Why won't doc give CP diagnosis? (12 mnth old) - Cerebral Palsy Message Board

shandy67 · 09-29-2009, 08:59 PM

My 12 month old son has been seen by 2 separate neurologists now, and neither one will give a diagnosis beyond reflexive hypertonia. They say he's too young, it's too early to tell. His PT says she really thinks he has CP, and from reading through multiple posts here, his symptoms are identical to some children being diagnosed at his age or younger.

After 6 weeks of PT and me doing up to 1 1/2 with him p/day, he's just in the last few days managed to crawl. He still can't roll over, hold his bottle, pull to stand, cruise, etc. Actually all he can do is sit (quite steadily), get in and out of crawling, crawl and kneel. His fine motor skills also have delays, can't put a block into a bucket, for eg. He's very stiff, both arms and legs. He also has bad reflux problems, and tremors, which aren't seizures as he's had an EEG.

I've read these symptoms over and over again when researching online and in this message board. I'm just wondering if any of you have any thoughts on why they don't yet want to label his problem as CP (which I understand is an umbrella term encompassing a large group of conditions to varying degrees)?
I was thinking it was because I had an uneventful pregnancy and birth, but it seems that many of you with little ones with CP did also.

Confused, and looking for a name so I can get some support, come to terms with his condition, and move on from here. Thanks.

nwmom · 10-01-2009, 09:21 AM

Are you going to a clinic that deals with CP alot? If not, can you go get another opinion at a place where maybe the doctors know more about cerebral palsey? Noah was about a year and four months before they told us he had CP.

shandy67 · 10-01-2009, 11:03 PM

So far we've seen the neurologist with Kaiser (our health care provider), and a neurologist who works for the state and allowed us to receive the state run PT services. Both of them seemed very knowledgeable, but neither committed to an actual CP diagnosis. I would assume latter would see CP cases often. Was your son seeing doctors for long before they gave you a diagnosis?

nwmom · 10-02-2009, 09:57 AM

Yes--he was part of a follow-up clinic that sees every premature child from birth to 3 years--they were going about once every 3 months at the time, I believe. The home PT was the one who told us to tell these doctors about this above-normal muscle tone in his legs. Now they have PT's who are working with the doctors in the NICU's and in the follow-up clinics. At the time, they didn't have them there. It seemed to me that the PT's knew more by working with the kids than the doctors did, but that's just my amateur observation. Best of luck to you!
nwmom

annie777 · 10-13-2009, 08:25 AM

Our doctors made us wait until 18 months adjusted age, in our case 21 months old before an official diagnosis was given. The doctors had said the words cerebral palsy to us so we knew what we were dealing with but would not make it "official" until then.