Tuesday, January 19, 2010

Endo Rant and an Ode to Dr. M

Riley had his endo appointment on Friday. His A1C had gone up from 7.2 to 7.8. I wasn’t surprised. On the way to the appointment Riley and I took a guess as to what his A1C would be. I said 7.8 and he said 8.1. I’m glad, at least, that I was right and he was wrong.

December was pretty rough on his numbers. There were highs and lows (mainly highs) with no pattern to them. Still, I knew I hadn’t been on top of his numbers like I should. I knew I didn’t adjust basals as often as I should. I have no excuse as to why. I just know I could have, should have, done better.

This was our second visit to this endo. Our first visit was quite pleasant. I liked him and he was quite pleased with Riley’s A1C of 7.2 and said his goal for Riley was 7.5. Last time he didn’t recommend much of anything other than a slight little basal increase. He didn’t like that Riley’s basals were a little higher than his bolus, but other than that he was pleased. He did say that sometimes when basals get like that he orders to have the child to go on a set basal rate all day. That was not a pleasant thought for me.

I knew, without a shadow of a doubt, that Riley’s A1C would be above 7.5, so I wondered what the doctor would say this time. I didn’t know him well enough to know if he’d fuss at me or not.

The nurse came in first. She looked at the numbers and graphs I had printed out from excel. She looked at his basal to bolus ratio. I told her we’d had a rough couple of months to which she replied, “I can see that.” Then, she made a comment that he had one night that he was 57 at 3 AM and another where he was 315. She just raised her eyebrows like that had never happened before. But, unfortunately it has, way too many times to count. That is why I have been sleep deprived for the past 4 ½ years.

Then, she wanted to know how often we change sets. I told her every 3 days. She suggested we try every 2 days instead to see if that helped. I told her that I really didn’t want to do that, that a needle stick every 3 days was enough. I also told her that Riley goes low with most site changes, even though I don’t fill his canula and decrease his basal 60% for 3.5 hours. It’s just one of those things. (Not to mention the increased cost…)

She looked at me and said, “It’s because it’s fresh insulin. That’s why he goes low.”

I looked at her and said nothing. I know from my (almost) 4 years of experience with the pump that it is not fresh insulin. That’s what I used to think too. But, there have been times when Riley’s insulin was starting to get low and it wasn’t quite time for a site change and I just put in fresh insulin without changing his set and he didn’t go low at all. She went on to say that since that is what causes the lows that changing every 2 days would make more sense because the insulin wouldn’t seem as new.

Huh? She lost me there. Again, I looked at her and said nothing. Then she said we’d see what the doctor said about it.

She checked out Riley’s pump sites and said they looked fine. Then, she checked out his feet, which, thankfully, were fine too.

Then, I mentioned how I knew his A1C would be up. She went out to check and came back saying it was 7.8. I guess she saw me cringe and she said, “Oh, don’t worry about that. We have kids that come in with 9’s and 10’s.” Then, she shut the door and walked away.

Then, the doctor came in. He said that Riley’s A1C was up from last time but that it was still “very good”. He went on to say that his goal for Riley was 8.0, so 7.8 was just fine. So, let me get this straight? When he was 7.2 his goal was 7.5, but now that he’s 7.8 his goal is 8.0? I don’t get it. I don’t go to the doctor’s office to be pacified. I go there for help. I don’t go to get a pat on the back and to get told I’m doing a good job when I know that I’m not. They didn’t even ask how often I’d been logging and adjusting basals.

Then, the doctor went on to say, “I’ve had kids in here who’s A1Cs were 13 or 14. So, 7.8 is good.”

Let me just stop here. I have NEVER compared my kids with other kids. I have NEVER compared standards for my kids with other people’s kids. I HATE it when people do that. My son is not everyone else’s son. He is my son and I know what his A1C could be. That’s like Holden or Riley making a “C” in a class. They have always been capable of straight A’s. It doesn’t matter to me that everyone else in the class made a C too. What matters is that I know what kind of grades my children are capable of making. I also know that some kids are just not capable of that. Some kids are happy if they make a “D” and they really worked for that D. I know that. I work in a school system. Every child is not the same. And, if my children were only capable of making a C or D, then I’d be quite pleased with a C. But, they are capable of all A’s and B’s so that’s what I expect. I really, really don’t care what the kid next to them made.

If I were only capable of having Riley’s A1C in the high 7’s, then I guess I’d have to be OK with that. But, I know I’m capable of better, at least for now. I also know that once he hits puberty and his hormones go all out of whack I might be elated to have it at 7.8.

Furthermore, I know there are parents reading this right now who would be thrilled with a 7.8 and don’t understand why it bothers me. I know parents who are very vigilant with their children’s logging and adjusting of basals and they still don’t see 7’s very often. For whatever reason, their children’s sugars are harder to stabilize. Which brings me back to my earlier point that everyone is different and shouldn’t be compared to one another.

