Well, after Mira went up on her Diamox (Acetazolamide) she will quickly come back down. We started increasing her dosage on Monday after a discussion with her neurologist, from 18mg/kg to 28mg/kg, and by today, she was really having some adverse reactions to it. Over the past few days, she had become very limp, floppy, and lethargic since the increase, not to mention, her seizures became much more intense and frequent. Well, three strikes and you are out. I talked with her neurologist this evening and we agreed to take her off of it completely. If she is lethargic, crappy, AND still having seizures, then that is enough to say it's not working. So, Mira will wean the Diamox over the next few days and start Felbamate (Felbatol) on Monday. Felbamate has about as much of a chance as any of the others to help, so pray that this one works for her.
In the meantime, Sarah and I have planned a trip for months and we are leaving tomorrow, for Vegas! We have not had a vacation that didn't involve family, kids, or work since 2000, when we spent a week in Tokyo. It will be a short weekend trip, but it will be fun. Sarah's sister Aura is coming in from Illinois (with Truman - Addy will be staying in Illinois with Daddy Wario) to watch Eli and Mira. I cannot thank her enough for letting us get away for the weekend - hope she isn't pulling her hair out by the end of it!
1 comment:
That is such a fantastic picture of your little Mira. Thanks for sharing your daughter with us.
Leslie (& Jordan) Rowe
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