Life with CP

A family's story living with cerebral palsy in Chicago

Life with CP - A family's story living with cerebral palsy in Chicago

Misdiagnosis?

Hello…. I haven’t written in a while- a trip to the neurologist has sent me over the edge, mentally. To give a brief history… a year ago…we saw almost every doctor that there was to see… a physiatrist told us that he had CP. Then our neurologist had Jacob take so many blood tests and they came back normal.
Last week, our visit completely devastated me. The neuro kept asking questions about his birth and pregnancy, etc. He tells me NOW, that with his weight and apgar scores being so good, and since there really was no “qualifying event” ….  he could not have CP. He then tells me that he is setting up more  tests for Jacob to see if it is genetic. I thought we took all of the blood tests that there are to take?  I’m so confused by this…. I feel lost.. devastated… and with the amount of time that doctors spend on us patients… I have so many questions that need answers. Why did we not explore this avenue when he first saw him? Did he not pay attention to his weight and apgar scores? Is there something else that I should know or look for? I’d be happy to do research… if I knew what I was dealing with.
I spent a few evenings looking at possibilities and that just depressed me more.  After dropping this bomb on us, we haven’t heard from the doctor in 5 days to set up these blood tests. Sigh…….
If it is not CP and it happens to be genetic… then we have to see a geneticist to evaluate what our chances are for the next baby.  I guess there is no reason to get so upset just yet…… I’ll keep posted.

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