Now, that I’ve ranted about that for a bit, let me say that the 7.8 didn’t upset me all that much (contrary to all the stuff I just said). I knew that’s what it would be and I knew what I needed to do to see that change. He’s been that high before and I’ve gotten it down. I also know that it happens from time to time and you make adjustments and move forward.

What got me was the constant comparing of how bad his number could have been, that his A1C wasn’t a “bad” as a lot of kids. I kind of felt like I was being chastised for caring about his A1C.

OK, let me continue with my rant, which at this point, is probably incoherent to most of you.

The doctor went on to say that Riley’s basal to bolus ratio was dead-on. It was 50/50 just like it should be. But, you see, I know that Riley does better with it being 45/55 or so. I know that doesn’t seem like a big difference but with his tiny doses, it is. For example if his total daily dose of insulin is 16, then a 50% basal would be 8.0. A 55% basal would be 8.8. To the adults out there, that may not seem like much of a difference. But, for Riley it is a huge difference. And, I know from experience that’s really where it needs to be.

Then, the doctor goes on to say that sometimes parents do too much. And, then went on to say that I am one of those parents. He said I needed to back off a bit and stop checking so often. He said that there was no reason to check Riley 2 hours after he had breakfast because I knew he’d be high anyway. First off, I don’t check Riley 2 hours after he eats unless he says he feels low or something. The only time Riley’s sugars are checked is at meals and snacks and if he says he feels low. He is also checked a couple of times in the middle of the night. I’ve already gone over why we do that. For example, Riley eats breakfast at 7 AM, he is not checked again until 10:45 AM when he is about to eat lunch at school; then, again at 1:45 PM for snack. Excessive, I don’t think so. Often, unless he says he feels low, he’s not checked again until between 5-6 PM when he eats supper.

Secondly, when I’m trying to get his basals right I’ll probably test more. Because, guess what? I don’t want him in the 300s every single day 2 hours after breakfast. That can be fixed most of the time. Plus, how do I know what his carb coverage should be without testing after meals? (Man, you should see me typing this right now. I bet my keyboard is glad it doesn’t have feeling.)

Then, the best part of all, the doctor told me that because I was doing too much for my child, I had probably gotten his basals all out of whack. He didn’t quite use those words, but that’s basically what he said. He then said he had taken Riley’s total basal and divided it by 24 and come up with 0.35. He said he wanted Riley’s basal to be 0.35 all day and all night. Then, he said he wanted his carb coverage to be the same all day too.

I had kept my mouth shut up until then but when he said that I had to say something. Riley’s carb coverage is about the same all day, for the most part, anywhere from 25-27g. But, at breakfast, it is 20g. It has to be. Otherwise he’d be really, really high. When I told him that he said, “OK, we’ll keep his breakfast coverage at 20g”, like he was throwing me a bone or something.

And, I was thinking, “You’re darn right I’m keeping it at 20g. I don’t need your permission to do that.”

Anyway, that’s the gist of what went on. He handed me my instructions and sent us on our way.

I know I’ve made him sound like a horrible person. But, I don’t really think that he is. I think it all boils down to the fact that we had the very best endo in the world before. After you’ve had the best, everyone else pales in comparison.

Dr. M would have looked at those sugars in the middle of the night and said, “Why do you think he was 57 one night and 315 the next? Was it increased activity? Did he eat something different for supper?” And, if there wasn’t anything out of the ordinary she would chalk it up to just one of those things and move on.

She would always ask Riley how he was doing. The question she always asked him, without fail, even when he was 3, was: “Is diabetes keeping you from doing anything you want to do?” She always asked how school was going and how soccer was. During this endo visit Riley lay on the bed reading a book the whole time. The only thing the doctor asked him was what he got for Christmas. Otherwise, it was like he wasn’t even in the room.

Riley always answered Dr. M’s question with a “no”. But, I know that if he ever said yes, she and he would come up with a plan of how to change it.

Also, when Riley’s A1C was up to 7.8 she would say she was OK with it, but she knew I wasn’t so we’d sit and figure out what to do about it. On our very first visit, she brought up how much we were checking in the middle of the night. When I told her why, she never brought it up again.

Dr. M would always make suggestions about what to do and then ask me what I thought. There were times when our opinions differed. She always said that she trusted my instincts and we’d try it like I wanted it. She said more than one time she would look at his basals and wonder why it was like it was and then she’d look at his sugars and see why I had done what I had done.

I guess it all boils down to the fact that Dr. M may have gone to years and years of medical school and she had years and years of pediatric endocrinology under her belt, but, she still realized that, when it came down to it, I was the expert when it came to my son. My 4+ years of experience with his disease trumped her 30+ every time. Because, we all know everyone with D is different. There are no cookie cutters when it comes to this disease. Dr. M got it. I’m afraid many doctors do not.

