Wednesday, August 5, 2009

It Means nothing

Soooooo...the dreaded Endo appointment for Maddie today. First, let me say this... I dont trust the A1c's and certainly not the finger poke version! Maddison's last A1c in April was 7.3% and I was devastated. I felt that we had been doing extraordinarily well, within target 80% of the time according to meter readings in those last 6 weeks before having it tested. I was convinced that A1c was going to reflect a 6 range. Don't get me wrong, 7.3% was still good, but I was sure that it would come back lower. I was shocked it was "so high" and it was devastating because I ended up not trusting those dang A1c's at all! These last few A1c's have meant NOTHING to me. I just dont trust them. They never reflect what we actually think they should be!

In January Maddison's A1c was 6.9% and I was surprised. I thought it would be MUCH higher. Her numbers seemed terrible so often. So? Whats the deal? The A1c never comes back how I expect it too. Todays A1c was 7.2%......I was expecting at least a 7.5% since summer Chaos and bad sites have been common. But of course, this last week of vacation Maddison has had many, many lows. Which is why I think her A1c is actually much higher. What good is the A1c if this last week has reflected highly on the result? Has it? Who the heck knows!

Stupid A1c test. I dont like you. There has to be a better way. I'll take this 7.2 lightly. I know Maddison has been randomly high too often. Way too often this summer. This A1c really means nothing to me today. Nothing. I guess thats a good thing. I know I'm doing my absolute best to manage, thats all that matters.

I also talked to Dr D about a new family HLA abnormality that tends to be genetic, so Dr D had a slew of lab work ordered for Maddison. The higher panel Celiac, HLA genetic testing, yearly labs....all kinds of stuff. I tried to convince Maddison to get her labs drawn as we were leaving, but she resisted and wants to use EMLA. I dont want her to be dependant on that stuff. I want her to tough it out. But, who am I to say....she puts up with enough pain already.

Dr D seems to be suggesting the CGM to many patients lately, according to those in our local support group. I think its great that Dr D advocates the CGM for her patients. You wont find that often, especially in a Pediatric Endo practice. Dr D asked me about the CGM today too. My response was to go ahead and try for coverage. But, I have a love/hate impression of it already. I know enough from CWD parents and our support group parents that the learning curve is tremendous. I dont think I could handle it. If I see anymore numbers I think I would lose it. If/when I see spikes after eating, I think I would freak. I like to think I have those controlled.......Maybe if I use myself as a guinea pig first....I dont know. I cant imagine having ANOTHER set of numbers to analyze! I always TRY TRY TRY to fix every number.....could you imagine how seeing CGM data would push me overboard?

But yes, I think we are testing Maddison too much, (10-15 times/day) I would love to be able to cut back. I dont want alarms interrupting Maddison's day, with school approaching she already visits the nurse too much! I just dont know. Last year returning to school Maddison's numbers were too high every morning at school for 2 straight months. I know the CGM could be the answer.......I also just dont want Maddison to look like a little robot with all that mechanical gear. I also think I have gotten much better at being aggressive with those morning numbers when they go wonky.....after the whole 29 low blood sugar at school last year I really backed off of making "drastic" changes, which meant I would wait 3 days to see a result. We all know how 3 days turns to a week, and a week into 2 weeks so quickly. Thats why last year back to school was so tough. I was too cautious. This WILL be a better year! I've come a long way since then!

CGM....I'm not so sure. I keep saying when Maddison's A1c hits 8 or higher I will consider it. Right now all I know is that silly 7.2 means nothing. I'm numb to it. I'm irritated with it, because I just dont trust it. I have the log to show. The CGM has the whole picture I suppose......but is it really necessary? I dont want Maddison to hate Diabetes because the CGM is such a pain. I dont want Maddison to have that needle inserted if not necessary. I dont want to tape up her entire sensor area leaving her skin raw and painful. I dont want Diabetes to be any more visible than it is I guess.

1 comment:

Penny said...

Riley's endo uses the finger prick A1C machine and at his last visit he clocked in at 7.9. I was shocked. I told his endo there was no way it could be right. She agreed to check it again and it came back at 7.4. That was better, but I still expected it to be a tad lower than that.

So, I don't know how accurate they are either. My guess is not very.