This blog is about Emmalin's struggles and triumphs living with the CDKL5 gene deficiency, early infantile epileptic encephalopathy. We will also blog a little about what challenges and joys we have had as her parents. God is SO good and we feel so blessed that He chose us to be Emmalin's parents! This is our story...
Emmalin Age: 7.5
Sunday, December 11, 2011
Hard Couple of Days With Seizures
This weekend has been great having my mom and sister here, but Emmalin has had a couple of REALLY tough (at least tough for us) seizure days (really afternoon/eveningish) the past couple of days. I think she had around 6 or 7 "hard ones" within 11 hours yesterday and she had around 4 hard "ones" the day before that (right now, that is a lot for Emmalin). And to top it all off, Emmalin started a "new" seizure type last night. Unfortunately that happens with CDKL5 (new seizure types will just show up randomly). I was hoping not to have to change any medications around until after the intensive was over, but I don't think that's possible now. I will definitely be calling Dr. Weisenberg on Monday and figuring out what we need to increase next....sigh. I HATE SEIZURES!!!
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