OK, rant over. I don’t despise Riley’s doctor. I think he’s doing what he thinks is best. I don’t have plans to change endos any time soon. (unless, Dr. M comes out of retirement)

And, by the way, I didn’t make Riley’s basals 0.35 across the board. I made a few basal changes and that was it. I’m not saying that the time won’t come that I might have to try it, but that time is not right now.

When, I was talking to Michael about it, he said, “What would Dr. M tell you to do?” I said she would tell me to trust my instincts and he said that is exactly what I should do.

So, right or wrong, that’s what I’m doing.

11 comments:

phonelady said...

yeah i remember one drs response to my having a 315 at midnight and then a 57 at 6 am was oh wow and then I knew something was wrong wirh him not me LOL !!! needless to say I dont think diabetes was his cup of tea . I never went back and he was too scared and shaking all the time he touched me and that made me uncomfortable . You have to know what you are doing as well as your dr .

Meri said...

I'm going to have to say you are right on this one! Holy Moly! I shook my head during the whole post. Carb ratios and basels should be different throughout the day...that is why we have the option to set so many.

Is he a pediatric Endo? I miss your Dr. M too. Follow your gut. You know what to do...and no...I really don't think you are "over managing" your son, AND I agree, there is no room for comparing in the world of T1. Everyone is different. You know what you can acheive!

Good luck! You are doing the right thing. I always try to trust doctors and I, like you, always listen to what they have to say and even sometimes give it a try for a few days. But in the end, you know what is right for your child. :)

Jennifer said...

I am with Meri on this one. Doctor's often have good advice and may think up things that we don't but at the end of the day, you have to do what you feel is best for your child.

I chucked a little when you said about your keyboard not having feelings. I could just picture you sitting there typing this and I know how hard I would have been hitting those keys.

Good for you for doing what you think is best. And thanks for sharing.

Penny said...

Meri,

Yes, he is a pediatric endo. And, he trained under Dr. M...

Amy said...

Oh Penny....I shook my head, too, through the whole post! We just got our A1C back- 8.1- so I'm feeling ya! Not bad, but I know we can do better.

Hang in there....Riley is doing great and you are doing an amazing job with him!!!

Wendy said...

Oh dear...I'm failing...FAILING I TELL YA!!!!!

Addy's basal change...ummm...ALOT - as do her ratios and correction factors. I hear ya on the 8.0 vs 8.8 deal. That little bit makes ALOT of difference.

Anyway, you know the game and you're on top of it.

He can shut his door and go home at the end of the day.

As for the hairy eyeball when the nurse was looking over his night time numbers...well...it's a good thing she couldn't see the disgusted look I had on my face regarding her behavior...

Sigh. Another day. Keep up the good work!

Jonah said...

I don't get why you're sticking with this guy. It sounds like his endocrine training didn't serve him well- he thinks every diabetic should have 50% basal, 50% bolus? - he doesn't have people skills, he's settling for way less than you deserve, and he's not likely to make Riley feel motivated and good. Find somebody else.

Paige said...

I know you know that you are doing the right thing and have the knowledge and experience to back you up; it's hard, though, to not have the support, the expertise, the ATTENTION of your endo. Frustrating.

Bernard said...

I cannot imagine how hard this is on you. I have days where I do all the right things and get lousy numbers, or days when I eat poorly and get great numbers. It's the nature of this stinking disease.

I wonder if the book Think Like a Pancreas might help. I found it useful, without being overwhelming.

It's clear you're doing your best, I hope you can figure out something that works better for Riley and you.

Shannon said...

Yep, trust your instincts.

I don't think a parent can do enough. We check Brendon all the time and in school, much more often.

As for the nurse making note of a high and a low, those were a couple of instances of extremes. They weren't showing up on a regular basis.

Our endo and nurse would make note, but not make a big deal of it. "Shit" happens. It's the overall numbers that they look at.

Brendon has had high numbers after site changes and we recently realized it's because his butt is no good for sites right now. Too much muscle and not enough fat.

His numbers do much better in his stomach.

I don't know what the nurse was talking about when she said fresh insulin does the trick. Brendon could be on a site for the 3rd day and still have good numbers.

I believe it's the site...where it's located...and/or how old it is that affects numbers if it isn't activity or food or stress (good or bad) that is affecting them.

Brendon's A1C's have been in the high 7's for months and even reached 8.1. Although it's OK, it's still not what we want him to be at. I'd rather see him in the low 7's or even in the high 6's. I don't care what other kids have (I wish they had excellent A1C's) and will not say "Oh Brendon is perfectly fine because there are other kids with a lot worse." Well, my standards are my own and not based on someone else's. So we work on getting him lower, but control isn't always in our hands, unfortunately.

I guess all of my rambling is to say that I totally get you.

Anonymous said...

Well, if you check two hours after breakfast and he is high, you can start a correction. And he will be high for 3.5 hours. Or you can wait until the next meal and correct and he will be high 5.5 hours. I would rather find out in two hours. Trust your own instincts.