Update re: Keppra Users

eav2c

Hey Ladies. Just wanted to update on our neurologist visit last Tuesday. The keppra was clearly not enough since he was having 3 seizures a week and then the week before had 6 seizures. He was on a relatively high dose for his age/weight too. Needless to say, his neurologist started him on Zonisamide in addition to the keppra. He is on 1ml and will be upped to 1.5ml on November 13th.

I'm not a huge fan of this medicine. He is not interested in much, sleeping more than usual, upset tummy. I am hopeful that the symptoms will settle relatively quickly. I hate seeing him so inactive and uninterested. I worry for his development and it is on my mind all the time. I've applied to get him into the Child Development Center at our local college. I actually studied with the program and have great things to say about it. I just feel like an extra eye on him is necessary to help meet milestones. We are also thinking about contacting our states EI program. I'm not trying to jump the gun but I just feel like things are so off. Maybe I'm just paranoid, maybe it's the medicines... maybe it's something else or perhaps it is a little bit of everything.

So, now we sit and wait and see if this is the right combo of medicines. I do not feel too enthused because I do not want to get my hopes up. We will touch base with the neurologist in a month. Fingers crossed.

Thanks for the help and I hope you all are well. 

toddandleah

We used EI for different reasons, but I think it is a great idea to get him into the program now.  There can be no damage from doing so, and the opportunity for specialists to work with him on developmental skills in a play environment can show you some great things to try on your own, too.  It is very empowering!  I wish you the best.  :-)

Florak8

I agree about EI. It's great to have a developmental "watchdog" to make sure he is on track. Sounds like you are doing all the right things.

Don't lose hope because he is tired this week. Sometimes there is an adjustment period. When we brought DS home after his first being prescribed phenobarbitol, it scared me because he was like a wet noodle. That went away as his body adjusted.

You are doing a great job, mama!!