shandy67
09-29-2009, 11:59 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.
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.
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nwmom
10-01-2009, 12:21 PM
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
10-02-2009, 02:03 AM
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, 12:57 PM
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
nwmom
annie777
10-13-2009, 11:25 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.
megwislar
11-05-2009, 09:56 PM
Professionals are understandably reluctrant to give the diagnosis of CP.... ESPECIALLY when the child has a mild form.
My advice (take it or leave it) is to be an advocate for your child and get him all the therapy that you can through the Early Childhood Intervention Program as well as asking his pediatricain to write a prescriptin for PT and OT and explore whether your medical insurance will cover it. At this point focus less on a diagnosis and more on getting him therapies he needs. An official diagnosis will be necesary and helpful to him in the future.
Try not to worry about the diagnosis but your hook to get therpies covered will be documenting the delays i.e. his gross motor skills are 33% behind..etc...Find ou the criteria.
My daughter was not crawling or sitting steadily at all by age one but eventually did get a CP diagnosis at 16 months. She did not walk to almost 3 despite lots and lots of therapy, braces etc. She is completely ambuatory now at 14 years old but has had a lot of PT, OT and surgery. Her gait is pretty good...not very abnormal.. Team sports are out of the question but she is a good swimmer and can go on short, easy hikes with us. Her CP does not interfere with her academics or social life. Yikes...she even had a boyfriend who had no idea...???
Good Luck and Best Wishes
My advice (take it or leave it) is to be an advocate for your child and get him all the therapy that you can through the Early Childhood Intervention Program as well as asking his pediatricain to write a prescriptin for PT and OT and explore whether your medical insurance will cover it. At this point focus less on a diagnosis and more on getting him therapies he needs. An official diagnosis will be necesary and helpful to him in the future.
Try not to worry about the diagnosis but your hook to get therpies covered will be documenting the delays i.e. his gross motor skills are 33% behind..etc...Find ou the criteria.
My daughter was not crawling or sitting steadily at all by age one but eventually did get a CP diagnosis at 16 months. She did not walk to almost 3 despite lots and lots of therapy, braces etc. She is completely ambuatory now at 14 years old but has had a lot of PT, OT and surgery. Her gait is pretty good...not very abnormal.. Team sports are out of the question but she is a good swimmer and can go on short, easy hikes with us. Her CP does not interfere with her academics or social life. Yikes...she even had a boyfriend who had no idea...???
Good Luck and Best Wishes
ladybaker
11-07-2009, 11:14 AM
Hi there Shandy, I know it is very frustrating. My D. now 8yrs old, was not diagnosed until 18 months also. It really is not worth the risk to mis-diagnose, I mean that for your child not the dr's. Just be patient and therapy, therapy therapy.