Look what’s back?! His beautiful smile!
Eli has been seizure free for one whole week! He’s still not the Mr. Happy Boy he usually is, but I’ll take a few smiles and the occasional giggle over irritability and crankiness any day! It’s really interesting…He’s still on the high dose of ACTH yet he’s a totally different baby now that he’s no longer having the seizures. Leads me to believe it was the seizures causing his unpleasant behavior and not the steroids – or maybe now that the steroids are actually working the negative symptoms subside some? He does still have a very “swollen” face (known as moon face) but I think his chubby cheeks are adorable!
I am so thankful that the ACTH finally started to work, just when I was ready to give up. I have read so many heartbreaking stories where the search for the right medicine(s) is exhausting and never-ending. I thought that was the road we were heading down. I truly was starting to lose hope.
Eli still has to get through the weaning process so all of your continued prayers are appreciated. He’ll have another EEG at the end of this week or early next week. If the test shows normal activity has returned to the brain, we will start the wean off the ACTH. That should take about 3 weeks. I am not sure of the maintenance plan after that. Usually, children stay on an anti-seizure drug (there is a wide range of treatment protocols as to the length of time – depends on the neurologist I guess!).