So Landon has been on Sabril for a few weeks now. Things seemed somewhat better at first, but as usual things are taking a turn back to the old. His seizures are getting long, and more intense. We are giving it a few more weeks to see how things go on it. We return to Philadelphia for the Ketogenic class, an EEG, and meeting with the doctor again. I have been pretty upset that we haven't had a break, and we are pushing a year since he started having seizures. I have been doing more research which can make things worse sometimes. I feel like i'm becoming somewhat paranoid, and much more emotional. The smallest things are making me cry...and I consider myself to have a pretty hard shell. I know I need to stay strong for him, but I fear the worst. Hopefully things start looking up for our family.
Hope all is well with everyone!
XOXO,
Heather
I saw your son's name and it made my heart sink. My son's name is also Landon. He is 11 months old and suffers from Infantile Spasms. No cause has ever been found for his IS. We have tried several medications and had a terrible experience with ACTH. Currently he is on Vigabatrin (Sabril) and has been since August. It helped at first, but then he went back to having seizures. He's also on Zonegran currently but it has not helped at all. We have a wonderful neurologist whom we love, but we are looking into some other options right now as well. I hope the Vigabatrin works for you. It has helped soooooo many children. I wish that it was working better for my Landon. If you want to talk my e-mail address is Phlpns413@aim.com
ReplyDeleteFeel free to e-mail me at anytime. Support from others is a must during something like this.
Hopefully things get better again. I know it helped Adysen but you know that it never stopped them.
ReplyDeletePhlpns413, I hope that they find something that will help your little one as well. I feel for both of you women. It isn't easy. Both of you can always email me stopshot14@hotmail.com
Sure, I'd love to talk with you. Send me your number via email babyreaganleigh@yahoo.com and I'll give you a call!
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