Earlier this week we took Jack to his neurologist for a 4 month follow up. Over the past few months Jack's been weaned from 3 seizure meds to just ONE. Greatly improved his overall mood, behavior, eating, growing, learning, and no seizures to speak of!! He's now taking Keppra twice a day with no nasty side effects and no seizures. Let's hope it stays this way for a long, long time!
Jack was such a big kid at the appointment. He cooperated and interacted with the nurses and dr. He did great during the wait (not his strongest point). Morgan on the other hand was quite miserable and I made a mental note, come Hell or high water she's not going along to future appointments if I can help it. She was very concerned there were going to be needles involved. Not for Jack, but for her! She kept trying to espcape and kicked my shins so hard -- and my arms ached the next day from trying to hold her on my lap all the while trying to listen and talk to the neurologist.
Between Morgan's yelps and cries I was able to explain Jack's up and down behaviors to the neuro. Most often it's related to his bowel habits and being backed up. There are other times though when his behaviors and obsessions seem to come out of left field and we're left scratching our heads. What the neuro suggested is weaning Jack off of Risperdal (the medication he's on for behavior issues). We really haven't seen a difference relating to the medication. It's a pretty "serious" med and I can't say one way or the other if his good days/weeks are because of the med. So, we will see in a few weeks what he's like off of the medication. Weaning can cause withdrawal and worsening behaviors so we are going very slowly.
The neurologist only wants to see us back in 6 months! That's a milestone in itself! Keep us in your thoughts and prayers for a seizure free, smooth behavior-filled summer.
PS - see the BIG KIDDOS in the picture? Jack's in a big people chair and Morgan's in Jack's chair. They thought it was great to have lunch and be such big kids :) Morgan also likes to play peek a boo as you take her picture. So if you see her covering her eyes in recent pictures that's what she's doing!
Congratulations on the drop in seizure meds and no recent seizures! That is SUCH good news!!
ReplyDeleteIt is great to hear that Jack is doing so well that his meds can be reduced. I will pray that all goes smoothly as you wean him of the other med. I will pray, too, for Keppra to work a long, long time and for seizure free days ahead. Those little cuties look so sweet in the big people chairs.
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