Not much time and energy, but I feel remiss in not updating for so long. I know all our lives are fascinating, but you mostly want to know the latest with Jack. One week left of a very diminished dose of the ACTH (steroids). No spasms have returned! We are extremely pleased that it is working. Before the spasms, he was regressing day by day to the newborn state. He was, and is, on the phenobarbital and Keppra for generalized seizures, which together gave us a seemingly lazy, but easy kid. The steroids did for Jack what it does for pro baseballers. It made him irritable, angry, uncomfortable, hungry, and very, very fat. As we started to wean him off the steroids, he got really uncomfortable. His face has broken out and is itching him; he has heat rashes from being so warm due to the higher metabolism. Now as we are just rounding the corner to the lowest dose, he seems to sleep more soundly and spend more time awake but calm. Also cooing sometimes. He is learning how to be spoon fed. The ability to learn is something we take for granted, but seeing him recognize me and coo, or remember how to eat, is priceless.
Next step, we await the results of a DNA panel that will tell us if it is a chromosomal abnormality. We will also get a new EEG to make sure the infantile spams are gone for good. At the same time, another BAER test, to see if we get a normal result this time, unlike last time.
I'll write again soon about the rest of us, but that's Jack's new good stuff!
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