Tuesday, July 18, 2006

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.

13 comments:

Felix Kasza said...

Your best is plenty good enough. You go -- both of you!

Cheers,
Felix.

Vivian said...

Sandra,
You are a great mom and you know your child better than anyone. I love that the doctors are smart and that they are our safety net but sometimes they miss the mark. You have certainly been dealing with this long enough and educated yourself well enough to be able to figure this mess out. We were just told by our doctor to lower Daniel's Lantus and let him run high because he has been having some lows. But since taking this advice we have numbers like tonight at dinner of 406! This is not right. I know the reason for the lows and adjusting his Lantus is not really the answer. Trust yourself. Big hugs to your whole family and just know we are all pulling for ya. Good to see the strong Sandra coming back. =)

Nicole P said...

Sandra,

I'm sorry I didn't get around to commenting on your last post.

I really admire your strength - and your willingness and ability - to think all of this through, stay level-headed, and search for answers that you, Joseph, and your family are comfortable with.

I feel like I know some of what you're going through at the moment. I've really struggled lately with not feeling like a total failure as the new drug, basal testing, and my bloodsugar bouncing like a rubber ball have revealed that some of what I'd been doing might not have been right on. I've also, though, stood up and said something each time I thought that something I was doing was right on - and I've provided the proof for the doctor. I've learned after 25 years with the disease that you've got to swallow some of the shame and then make your point anyhow. Doctors can't know everything about every patient. It's been a tough road these past weeks, but I think I've held my own. Which is really, all we can do, isn't it? Hold our own against the stacks of challenges this damned disease presents....

Jamie said...

I apologize for not commenting on the last post too, but I really couldn't - I'm not familiar with the pump and how it all works.

I think this post is a good one, and I say you're doing a GREAT job with Joseph. I think as good as our endo's are, sometimes they focus too much on the science behind the disease rather than the individual. It's true - what works for one person doesn't necessarily work for the next. YOU know what works and what doesn't work for Joseph. There are so many factors coming into play here - puberty being a huge one, that it's almost impossible to use one set of rules when it comes to control of this disease. Danielle, although not in puberty, has been the same way since day 1. EVERY day is different around here - EVERY day I have to almost "wing it" and hope for the best. This bothers me to no end, but I cannot work with a set insulin:carb ratio - I can't - it doesn't work.

You know what's best, you know what works - continue doing what you're doing .... between you and Joseph, you'll work through this together :)

Big hugs coming your way - and a huge pat on the back ... for both of you.

Sandra Miller said...

Felix-

Thanks for the vote of confidence -- I'll definitely take one of those :-)

Vivian-

Thank you, too.

I think you're absolutely right about docs sometimes missing the mark. Joseph's endo was actually the first to tell me this-- I just think that the rise in his A1c prompted her to take the bull by the horns, so to speak.

Reading about Daniel's highs does make me think his doc could be missing something here. The only advice I can offer is listen to the doc-- but if his suggestion is not working, then follow your instincts.

Nicole,

Holding our own is exactly what we're aiming for right now.

I'm glad to read that you're doing the same. Your adjustment to Symlin sounds almost like starting on the pump-- just so much trial and error. Good luck with that.

And thanks for sharing your thoughts.

Jamie-

I'll take those hugs.

What you write about Danielle could in many ways apply to Joseph as well.

Take basal testing-- I need to find out if these new afternoon rates are good, but he just keeps going low before we can do the damn test. One day it's an early morning correction stacking on top of his breakfast bolus, the next, it's an unexpected increase in activity.

We'll get there, but it's not gonna be easy.

And don't even get me started on the carb bolus. We can never use a hard and fast formula.

Time of day, activity prior to eating, bg before eating, bg curve (i.e., dropping, level or rising), type of food (high fat, high protein, etc..)... all of these factors and more come into play when deciding both bolus timing and which I:C ratio to use.

And while it sounds so complicated when I write it all down, all these calculations and considerations take very little time.

It's become just something we do before our son eats.

Crazy, isn't it?

julia said...

thirty-three percent???! Ack! No wonder he's bottoming out. That's a huge increase. O's CDE would have my head if I did that to her.

Have you spoken with the endo again? Gone over your concerns? Maybe a phone call - or an email, if the practise does that - saying what you've said here, might help. You've explained it all so well here and it's hard to do that when you get the a1C result and are kind of overwhelmed by it. I'd delineate your ideas and tell THEM what you want to do. He's your son, you know him best, you know how he reacts to insulin and food. They don't. They only know the norm, inasmuch as this stupid disease has a norm.

Good luck. You're doing a great job and as you reminded me, this puberty stuff sucks. But you have all of us to bounce things off of and that always helps.

Rachel said...

Unlike Joseph, my husband was diagnosed in the definite middle of puberty. and yes, he had his highs and he had his lows, from all accounts (from him and his parents). It's a difficult path, puberty & type 1, from what I understand.

I am thoroughly convinced that although control may seem rocky during adolescence - it is the habits that start then (or even before) is what helps kids with type 1. Even if they're running too high, they can be taught to manage their highs and lows (pump or MDI wise) and in the long run, THAT is what matters. So, there may be a high A1C here and there, but thinking in long-term management rather than the short-term control - I really believe that has helped my husband.

J said...

