Thursday, July 13, 2006

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.

20 comments:

Kelsey said...

It seems like the rebounds from lows are when Joseph is having the most highs, huh? Is there a way to keep those rebounds from going so high? Or lasting so long? Hmmm.

Kathleen Weaver said...

There is one factor you need to keep in mind. Since he is growing (a good thing), you're aiming at a moving target.

I have the opposite problem when I am losing weight.

So don't be so hard on yourself!

Scott K. Johnson said...

Ok, first off - no biggie. In the big picture, this is not a terrible situation.

This is just a number. A point of data which can be used as ammunition to better battle the situation. Just like a single blood sugar.

I would be interested to know why it is that the doc thinks it's his basal rates that are causing problems? What data is that based on? Do you agree with that, or do you think there may be other causes for it?

Some back-to-basics basal rate testing can tell you in a matter of a few days whether the doc is off her rocker or not. The doc DOES NOT *ALWAYS* know best. Just usually.

That figure she's talking about - the 50% of the total daily dose coming from basal - that's just one school of thought.

In my personal situation, I eat a lot - so most of my insulin comes from meal boluses. I'm not saying I'm in good control - but just that the figure in question just has more to do with how much is eaten vs. good/bad control. A person could eat a lot, have excellent control, and their figure could be like 30% of their TDD (total daily dose) from basal. I guess I'm just saying I don't personally put a lot of stock in that particular number.

Do you have the book "Pumping Insulin"? I love that book. It walks you through all the testing that needs to be done to nail down those pump settings. Basal rates, insulin to carb ratios, correction factors - all of it.

As Kathleen states - it is a moving target. It will be just a tad harder for you guys than it would be for a relatively stable adult.

Remember, he's may have hundreds of A1C's in his life, and they are not always going to be great. Use them as a tool. Identify where the highs are coming from and address them (I know, easier said than done).

As the technology matures, things like the continuous sensors become available, that task will get easier (identifying highs).

Take a deep breath and make a plan. Plans always make me feel better - like I've got a good idea on a methodical approach to identifying the problem.

Once you identify the problem, the solution is usually pretty easy.

Behavioral issues will me much harder to address than simple pump settings too.

I'm sure that between the two of you that you'll come up with some solid ideas to work on. Joseph is stronger than you might think, get him involved in the process, if he's not already.

You'd be surprised what he comes up with I bet.

All the best.

art-sweet said...

Sandra, I hate to say this, but...

Looking at the pictures you've posted of Joseph lately, and taking in what his doctor said about his growth, I've been struck by the fact that he doesn't look like a little boy anymore. He looks like a kid on the verge of puberty. On the verge of hormone ambushes, on the verge of totally unpredictable blood sugars.

All these people who try to pretend diabetes is this perfectable science... it's not. We just try the best we can. (And I'm with Scott: trust your gut on the basals)

Also, how about asking you feel things are going before ambushing you with the A1C? I'm not liking this doctor, damnit.

Felix Kasza said...

Hi Sandra (and Joseph, in case you read this comment) --

Scott is right. You guys need to start taking charge of setting, verifying, and adapting insulin dosages. Unless Joseph stops growing and lives a life more regimented than that of a Benedictine monk, setting basals by remote control will _not_ work.

Won't you please consider doing your own basal rate tests? (And go on to bolus testing from there?) And experiment with exercise basals?

And one other point: "50% basal insulin". One word: hogwash.

This is utter and complete nonsense, bloody rubbish, and an indication to go find an endo who understands the dynamics of insulin, diet, exercise, growth, and daily/longterm variations.

You know where this "50%" number comes from? In _gereral_, in _adult_ diabetics eating a reasonably _varied_ and _unrestricted_ diet, it turns out that bolus insulin makes up _between_ 40% and 60% of the TDD. All of that must apparently apply to Joseph, making him the perfect avererage specimen, to listen to your endo.

For me, on long-ride days (100 miles and more on the bicycle), I can consume 500+ grams of carbs -- and bolus for 10 of them, if that much. You can imagine what my basal/bolus ratio looks like on such a day (and on the next, when it's time to replenish those glycogen stores).

