Paisley is doing so well now! She's been on the ACTH for just over a month and she is seizure free for OVER 4 WEEKS!!!! We couldn't be happier. We are still waiting for Babies Can't Wait to come do their evaluation of her but I think she's starting to catch up on everything by herself. She can sit for extended periods, rolls all over the place and is getting up on her knees and elbows! Thank you all so much for all of your prayers. We don't know for sure yet if the hypsarrhythmia has stopped but atleast the seizures are under control. We won't have another EEG until the beginning of December to find out just how effective the ACTH has been.
Paisley did have an unrelated trip to the doctor this week. I noticed her tugging on her ear on Monday so Tuesday morning we headed in the see the pediatrician. Luckily it wasn't an ear infection but she did have a foreign body in her ear. I can't believe at 8 months old she's already putting things in her ears! The doctor was able to flush it out though and Paisley is fine.
Next week, Oct. 11-17, is Infantile Spasm Awareness Week. http://www.infantilespasmsinfo.org/About-Infantile-Spasms.php This is a great website that tells about what exactly infantile spasms are and it has a video showing what the spasms look like. I think it's very important to get information out there because this is such a rare disease it often goes undiagnosed for an extended period.
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