World meet Abigail .... Abigail meet the world. Pictures later but for now background info.
Abigail is an energentic, happy, 3 year old. She never meets strangers....just new friends. She love everyone and everything.
Abigail has Idiopathic West Syndrome. Its an extremely rare form of Epilepsy. I know your thinking Grand Mal or Petite Mal seizures but the type she has is labeled as Myclonic....or partial seizures. She has 8 to 20 episodes per day. She was diagnosed at 4 months old and is now 3.5 years old. The seizures cause developmental delays and are very detrimental to the development of any infants and toddlers who have them. Abigail is about 9 to 12 months delayed in her cognative skills and has minor fine motor skill delays. Her epilepsy is drug resistant which is often the case in 40% of children with her diagnosis. We have tried every availiable drug on the market that can be used for children. None have worked. We currently have her on Vigabatrin which we procrue from Canada and this softens the effect of the siezures on her day to day activities.
We are out of options for her drug wise and are now going to start her on the Ketogenic Diet. This will start on January 5th 2009.
More info to follow. We have a month to get her ready and additional baseline medical tests to have run.
3 comments:
Hi Abigail (and Abigail's mom) :) I just found your blog today and wanted to wish you all the best. My daughter will be turning 3 at the end of this month and she started the keto diet at the end of October. She's still having seizures, but she is doing better than before, so we're keeping at it! Have you joined the Yahoo keto group? It's a great resource for support and information. Stop by my blog for a visit; my e-mail address is on the "About" page if you want to contact me.
fawnahareo.com
Oops! I just realized that should have said Abigail's dad! I hadn't read all the posts yet and I see so many more momblogs than dads blogging. Silly assumption...
Thanks! I will check out your blog it looks very nice. I will check out the yahoo keto group this evening! Thanks for the tip!
No biggy on not realizing it was dad posting, I have noticed over the years that it does tend to be the mom's blogging alot more than dads.
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