Updates
July 2000
Wow! It's been a long time since I've updated! Zach started having atonic(drop) sezs a few months ago. We had thought Zach was just having myoclonic sezs and was losing his balance as he walked and was falling down. But, when I called the neuro, he put him on Topamax(which made them worse) and on the pharmacy print out, I saw the words....Lennox Gastaut Syndrome! So, off to the web I came to research and found out that my baby was most likely progressing into LGS. So, we went to see the neuro a few weeks later and I asked him if he thought Zach still had IS and he said, "No!" I then went on to ask if he think he has.....we(neuro & I) said it together, "Lennox Gastaut Syndrome." I thought my world was caving in on me. How, after being told that Zach would most likely outgrow IS, could he have something so much worse? It is very hard to deal with and acccept. We all only wish for the best for our kids.
Dec. 28, 2000
Zachery has been seizure-free for 24 1/2 weeks now. He is just doing wonderfully and I am so proud. He is progressing developmentally everyday, instead of regressing as expected. Lamictal just seems to be our miracle drug. I know this may just be our calm before the storm, but it is a very nice calm!
Zach gets to start a special ed preschool next week. I believe he will benefit greatly from being around other kids his age. He will be receiving O/T for 60 minutes a month and Speech twice a week. He currently only makes alot of babbling noises and a few words that are recognizable if you listen, such as "mom", "dad", "eee"(eat), "moooo"(more), and "bi"(bite). Oh! I can't forget, he did say his first word with a real purpose last week and repeated it when asked what he said. LOL!! He said, "Pop." He had spotted a pop bottle and wanted it and was sure letting us know. When Tim asked me what he said, Zach looked at him and repeated it. We were both in tears and so excited. Of course, you know we *had to* reward him with some pop after that;0)
Zachery also has a bad sensory problem. He has to chew on any and everything. I feel that this is one of the major problems holding him back from doing more with his hands. This is one of the things that will be focused on in his therapies. They will also be working on getting him to self feed. He's slowly getting the hang of it.
If you are a parent of a child with Infantile Spasms, please never give up! I know it's not easy to deal with seeing your child seize and not be able to do anything. We have had our trials of many different meds, but I truly believe we've found the right combo for Zachery. He is currently only on Clonazepam and Lamictal. I sure hope we never see another seizure, but I am just enjoying this break we're getting anyhow:0)
Click here for newest update-2001
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