Like I have said before but DO NOT MIND saying again you the best mom I read about I know you on the ball I think just realizing that at times this go screwy and just try not to feel to guilty bacause your all doing the best you can.. you can not ask for more and you know what I know you will keep on trying because that is what a good mom does but have some comfort in knowing that nature sure will take its course and try not to beat yourself up or wonder what you can do different because you doing that right now ... Joseph is gonna get thru this fine and so will you not to say it might leave some headaches before during and after all this damn puberty stuff :-)

Tiffany said...

Sandra,
You are competent, intelligent, knowledgeable, and you are doing a FANTASTIC job helping Joseph manage his diabetes. If I had to choose between you and the doctor, I'd choose you in a second.

When I was going through puberty my A1c target changed to 8.0% or less. It is just not realistic to expect a child to maintain a target < 7.0% when the child's body is doing everything backwards, sideways, and upside-down. The goal, at this point, needs to change from the value of both the A1c as a number and BG tests, to the deviation of blood glucose amounts.
Avoid the excessive swings. Shoot for an average BG of 180 or less per day, with an average deviation of no more than 36. (Walsh talks about deviation in Pumping Insulin)

This is what my mom and I did during the hellish years at the suggestion of my peds endo, and it helped more than I can say.

And if you don't like the 30% basal increase (hell, I don't like the increase!) then change it. The only real benefit of the whole basal:bolus ratio thing is to give people somewhere to start, not as a guide for someone who's ratios have been established and relatively successful, as Joseph's have.

Your best is always pretty darn awesome, if you ask me.

KSC said...

Your dedication is so amazing.

Sandra Miller said...

Julia,

I agree-- 33% is a huge change.

But on the days that Joseph has been completely inactive (we've had a few rainy days recently to test this) this rate seems to work well.

On the other hand, brief spurts of activity or longer periods of being mildly active (i.e., just hanging out outside) will send him low.

Thus, I may create more than one set of basals-- utilizing the doc's new rates only on days when we're sure Joseph is going to be really inactive (i.e., watching Saturday morning cartoons :-) and a set of lower alternative rates when he'll be active (up to this point we've been using temp basals for these situations).

Now, I haven't contacted the doc about this because, quite frankly, I don't go through the clinic when changing rates-- we learned long ago that rates set by the clinic often have to be re-worked not long after implementing them.

That said, I do like going in for those quarterly visits and having a fresh pair of trained eyes look over the logs-- and there have been times when his endo has seen something that I've missed.

It's also just good to talk out what we're doing and why.

Though this time, that obviously did not happen...

Rachel-

Excellent point. I think that instilling good habits has to be the silver lining as we struggle with these bg (and emotional) ups and downs.

KSC-

Thanks.

And Tiffany-

As always, thank you so much for sharing your experience. I'll review that section of Walsh's book this afternoon.

I gotta say, excessive swings have been an issue for us for a while.

Rebounds from exercise-induced lows have been huge (primarily from lows due to unexpected, short bursts of activity-- something I believe is unavoidable with a normal, active kid).

Further, more often than not, Joseph experiences a 2-hour postprandial spike. If we try to correct (even with as little as .1 for a high in the 200s), he goes low within 1-2 hours after that!

But if we leave it be, he's usually right back in normal range by the 4-hour mark.

Unfortunately, changing the timing of his bolus has no impact on this.

We've also tried adjusting his basal rate to perhaps soften the spike, only to have him go low by the 3-hour mark!

Grrr.

(Interestingly, his doc has never been all that worried about these spikes because he's in range by 4 hours post-meal... )

But again, I'll revisit Walsh, keep testing and try to hone in on ways to minimize these spikes....

I think the shift in focus you suggest makes a lot of sense.

Felix Kasza said...

Hi Sandra,

[...] Joseph experiences a 2-hour postprandial spike [....]

If bolusing early does not influence the height or timing of the spike, I can only think of two things -- insulin i.v., and/or a low-glycaemic diet.

Insulin i.v.: Don't go there. It's not a home treatment. :-)

Low-GL diet: One does not necessarily have to live on broccoli and rutabaga to soften out the spikes a little. Besides, that approach would probably be doomed anyway with a teenager.

It helps to shift the nutrient balance from more carbs to more protein (assuming, of course, that Joseph does not have kidney trouble); more fat helps delaying absorption; substituting other sides for baked or fried potatoes or for bread goes a long way.

Then, there is Better Living Through Chemistry: Symlin and acarbose (danger -- makes glucose treatment of lows erratic) are the ones I am familiar with.

The real question is, of course, how much bother you and Joseph are willing to go through to curb those spikes. In the past years, research has more and more strongly indicated that even with a good HbA1c, spikes (actually, standard deviation from mean BG) are predictive of later complications. On the other hand, as a teen I thought more about the next slice of pizza than about the state of my eyes thirty years hence ....

Cheers,
Felix.

Anonymous said...

Gary Scheiner has a Powerpoint Presentation on children with diabetes website on postprandial highs (I'm sure you must have seen it). I am nervous about giving rapid acting insulin so many minutes prior to eating but will ask the endo. The suggestion is for high glycemic foods to bolus 15 to 20 minutes prior to eating. We are using a pump. Moderate glycemic index (ice cream) bolus before eating and for low glycemic foods bolus 10 to 15 minutes after eating (on pump just use a combo bolus). I will experiment and hope it works. I certainly do like the easy to implement idea of using 10 to 15 minutes of MILD activity after eating. Substituting low glycemic index foods where possible is another easy change. The continuous monitors are here and being perfected. So before too long these spikes should not be a problem.