Methsuximide?
I guess after Methsuximide fails we start trying meds again with different combinations. The neurologist wants Topamax or the ketogenic diet. Topamax knocks her out and the ketogenic diet, using real food this time instead of formula, just might knock us out. For a while now we have felt like there really isn't anything that will stop these seizures, but when neurology wants you to circle back around that sort of seals the deal. Mya has been decently alert on keppra, though still seizing lots-o-daily, so there is a part of me that wants to just stop here. And then my heart sinks a little bit. As a side note, all of my friends with similar checklists are moving to Colorado. What a frustrating time we live in. Kids are seizing and families are moving lives just for hope while politicians are playing games.
We saw neurology and endocrynology this morning and did 4-year check-ups this afternoon. In addition to seizure med adjustments the neurologist noted Mya's 'tan' and so she is ordering some lab work to check cortisol levels for adrenal insufficiency. I guess this could lead to sedation and a suppressed immune system, neither of which would be too surprising at this point. So we have to head back for lab work some morning this week. We are also following up with the sleep lab neurologist regarding some of the numbers we have been seeing on the monitor at night. She regularly desats to the 70s for extended periods and we are unable to bring her back up or wake her. Hopefully this is just a matter of adjusting her bipap settings. No cans of worms please. Mya has been fighting some congestion this week and as Bernie put it, her equipment has been migrating to the living room. I have appreciated being able to increase vest treatments and monitor her throughout the day as well as supplement her oxygen rather than keep her confined to her room as we would have in the past. I also like that I have a better guide when it comes to deciding whether to toss my sleeping child on the school bus, but yeah, let's keep all that for the night time. Keep breathing kiddo.
For the numbers:
Ella: 35 lbs, 40 inches tall -> 50th percentile
Mya: 26.9 lbs, 38.5 inches tall -> 5th & 25th percentile
Clayton: 32.8 lbs, 39.5 inches tall -> 25th percentile
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