We had a very productive visit to Lucile Packard a few weeks ago. We had a very nice Fellow sit down and talk with us for about 45 minutes--addressing all of our concerns about Bug. Then we saw the Ped. Endo. Even though we didn't get to see the head honcho, we were able to see a Ped. Endo. that took care of Bug at clinic a few years ago.
The doctors assured us that Bug is growing normally and mapped the growth curve from 2 years to 7 years. Except for one blip when she was 4, she's grown at a remarkably stable rate. The Fellow explained that kids who have a thyroid often don't grow at stable rate, so we should take some comfort in the curve.
We talked about puberty and what to expect: will it be challenging, will it be late, normal, etc. They assured us that as long as she is consistent with her medication then she should develop on a similar path to me. Whew!
I have to say it's funny talking about it in front of Bug when she really has no idea what we're talking about. And she's not super inquisitive, so she doesn't ask. Maybe she internalizes it more than I know . . . we'll see. I'm really not ready to address puberty yet--I want her to stay my little girl.
The Ped. Endo expressed the same theory our pediatrician has about why Bug's blood tests and medication fluctuate so much. They both believe that Bug has some issue with absorption. So it isn't really the thyroid or pituitary, but the gut.
Their thinking goes along with the pattern of questions I get after every blood test: "Is she taking this with iron?", "Is she drinking soy when taking her medication?".
Since the middle of August we've moved the medication taking to the morning. Bug gets up from bed, takes the medication, and then goes about her routine. She cannot eat until half an hour has passed. I'm hoping this stabilizes the blood results and we can get to the bottom of the absorption issue.
Both doctors have encouraged us to stretch out the blood tests to 4-6 months. I told them both that I wasn't comfortable going that long until we know that this morning routine works. Twice Bug has fallen off the range by a whole lot and it took us 6 months or more to get back in normal range. It's too risky yet.