low). Keytones are 1.2 (What?!?! His BG is 59). UGH.

So Thomas was treated to a 4 AM gatorade to bring the BG up (97 by 4:30, with keytones down to .5), followed by a 4:30 yogurt drinkable and an injection to cover/bring the keytones down. Assisted by a 2 hour increase in the temporary basal rate. I was treated to a few waking hours from 4 - 6 making sure I didn't kill my kid with insulin. Oh wait, that's not a treat.

7:45 AM - BG 114, Keytones 0.1. Ahhhhhhhh.

Hopefully we can stay more on track today.

If there is an upside here, I suppose it is that the whole keytone situation is easier to manage with the pump. Certainly there is no way to do a temp basal rate without the pump, and with MDI there would be ongoing concern about the IOB from a long-acting insulin. Of course, the 'freedom' of the pump seems to be what is getting us into this keytone trouble in the first place, but that just might be a whole separate post.

Geocaching, traffic and...keytones. Oh My!

It was a definite non-beach-day today, so we decided to embark on an "adventure" with the Earleys and explore some of the caches in the Nickerson State Park in Brewster.

The day started off traffic-y - which shouldn't have been a surprise, I suppose, for Saturday July5th on Cape Cod. Out of character, Tom hadn't objected when I mentioned our plan - but then again, he wasn't coming.

We did make it to Brewster within an hour, and had a great time searching for (and finding) a couple of caches overlooking Cliff Pond. A great spot, and fun finds.

Stupidly, though, I let it go too long without a big meal for TJ. (Supposedly with the pump he can skip meals, but this hasn't been our experience...those "starvation" keytones come on fast.) His numbers were great - staying right around 120 all afternoon, and he did have a snack and bolus at 2:00. But by 4:30 he was complaining, and I could tell he was getting keytones. Sure enough, his BG rang in at 126, but his keytones were climbing - technically OK, but still higher than I would like - 0.4. Mikey helped him with a bolus and a snack while we sat in traffic with a capital TRAFFIC and I found myself understanding my fathers lifelong resistance to Cape Cod.

Suzanne navigated us around a bit of route 28, and we hit a Sea Food Sams. TJ was still belly-aching (quite literally, I'm sure), so I bolused a little low for his 3 mozzarella sticks and bowl of chowder, not sure of how much he would finish (not to mention totally clueless as to how many carbs are actually in 3 mozzarella sticks and a bowl of chowder).

TJ seemed better, but when we got home (in much less traffic, I might add) he started hanging his head over the pot. UGH.

6:30 PM - BG is 446(!!!) and keytones of 1.4. Injection of 2.5 and temp bolus of 125% for 30 minutes.

7:30 PM - still a wet rag. BG is 460 and keytones of 1.7. Now we're going in the wrong direction.

A call to Joslin let us know we were doing things right, though (something I never mind hearing), and the doctor on call had us bump the temp basal up to 150% for 4 hours.

8:15 - he's down to 334 and keytones of 0.4. Phew! Not out of the water yet, but in the right direction. At least we can put him to bed.

9:30 - 143. Keytones of 0.2. Ahhhhh.....

Are we out of the woods yet? Time will tell. The last time this happened we fought keytones for a couple of days, but 0.2 I'll take.

CAMP-Y

Today marks the end of the kids week at Camp Farley!

Although I had driven by a few times, I had never given the camp a second thought until Sally mentioned that she would be sending her kids, and that the camp employed a full time nurse. (As always, my friends are graciously looking after TJ.)

I was nervous at first, but met with the nurse last week. She was eager to do anything I asked, and I felt confident that even if his numbers were not perfect, TJ would be safe at camp. Deb (our amazing Joslin nurse educator) helped to calm my fears a little, too, by reminding me that any nurse is totally capable of managing his daily care. So...off the kids went.

And...they have loved every campy minute of it. Walking through the Camp Farley grounds is like stepping into some '80's movie about camp. There is an outdoor stage area with bleachers built into the hill called - that's right - Council Grove. At Council Grove they kids have picked up many a traditional "camp" song. Council Grove overlooks the pond where they have swimming lessons and the many cabins for the overnight campers. The kids have produced yards and yards of gimp projects. This camp is so stereotypical, it is hard to believe its real.

Five days of hanging without the kids hasn't been too shabby, either. Taking a break from constant parenting, and from constant diabetes management, to just work in the yard, go out to breakfast, actually tan my back at the beach...I'm already planning for next year, when the kids will undoubtedly be enrolled in another session of camp.