Please excuse all spelling and grammatical mistakes, my mom first language is French, but she loves to express herself in English.....

Sunday, January 1, 2012

My seizures

I started to have seizures for the first time two years ago in January 2010. My mom and I were so happy and proud, I was a Rett without seizures.....we had no ideas actually what seizures were. But never to late, in December 2009 just for Christmas time I got something like the swine flue! Fever, cold symptoms, and more high fever , my mom took me to the doctor and with some antibiotics I felt better very fast.....until two weeks later January 2010 when I got my first ever seizure waking up, I was with my dad. 
He called my mom right away, and he told her that I looked strange, that my eyes were wide open, I was shaking and felt asleep again and again with some of those weird episodes in between...?

Welcome to seizures world! I soon was having seizures one and off in the morning just when I wake up, shaking one's and then gazing one's in the afternoon, always very close to my nap or awakening time.The doctor said that it seems likes I was having seizures and we scheduled a EEG. This was not necessary, I didn't get seizures during the EEG, but the physician that day was wondering what was going on when I was holding my breath....!!!! My mom and my pediatrician didn't want to start me on med, you have to know that I had never taken any med yet, I was healthy and meds were scary. They started me on vitamins B6 one a day, it worked really well, I stopped having seizures for 6 months. Then we had to go to two B6 pills, until 6 months later when my seizures came back. You are not suppose to play with B6 it can be harmful, so we had to try the meds and my mom was very anxious at the idea...

 In January 2011 we tried Keppra, it was the one without too much risk...but it made me so druggy, I was not holding my balance well, I was looking drugged...very drugged. I was not the same person anymore. My mom took me off of those after three days. So we tried Lamotrigine or " Lamical ", but this one was maybe going to give me such a rash that I can be forever disfigured with a horrible red marks on my beautiful face..? I am not sure I minded all of this but my mom did, and she was like a good mother watching for any sign...For the details, you know that us Rett girl, get saliva rash very easily on the face, we can also react to some food, so of course I has a rash, and she took me to the doctor to be check every two days.  See next blog Seizures #2 

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