Thursday, August 18, 2011

A 9 and a Knot.

Well,  nothing like feeling like you just stepped out of the prinicpal's office when you leave your endo visit.  I quite enjoy having every blood sugar, every bolus, in fact every decision I made over the last week  questioned, frowned at, and second-guessed - NOT.  Josh's A1c was up to 9 form 8.7 in April. I'm bummed. I really thought we were doing a bit better. Guess not.

From the start I knew things were once again not going to go well. She asked me what meds he was on and when I told her about the OCD meds he had been prescribed, she started asking about our homeschooling and whether or not he had friends. Does he see them at least once a week? Are we part of a homeschool group? Did we school during the summer? Now I ask you, what does one thing have to do with the other? From day 1 she has questioned his anxiety and blamed it on me testing him too much and not letting him just "be a little boy away from his diabetes."  I'm sorry but when a psychologist and a psychiatrist both diagnose OCD/Anxiety and when said meds actually help his symptoms - go figure. AND when I test him 6-8 times a day, I think she is a little off. Just saying. But then she is clearly now reaching into homeschooling and wondering if he has any friends? Give me a break. So I was already starting off defensive right away. Great way to start the session.

Then she says his A1c is up and starts going over each number on his log one at a time asking why did you do this? What happened here? Why would you bolus here?  Why not test here? Why test here?
She does not like me testing at night. She now does not want me to bolus at night at all unless he is over 300 so that she can see what his basals are doing. She also wants him to be on a strict meal schedule during the day of only eating every 3 hours. I am only to test him when he is going to eat or if he feels low. If he is hungry in between he can have a 0 carb snack or wait. (Oh he is going to LOVE that!) She says, "He's 7. He can be disciplined and eat every 3 hours. There's no reason he needs to eat any more than that.If he wasa in school he wouldn't be able to eat whenever he wanted to. He would have to wait."  Um, yes, one of the hundred reasons he's NOT in school.  Also, "There is no reason you need to test during the night if his basals are doing what they are supposed to be doing."
But HELLO???  His basals AREN'T doing what they are supposed to be doing. BG's are all over the place remember? A1c is 9??   She ended with "Does that all make sense?"

My response was, "No, honestly, it doesn't.  If I am trying to reduce his A1c, why would I not bolus for every high BG he has, not matter how high or what time of day it is? If you test him and bolus all during his waking 12 hours, why would you not test him and bolus during his sleeping 12 hours? The whole point of going on the pump is to give him more freedom. To allow him to eat when he wants to eat. To be able to bolus him for even small highs. To get tighter control. Why would you be asking me to let so much go?"  She basically said all the work I'm doing isn't working because his A1c is 9 and everything is getting jumbled up because he is eating too often and we are testing too often and correcting too often (again 6-8 times a day) so we are not able to clearly see what to do with the basals.  I tried to explain that all I was doing was what the pump was telling me to do! I bolus when the pump suggests that I do so. I test when the pump alarm reminds us to test, or when he eats, or when he feels low. Our pump alarms every 3 hours to remind us to test. She was shocked by this and said MOST people don't have that on, and that THEY wouldn't have turned that setting on, and she made sure the pump specialist turned that off for us. Newsflash lady I didn't turn it on either!! It's just what our pump does! Someone set it to "on" but it wasn't ME!  I guess she just thinks I'm some kind of nut. That's the feeling I get anyway. Shouldn't I feel supported by this person rather than challenged??

I agreed to at least try what she is saying and see how it goes. I was feeling fairly pummeled by that time. And also, I guess I just don't want to feel like I'm not hearing what I want to hear from her so I'm gonna hit the road. Yes, her bedside manner sucks. Yes, I really am not liking her. But I am willing to at least try what she's saying and see if it makes a difference. Whether it does or not, I still intend to change docs. It's just a matter of when. This one is clearly not a good fit for me. Is there a point to hanging in there a few more weeks? I'm not sure. I'm too irritated to make a rational decision. So basically for now we are on a strict eating and testing schedule for the next 6 weeks  to try to figure out his basals and get things on a better track. AND I am supposed to send her in numbers every week. I feel like I am on probation or something.
Just LOVED walking out of there with a knot in my stomach. Just what I needed to go out and face another month of D!

2 comments:

  1. Oh Wendy I am sorry! That doc needs to go take a class on how to be more pationate! Hang in there. We all know you do the very best you can. SHe needs to go fly a kite!!
    hugs....Maree

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  2. Wow..against BG checking. You might want to change endo. dr. My daughter was just dxd but dr. said to check about 10times a day, it's better safe than sorry. I don't think I could handle checking her any less I'd be a nervous reck. Adjusting times and dosages for kids is so hard drs & nurses need to know one system doesn't fit all kids. Good Luck!

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