Looking for Trouble?

Today I received a flyer announcing a screening for families of those with Type 1 diabetes. It takes place at Joseph's diabetes camp site on the day we arrive.

This Sunday.


After a couple of phone calls, I've confirmed that test results will not be shared with insurance companies. And, participants who test positive will be given the option to take part in diabetes prevention studies involving the use of immunosuppressants.

Ryan and I are thinking about doing the screening-- after all, anything that might help lend a better understanding of this disease is definitely worthwhile.

But what about Evan?


Here's where it gets hard.

You see, if they find out she's not making antibodies to her beta cells -- though a huge relief -- this doesn't mean she won't make antibodies in the future.

That possibility still exists.

And if she tests positive -- though she'll be at greater risk of developing the disease -- there is no guarantee that she'll actually become diabetic.

So, what happens if she tests positive?

I will lose it. Period.

Even if she never develops the disease, I'll always be petrified that she will.

Always waiting for that shoe to drop.

Now, would a positive result make us any more sensitive to the symptoms of diabetes than we are right now?

I can't imagine.

Would I want my toddler to participate in a prevention study that required her to take the same immunosuppressants given to transplant patients?

No. Absolutely not.

So is there a compelling reason for us to have Evan screened?

Any thoughts?

(Oh, and is it just me and my "fear filter," or does the TrialNet Wizard look as though he's wielding a sickle?)

The Rebound

No, not Joseph's blood sugar-- just my attitude.

Last week was tough. Increasing one's humility quotient always is. But it's inevitable, I guess.

The nature of this disease.

Anyhow-- first off, I need to thank everyone who commented on my previous post. Your words of support -- along with your willingness to help -- meant a great deal.

More than I can express here.

Now, you people also raised many excellent points, and I was going to respond to everyone's comments in a comment. But I'm afraid that comment was becoming post-size.

Thus, this post.

{Deep breath}

Many of you gave voice to what my gut was telling me as I sat silent in that exam room.

This was huge.

For example, a number of you took issue with the whole "basal insulin needs to be at least 50% of the total daily dose (TDD)" concept.

I'm right there with you.

You see, we've done basal tests before and found that Joseph's basal insulin could keep him steady (even when making up only 30% of his TDD). Unless of course, he was very active. In which case he would need even less basal insulin.

We've never subscribed to the idea that one formula fits all. What works (or at least, used to work) for Joseph may be out of the question for many others.

But we're not trying to create something that works for all diabetics here.

Just our son.

Now, of course insulin needs change. And because they do, more basal testing is needed.

Especially since his doc raised his afternoon basals by 33%.

That's right-- 33%.

Typically, I would have taken issue with such a dramatic change in Joseph's regimen. I would have asked her to take another look at our Smart Charts -- this time, with me (as I've done at all previous appointments), showing her why this move might not be wise.

I would have pointed out other factors that might have contributed to the rising A1c (i.e., excessive highs on our recent road trip, and time disconnected from his pump during baseball games-- games in which Joseph's adrenaline was surely through the roof).

But typically, Joseph's A1c didn't move so dramatically upward.

In that moment, I felt as though I'd failed-- as if I had no right to suggest an alternative.

Well, that moment is done.

The last time Joseph's clinic set his basals, insulin-to-carb ratios, and insulin sensitivity factor was a year and a half ago-- at his pump start. Since that time, we've drawn on information from books like Smart Pumping, Pumping Insulin and Think Like a Pancreas, and tested a ton-- 12-14 (sometimes more) times per day.

But mostly, we've learned from our son.

We've seen how he responds to insulin at night (i.e., he's very sensitive-- during the day, one unit will usually bring his bg down 175 points, but at night that's way too much insulin); how his blood sugars go haywire with pizza or pasta 5-6 hours after he eats; how just 30 minutes playing catch in the backyard can bring down his bgs 100 points or more.

Unless, of course, he's just had ice cream.

You get the picture.

Further, a number of you suggested that Joseph's increased A1c could be connected to the fact that he's growing -- thus we're "aiming at a moving target"-- and that he is on the verge of puberty.

Agreed.

