It Worked :>

I did another EEG last night after Britt went to bed and it looked much better. We went to see Fran Filloux today at 3:30 and told him I had not seen the left sided jerking in over a week and felt like the medication has helped. When he compared the EEGs he agreed and was very pleased it had worked so quickly. Protocol for this medication is to stay on the effective dose for 2 weeks after the seizures stop then start to slowly taper off the medicine. If the seizures come back we go up to the last dose that was effective and stay there for two weeks then start to ween off again. He said that there is a 50% chance of this happening. So since I estimated that I hadn't seen a seizure for over a week, he wants Coop to stay on the full dose for 5 more days before decreasing it. It will take almost a month before we are completely done with the shots. His bloodwork was normal and his blood pressure has stayed within the acceptable range for this type of medicine. Dr. Filloux said that Coop will slowly grow into his extra weight and chubby cheeks, he won't just loose it after stopping the medicine. But, if it worked that easily and chubbiness is the only side effect then I can't complain. I commented to the doctor that this was the first thing with Charlie that has been straight forward and he said "that's what I'm worried about." SO keep your fingers crossed that we are on the downhill.

And he also wants us to start decreasing his other seizure medicine (phenobarbital)!!!

Things are pretty busy around here but we are content. The seizures seem to have decreased in intensity and frequency with the ACTH shots. I'm going to do another EEG tonight so when he sees Dr. Filloux (neurology) tomorrow we can make some decisions. The original plan was to stay on the ACTH until the seizures were gone and then taper off slowly for 6 weeks. I don't think they are completely gone so he may want us to continue on the current dose or increase a little before we start coming down. I think it's been easier to give him the shots knowing that he is improving some. He no longer does the left sided jerking that we videoed but he still wakes up and startles where both hands jerk up a little then relax.

Britt has had a cold for a week and because Charlie's immune system is depressed he got it too. His cry sounds hoarse, stuffy nose and goopy eye and he wants to be held a lot. He isn't interested in doing his exercises or swallowing his tastes of baby food. I can't blame him with a sore throat. I am impressed that he is able to cough and keep the gunk out of his lungs so far. :) When we left the hospital that was one of my biggest concerns.

Before he got sick this week he was doing great in therapy. He was starting to lift his head while on his tummy and didn't hate bearing weight on his arms. Big improvement in my eyes!