After receiving his first shot Jayen had one seizure the same day and one the day after. The medicine was not fully in his system so it was to be expected. From Saturday the 24th through Monday the 3rd he was seizure free. 10 days, that was so great. On the 4th he had a seizure so we increased his ACTH. This dose seemed to be working. At least for 7 more days. On the 11th he had another. The next day we saw the neurologist. He increased the ACTH again and started another med called Topamax. The ACTH seems to be working ok on the seizures. We have definitely seen a drastic decrease in seizures, but the flip side is not the greatest. Jayen is continuously uncomfortable. He is hungry 24/7. He is up every hour at night. HE IS A MONSTER!
We are still waiting to see if the Topamax helps at all, but after having another seizure on the 14th I am not very optimistic about a lot of things. My heart is breaking every time he makes a little twitch or any little movement. I'm so worried that since the seizures are occurring again that our chances of growing out of this are decreasing daily.
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