In fact, from where I sit it looks as though this boy is not simply on the verge of puberty-- I'd say he's in the thick of it.

{Heaven help us}

So what am I saying here?

Well, I'm still feeling overwhelmed. Still coming to grips with the fact that Joseph's bgs have been drifting upward and that we may not be able to gain significantly better control until he's through puberty-- (though, that doesn't mean we won't try).

Still damn scared of what all these highs might mean for Joseph down the road.

And still just trying to figure out the numbers-- knowing that what we figure out will be lousy with caveats.

But unlike last week, I feel like our best just might be good enough.

And really, it has to be.

Moving in the Wrong Direction

When Joseph's endocrinologist enters the exam room wearing a serious expression, I know I'm about to face the reality behind a growing fear.

It was all those damn highs, of course-- no matter how hard we tried, we just couldn't seem to get on top of them.

"Hello-- well, Joseph's A1c has gone up," she says as she holds out a white sheet of paper with a number handwritten at the top.

8.2

"Now, we're going to make some basal changes. Joseph's been getting far less basal insulin than he needs-- he should be getting at least 50% of his total daily dose as basal, and that hasn't been the case."

I want to say that it's been this way because when we've raised his rates before, he's gone low.

But I say nothing.

"While Joseph still takes in far less insulin than is typical for a child of his age, height and weight-- normally that would be between 35 and 45 units per day, and um... looks like he's taking in about 17 -- we really want to get him to where he should be with his basals. I think that will help smooth out some of these highs."

I nod in silent agreement, but my mind is still grappling with that number and what it implies.

He was 7.5 at the last visit.

"Sandra, I'd like to increase his rates at noon, 2 and 6 PM."

I stare down at the sheet of paper listing Joseph's new basals.

My God, she's got him at .300 from noon to 2pm. And .225 at 2pm? That's so high... and he's always so active then.

But again, I say nothing.

"I want you to try these rates for the next few weeks, and then we may want to increase them some more until we get that basal up to at least 50% of his total daily dose."

A few weeks? But he's going to camp at the end of the month.

Feeling utterly helpless, I suddenly remember something vital.

"Doctor Connor, how was Joseph's growth?"

"Oh, it was terrific, let's see," she says as she pulls out the percentile chart. "He gained over a pound since the last visit, putting him in the 50th percentile for weight-- which has always been his curve. And he grew over an inch-- which is wonderful. So he's right between the 50th and 75th percentile in height. Oh, and he's got a lot of lean muscle mass-- just what we like to see."

Relieved that Joseph's growth is on track, but still shaken by the rise in his A1c, I ask questions about the Dexcom CGMS and Exubera (the new inhalable insulin). By the time we begin discussing my concerns about diabetes camp, I begin feeling that I can still do this.

That I really can take of my son.

And so we leave our appointment and implement Joseph's new rates starting at noon. At 2:30 PM, his blood sugar drops to 65, we treat, and fifteen minutes later, he's 62.

The rebound later peaks at 344.

On Tuesday, his afternoon blood sugars are definitely more in range-- in fact, four hours after his breakfast bolus, he's 78.

But it's raining, and he's not being active today. At all.

And still he has a low at 8:30 PM.

His numbers are good again early on Wednesday, but only after I decrease his insulin to carb ratio, and have him eat some extra carbs during the day. But then, he goes low at 6:40, 9:30, and 10:40 PM. The latter bg was 57 -- prompting a rebound in the mid 300s for several hours.

And now, I'm feeling so unsteady here. Like I'm no longer capable of really knowing how to respond to all of these numbers.

You see, I was afraid that his A1c would rise, and it did.

But I really thought we were doing all right.

Now I just don't know anymore.

Inspired

"Mama come here," Evan calls from the top of the stairs.

"What is it honey?"

She tilts her head to one side and smiles.

"Just come here, Mama."

When I reach the bottom of the stairs, she pats a bulge in the front of her dress, still smiling.

"Honey, do you have something under your dress?"

She then lifts her purple sun dress to reveal something black about the size of a cell phone sticking out of the top of her Care Bear underpants.

"Evan, wha- what is that?"

