Your experienced opinions?

Here parents of children with Cerebral Palsy can post questions about caring for their child and get advice on special needs and care.

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Joined: Tue Jun 26, 2012 10:39 am

Your experienced opinions?

Postby gwennyc » Tue Jun 26, 2012 11:04 am

Hi all:

I'm living in the not-so-fabulous United States health care non-system, so I'm not in a position to get definitive testing right now to confirm a diagnosis. Does this sound like CP to you all? Degenerative disorders and metabolic disorders have been ruled out.

My son is 3. He is hypotonic since birth, more severely so in the upper body than lower. He has occasional tremors, although they have lessened as he has gotten older. Tremors are more apparent when he is concentrating very hard or experiencing strong emotions. He had such poor oral motor as a baby that he could not latch even with lactation consultant help, and required feeding therapy to transition to solid food. He still cannot manage some textures, and continues to have some drooling. He has had intensive speech therapy for two years already, but still is very difficult to understand, speaks in a slurred way and seems to need to really concentrate to force the words out. He has sensory processing problems, particularly underresponsive tactile sense and if you've ever done the sensory assessment battery, in the vestibular and proprioceptive categories. He is able to walk well, although his gait is a bit awkward and he tends to wave his arms in the air for balance as he picks up speed. He has severely delayed fine motor skills. He is emotionally expressive and cognitively normal.

Just to muddy the waters, DH has a hereditary tremor, but the one in his family usually only manifests at puberty. I did fall badly (five-point landing, all four limbs and the belly) at 38 weeks pregnant, but the hospital did not find any physical injury to the baby at the time.

Fortunately, we are able to get key services based on symptoms alone in New York City without definitive diagnosis, but I'd love to know exactly what we're working with. Any insights greatly appreciated.