First Grand Mal Seizure
Forgot to mention this on the blog (for the record) that Rachel suffered her first Grand Mal seizure on Sunday, February 6th 2011. It started off with her spinning our container of flour repeatedly after being asked to put it down (or it will spill) and she could not snap out of it. She slowly leaned back towards the kitchen counter and I grabbed her and laid her on the ground. She then started convulsing for about 2 minutes.
No diastat was used. No 911.
She woke up later on with a screaming headache and was irritable beyond belief. By the end of the day she was better (she slept most of the day away).
Read MoreFriday Night
I feel so cool blogging on a Friday night. :)
I took Rachel to her monthly girl scout meeting tonight and she had a good time. It was hard to watch her try and weave a bracelet (to raise $$ for Juvenile Diabetes) because she can’t see and has a hard time with mental processing activities that require sight. I promised her that I would finish the bracelet AND she could buy it off of me towards Juv. Diabetes. Such a good kid.
She is on day 3 of the lamictal. She is definitely more alert now that the risperdal is totally out of her system and her appetite is MUCH lower. I wouldn’t say that she is totally under control (behaviorally) but I think even the baby dose of lamictal (25mg for the first two weeks) is helping somewhat. She hasn’t been in school since Monday but I think she will go back next week.
There is a possibility that the Juvenile Batten Disease drug trial – the first one ever – will be starting soon. There has been talk of it as long as I’ve know about Batten Disease so I’m holding onto a shred hope. Hope, even if only a shred, is a good thing.
The drug trial won’t be for a cure, it it to test out the safety of using Cellcept (Mycophenolate) on JNCL kids. Cellcept has shown that it can slow down the effects of the disease on mice that have been genetically altered to have JNCL (Juvenile Batten Disease). (jist of JNCL and cellcept usage in knockout mice)
Featured Picture: That’s me (Kat), Rachel, Julie and Auntie Jacquie. A park ranger took our picture on Peddock’s Island… (wiki on Peddocks)
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TeamRachel aka mrskatvon is both a website to gain public awareness of Juvenile Batten Disease (which affects my oldest daughter) as well as a journal to remember the events in our lives.
Rachel was diagnosed with Batten Disease in July 2009 and while we knew something was "not right" we had no idea that such a nightmarish disease existed. There are dozens of nasty, orphan disease which affect people both very young and old.
Aside from dealing with the changes of Batten Disease in my daughter, Rachel, I have tasked myself with making life memorable for all of my children to make sure that (at least) 3 of them grow up to be as well adjusted and happy as possible.
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