Slowly she pulls out an old cell phone case-- one that Joseph had tried to use to hold his pump.


"Mama, it's my insulin pump. I'm doing a story and this is my insulin pump. I'm a superhero -- and I have diabetes."

"Oh."

"Do you know what my name is?"

"Nooooo."

"I'm Danielle and I have a boo-boo ring."


Then she pauses a moment, looking very serious.

"And Mama, I'm a fighter."

One of Those Moments

Joseph has been dying to pitch for his little league team, throwing with Ryan almost every day since the season started.

And the boy is good.

But he'd only stood on the mound in three of thirteen games, and he was rocked in all three-- walking many batters and coming away with his confidence shaken.

Now there are only six innings in each game. And while kids are allowed to pitch a maximum of two innings per game, Joseph has never pitched more than one inning in a game. The head coach has three kids he's gone to all season: two boys who are really good and love to pitch, and his son-- a boy who clearly doesn't want to be there.

As of last Thursday, the team's record was 3 and 11-- the bottom of their league. And the kids were frustrated.

We had just four games left in the season (before tournament time). Because the head coach is on vacation, Ryan was given the task of coaching all of those remaining games.

One by-product of Ryan's temporary position is that Joseph would finally get a real shot on the mound-- not because he's our son, but because Joseph really wants to try, and because he really believes the boy can do it.

And quite frankly, he needs a third pitcher.

So how'd my boys do?

Well, we lost the first game: 9-8 -- against a team that is tied for first place.

Joseph was the closer, facing the meat of the order and striking out four batters in two innings, but letting go three walks and one run in the bottom of the 6th-- on a hit that was just fair that won the game for the other team.

But still his teammates were thrilled. It was close, and they all played well.

Okay, I need to stop a moment here, and share my astonishment at the fact that my son so desperately wants to do this. I understand the whole desire to play baseball-- but wanting to put himself out there, take on so much responsibility (as if he doesn't have enough).

It just boggles my mind.

Fast-forward to Sunday afternoon. The kids faced yet another strong team with a winning record.

But they were ready, making terrific plays in the field, and hitting the ball well-- resulting in a 4-4 tie going into the top of the fifth inning.

When Joseph -- the left-hander -- took the mound.



He threw three balls outside the strike zone, and was poised to walk the first batter he faced.



But then, as I held my breath and watched in amazement, my son stayed composed and threw three beautiful pitches -- striking out that first batter.

The second batter hit the ball sharply to right field for a single.

The third batter -- the top of the order -- stepped up.

Joseph struck him out in four pitches.



Finally, the fourth batter grounded out to the second baseman.

Joseph had hit the strike zone with every pitch.

In the bottom of the fifth we scored a run to take a one-run lead, bringing us to the top of the 6th inning.

Again, throwing nothing but strikes, Joseph got the first batter to hit a ground ball to the short stop (1 out!).

Next was a fly ball that was caught in center field. (2 out!).

And then the third batter hit a single.

The next kid hit a seeing-eye bounder that got by the short stop, second baseman and the center fielder.

They scored the tying run and now had the go-ahead run on third.

This prompted a conference on the mound. Joseph said he was ready to go, but his teammates wanted to first tell him that they were behind him.

That if he got the batter to hit that ball, they would be on it.



The next batter stepped to the plate, hit a ground ball to second base, and was promptly thrown out-- ending the inning.

The kids knew they had a tie in their back pocket (they can only play six innings in this league), but man they wanted that win.

Our lead-off batter, Stephen, legged a single into a double and was now in scoring position.

Joseph stepped to the plate and grounded out-- sacrificing Stephen to third base.

The next kid struck out.

But the last batter-- a sweet kid who is not a big hitter -- with one ball and two strikes, hit a slow rolling single that drove in the winning run.



The team (and their families) went nuts-- you'd have thought it was the last game of the World Series.

Postscript:

On the diabetes front, Joseph's "trainer" (that would be me) worked with the closer to bring down a blood sugar that was 377 at game time (clearly adrenaline was the culprit).

As he stepped on the rubber an hour later, his bg was 261 and falling.

Two hours post game, Joseph was 99 and still on cloud nine.