Guest guest Posted May 12, 2010 Report Share Posted May 12, 2010 Hi all, I have 5 yo daughter with partial complex seizures since 6 months old. She also diagnosed with vitamin B12 metabolism disorder, autism (PDD NOS), immune deficiency, peptic ulcer, hearing loss, developmental delays, apraxia. She is using single words for request, but cannot communicate well. I wish she can tell me what hurts and how. She failed 6 seizure medications: Phenobarbital, Trileptal, Kepra, Lamictal, Topomax, Zonegram. We also tried Homeopathy, naturopathy, DAN doctors. She is on Gluten, Casein, Soy free (GFCFSF) and ketogenic diet at CHOP since 11/2008 Sometimes I'm using Clonazepam to brake clusters. She is still having seizures often and unable to learn well. We have multiple therapies for her during the day, every day. I feel we run out of options and just giving up to control seizures. She is not surgery candidate and I don't want to use VNS because of her severe combined immune deficiency. What else we can try to help her? Should I just give up and let it go? It is so painful to see child straggling Thanks for any advice and support Quote Link to comment Share on other sites More sharing options...
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