We went back to Children’s Hospital today to check in with Norah’s endocrinologist, record Norah’s stats, and introduce Ben to the doctor. Because Dr. Fleisch is a “fellow” (a doctor who is learning more about endocrinology), we also meet with whichever attending physician is there when we are.
Today the attending was Dr. Spack. It seems like we learn a little more about Norah’s condition at each visit, so maybe someday we’ll know it all. Maybe not. Aliya was with us, so Dr. Spack took one of Norah’s arms and one of Aliya’s and told all of us to feel the difference. Norah’s skin literally feels like a brand new baby’s skin. It’s another symptom of hyperthyroidism – her skin is constantly regenerating. Everyone’s skin cells die off and are replaced with new cells, but like everything else in her body, Norah’s skin is exfoliating at high speed.
Dr. Spack also said that Norah’s thyroid is swollen to at least 4 times it’s normal size or more. It’s hard to know because typically your thyroid is not visible. He said that because her thyroid levels are so high and she has a “storehouse” of hormones in her lump, it could be a while before we see her symptoms resolve completely. I asked him to give me a guesstimate and he said 4-6 months. He said that when her levels are back to normal we’re not going to believe the difference in her behavior. He said that the most obvious physical differenc we’d see would be the change in her eyes.
I have to say, it’s validating to hear that Norah is more active than a typical 4-year-old and comforting to know that she might eventually calm down. I can only imagine what her academic capability will be once her body slows down. When I heard the 4-6 month timeframe I asked if he’d give ME a prescription, but I guess I can tough it out. The current plan is to check Norah’s antibodies (Norah thought the doctor said, “Norah has an ant-body.”) in 2 years and see if she can be weaned off the medication. If she can’t, they may recommend thyroid ablation when she is around 10. We’ll play it by ear.
I went back through a bunch of old photos to try to pinpoint when the lump arrived, and it looks like it started swelling at the end of December. Looking at it now, it’s hard to believe I didn’t notice it because it’s so obvious. There are other photos that don’t show anything – I don’t know if the swelling goes up and down, or if it just wasn’t noticeable in certain positions. Here’s the progression:
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