So let us hear no more about "50% basal insulin". Test basal rates, test exercise basals, test bolus numbers (i/c ratio and correction factor), and dose. Period.

As an aside, and I believe I have ranted about this before, the 450, 500, 1500, and 1800 rules are equally bogus, utter and complete fertiliser -- because they rely on the same flawed assumption of the basal-insulin percentage being a constant.

I wish you both the best of luck (and a better-informed endo) --
Felix.

Caro said...

Sandra,

I totally understand how you feel. Ever since my very first A1c test (which wasn't until I was around 12 years old!) I've had an emotional reaction to that number, even though I've known for years that I shouldn't. It is impossible not to, but at the same time please try to remember that this is just one number. It doesn't mean you have lost control or don't know what you are doing. And the occasional high A1c will not automatically lead to complications.

I agree with other comments here - that basal testing might be a good way to go and that the 50% basal assumption is not always correct. I think it provides a useful starting point, but if it doesn't work, it isn't right. I'm generally the other way - I use roughly 70% basal!

I really don't know what else to say without sounding patronising, but as always I'm thinking of you and the hard job you're doing so well.

Take a hug!

Shannon said...

It sucks feeling helpless and ineffective when caring for your child.

I can totally relate.

Beanie Baby said...

Yes. Yes yes yes. Agreeing with everyone else. Test the basals yourself. I've never, never taken fifty per cent of my insulin as basal--I take about 30 units a day, and only 12 of them are basal--and my last a1c was 6.0. Averages don't matter. What matters is what works for your son, and the only way to find that out is--a basal test.

PLus--it's summer vacation! My numbers are never as good on vacation as when I'm at work, because the schedule is wonky. And a1cs are really influenced mostly by the last 4 weeks or so of sugar levels.

The last time I listened to an endo tell me how much insulin to take, I gained 20 lbs. When I stopped, I lost it. With no change in my sugar levels or a1cs.

Tekakwitha said...

Sandra,

Let me join the crowd and say that the 50% basal insulin doesn't work for me! I average about 20 units a day and 5 of those units come from basal. It's pretty bizarre, according to my doctor, but my basal rate keeps me nice and steady during the day (I've tested a ton). And my A1c shows that this works for me!

Just hang in there, trust yourself and know that the doctor IS trying to help, they just may not know what's best for your son all the time! :)

tek

Kerri. said...

I gave a lot of thought to responding here. A1c's are "supposed" to be the benchmark of our diabetes management, or at least that's the connotation I picked up over the years.

As the diabetic, I can admit that I have always viewed it as a sort of "report card" that speaks to me success as a diabetic.

But I was wrong.

An A1c is not a report card.

Whatever the number is, it doesn't indicate how hard you and Joseph work at managing his diabetes. In range, out of range, sort of range-ish ... a balance can be achieved but it takes time. You two have put forth so much effort into understanding the disease and creating a whole new relationship dynamic between yourselves that you're set to graduate with honors.

Don't be so hard on yourself. You two will succeed with grace.

As always.

J said...

UGH puberty is coming.. Hold your breathe but not to long it should even out and you're on top of it .. unfortunatly Joseph is probably feeling as frustrated as you ... the doc said to wait a few weeks? my doc had always said give it 3 days and then call I am not sure why, but call the doc that is what they are there for... thinking of you and Joseph.

Penny said...

Oh, Sandra, I wanted to cry when I read this. I can empathize with you so much. It's just so hard getting it right. Sometimes it seems no matter how hard you try, it just isn't working.

You will find the right basals for him and you will get that A1C down (without all the lows).

Endos are nice and all, but you live with this on a daily basis. You know more what Joseph needs. Trust your instincts. Increase your basals slowly and see what happens.

Big hug to you (and Jospeh)

julia said...

Yes, exactly, three days. If he's still running low, move his basals back by 10%. What percentage did she raise them? I was always told to never do more than a 10% basal increase. And even then, only do one, maybe two at a time. This sounds like a lot of change.

