by Elizabeth Adams
My daughter has been diagnosed with Intractable Partial Epilepsy. This is our only diagnosis despite the fact that we have had chronic hypotonia since she had her 3 hour long status epilepticus. She was born full term via C-Section and received a 10/10 Apgar score. The only thing that was off at birth was Genu-Recurvatum (she got stuck with her feet by her face and her knees were bent backwards - more common in breech babies)
We did mild therapy every time she was breast-fed for 2 weeks and she was pronounced "cured" at that point. We started experiencing what we first thought was "colic" shortly after we went home which progressed to obvious seizures which took until her 3 hour seizure (at 3 months) to diagnose. Now she is almost two, her seizures are fairly well controlled but we still have hypotonia with no "diagnosis". We have done every genetic & enzyme test the geneticist could think of with no answers.
Anyone have similar experience with this? We are working with various therapists but I'm starting to also see signs of SPD or autism-like responses (ie, fighting to not have her hands touched inside or made to touch anything else, not looking straight at something - especially faces, enjoying but not fully involved in her environment). HELP!