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Wednesday, October 21, 2009

CHM...(childrens Hospital of Michigan)

I am starting to think I live here. Part time of course. I really hope that Kadyn doesn't go through the seizures that he has had in the past again. Maybe we can go another five months. The Neurologist increased his Zonegran by 25mg, so in total that is 2.5ml's Keppra, 4ml's Trileptal 60mg lamictal and 75mg zonegran. Anyone else think this is too much for a 23lb 2 year old? So when I go to see his Neurologist I think I am going to ask her to take him off the Keppra as, that has never helped and is not good for children at all. I looked it up and it is an seizure medication for adults, not children. I am hoping to get him off that medication. I am also hoping that this seizure is just because he has grown a lot.
I also talked to the dietitian today. She said that she is satisfied with Kadyn just drinking pedisure until he learns how to eat. She said that him getting 900-1400 calories a day is more than enough, but since he isn't gaining weight like he should that we should just increase it. Try to atleast. Which with Kadyn, that will be easssy!
Kadyn just woke up so I am going to get him out of his crib. I know they won't let me walk around with him incase he does have a seizure, so I'll just lay him next to me.
Gotta love him!

2 comments:

Tara said...

Actually they are using Keppra more and more in children and finding that it helps better then some of the other harsh ones. Like phenobarbital, depecote, tegretol. Michelle was on it and we were able to take her off of all medications thanks to Keppra. She has been seizure free for almost 1 year!

Andrea A.K.A. AndreaJunelle said...

Hello there, I came across your blog when looking through a friend of mine's "favorite blogs" :)

I have an 18mo/old daughter, Rowan Elizabeth who has Hydrocephalus, Cerebral Palsy, and Epilepsy. She is ALSO on Keppra for Epilepsy - no other drugs added WITH it like your son, but she IS on Keppra.. and even with her being on it, she has continued to take seizures as well.. They are NOT grandmal anymore, and they are not as close together as they once were, but they DO still come (approx. every 4 months or so..)

Keep the posts comming though, your blog is extremely interesting!

I have a blog here on blogger for a new Hydro support group I'm trying to get together here in SouthwesternPA -- my daughter's PERSONAL blog where I've been tracking her progress is:
http://andreajunelleb.wordpress.com/

I'd LOVE to keep in touch!
I'll check back soon! xoxo
Andrea & family :)

**Prayers from my family to yours**