Puberty SUCKS for numbers, both daily readings and a1Cs. Olivia's was 8.8 this time - up from 8.2. Her numbers have sucked these last few weeks/months.

If it were me doing this, I'd put the basal rates back to what they were and try raising them 10%. Do one for three days, check a lot and see if it helps. Then change the next one, if it needs it, and so on. You could also increase the sensitivity factor by 5 or 10 points. If he was 1:50, drop it to 1:45. I had a lot of success doing that with Olivia.

I know how frustrating this is. I've been going thru the same stuff. Sucks ass, man.

Andrea said...

Sandra~

Please, Please don't be so hard on yourself~ You (and Joseph) are doing the best you can, and that's all you can do.

I'm not a Diabetes expert by any means, but it does sound like Joseph is on a very small amount of insulin currently. Yes, it makes sense that b/c his A1c was higher than desired, there is a need for adjusting some of these rates... but I know that those changes can make a big impact (and can be scary).

I don't know how often Joseph tests now, but while he is adjusting his rates, it might be a good idea to test his blood sugar even more frequently... especially around the times where he has trouble. I really feel testing is key to control and by testing and keeping good log of those readings, it could help you improve things :).

Diabetes is a very unpredicatable and difficult disease... I know it was hard getting the news of his A1c, but I think that, in a way, it's good. I think it can definitely serve as motivation to work towards a better result next time.

I have every confidence that things will start moving in the other direction. With you and the rest of his family in his corner, I'm confident that things will improve. Joseph is a very lucky boy to have such a caring and supportive Mom. So please don't let this get you down and trust that Joseph will be okay.

Taocat said...

Sandra,
Just know that I will be thinking of you and Joseph....here's a big hug for all of you.
(........................)
Donna

Penny said...

Just so you know (even though you have more experience with this than me) we use the three day rule also and also only increase or decrease by 10% at the time. So far, this has worked well for us. Riley's basals usually need an adjustment about every 3-4 weeks.

lisa said...

Relax-whle you are aiming at low low numbers remember many of us (I Have had Type one 35 years without complications) went for many years without any knowledge of our A1c and then many years when the goal was simply to be below 9 (and I had kids at this range) and only recently has the push been to be below 7. So aim for below 7 but realize that you are looking at a lifetime of phyical changes and be poatient at working at keeping his numbers low. It takes me still several weeks to work out insulin changes. But be more aggressive with your Dr. if she does not have the time to listen to you start working with a nurse specialist in Diabetes management. When you make changes they should be willing to have you call in daily numbers and make changes till you get his pre and post meal numbers correct and his nightime numbers also.

KSC said...

In the book "Diabetes Burnout" - one that has been surprisingly good to me - they suggest training yourself to look at the numbers as ....well, numbers. For example, instead of saying that you are "testing" blood, try to say you are "checking" blood. If you think you've failed, it can all come apart emotionally. Its hard habit to break, and I'm not sure I've broken it myself, but when I get a number I don't like, I try to "come down" from my worry by remembering that the information helps me in the long run. I hope you get good advice about how to go forward, and I'm sure you've will be doing a great job.

JustLinda said...

The tightrope is hard enough to walk, but when it keeps moving, when it magically shifts or waves or shakes, the uncertainty sets in. I have no answersor advice, but I recognize the emotions. And I recognize that it would be so much harder when it's about a child, your child.

We're pulling for you... we're all pulling - for a freaking cure.

Anonymous said...

Hmm, he should be getting 50% of his Total Daily Dose from basals? When she first went on Lantus and Novolog, her Lantus dose was set by Naomi Berrie (Columbia Medical Center NYC) as 7 units a day and her Total Daily Dose was 19 to 22 units. So not QUITE half, and depending on what she ate, even a third. Since she had a diarrheal illness and could not hold down food for three days soon after being put on this regime, we could see that the basals set were right on. I would do fasting basals. Or just give protein and veggies (not as good) and test every two hours. Do one basal period a day. And let his BODY tell you what his basals are. Forget about what a doctor says they "should be."