I just joined today. I’m on a Facebook group for parents of children with epilepsy and someone recommended this site. I’m all for finding as much support as I can…there’s NONE here where I live. My daughter is 9 and we’ve been dealing with this for just over a year. I’ve experienced a bit of hesitance where Anna is concerned…and it stung. She can’t help this and it’s not fair to her. *sigh* Oh well…their loss I say. The sad thing is…I can say that…it’s not so easy for her. Case in point: no one…not one child…came to her birthday party last weekend.
Anna has learning disabilities. expressive/receptive language disorder, and Mitral Regurgitation in addition to epilepsy. She currently has IEP’s for both the speech and LD. What a plateful for such a small girl! We deal with it as best we can, with our limited knowledge. One thing is certain…we are learning. The “we” I refer to is myself and my new husband. Anna’s biological dad (to whom I was married) doesn’t believe there’s anything wrong with her at all and tends to fight me on her treatments. *BIG SIGH* I refuse to back down and I personally do NOT believe there is a court in this nation that would argue with three neurologists, a neuropsychologist, and test results.
Anna takes Trileptal, 450mg 2x a day. We are going tomorrow for another sleep deprived EEG and then I have to battle the bloody insurance company to pay for her neuropsychologist’s visit and the scheduled testing she’s due to have next week. Geez…insurance companies do love to play with our lives and the lives of our children.
It is my hope that not only will I learn something from being here, but will at some point be able to help others along the way. As a teacher myself, I never stop learning but I also enjoy helping.
Karen Pothier, Demorest GA
PDF 
