Jona - posted on 08/15/2013 ( no moms have responded yet )
Hi Mom's! I have a 3 1/2 year old little girl who has been tentatively diagnosed with Hypotonic Cerebral Palsy(non-spastic) as of April 2013. I could go on forever about everything that has happened in the past 3 years but I will keep it short and simple.
In Feb. 2013 we saw a neurologist (because she is 3 and not walking or talking) who ordered blood work- 5 different tests including a chromosomal microarray. All tests came back normal. He then ordered an MRI and an EMG. The MRI came back normal but the EMG came back showing muscle abnormalities of some kind. He then ordered an EKG and ECHO which both came back normal. We are set up to have a muscle biopsy at the end of this month but the Pediatric Surgeon said that It very well could show nothing. I feel so lost! The doctors are all baffled by her "situation" because all of the tests are coming back normal but there is something obviously wrong. Does anyone out there have any other ideas, suggestions or things that I should look into?? Other specialists etc.? We'll be seeing a Geneticist in March 2014. Any and all ideas would be great. My husband and I would love to hear from other families who are affected by CP or muscle abnormalities.
Another note about Izzy: She can walk with her little shopping cart freely and she can cruise along furniture perfectly fine. She has taken 8-10 steps by herself her in the last month but is still very weak. She also isn't talking. I would say her language is that of an 18 month old (she has 15-20 signs and can say about 10-15 words). She is seeing a PT, OT and SPH therapist at home and she is also seeing a PT, OT, and SPH therapists at preschool.