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Old 09-29-2009, 07:59 PM   #1
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Why won't doc give CP diagnosis? (12 mnth old)

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.

 
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Old 10-01-2009, 08:21 AM   #2
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Re: Why won't doc give CP diagnosis? (12 mnth old)

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.

 
Old 10-01-2009, 10:03 PM   #3
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Re: Why won't doc give CP diagnosis? (12 mnth old)

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?

 
Old 10-02-2009, 08:57 AM   #4
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Re: Why won't doc give CP diagnosis? (12 mnth old)

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

 
Old 10-13-2009, 07:25 AM   #5
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Re: Why won't doc give CP diagnosis? (12 mnth old)

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.

 
Old 11-05-2009, 05:56 PM   #6
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Re: Why won't doc give CP diagnosis? (12 mnth old)

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

 
Old 11-07-2009, 07:14 AM   #7
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Re: Why won't doc give CP diagnosis? (12 mnth old)

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.

 
Old 01-28-2010, 09:48 AM   #8
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Re: Why won't doc give CP diagnosis? (12 mnth old)

We didn't get the "CP" diagnosis until my daughter was almost 3, despite PT since she was 3 months old. My daughter was not sitting at your son's age, so Yea for that! It seems like it takes forever sometimes, for them to roll over, etc. My daughter didn't drink from a straw until she was 4. Keep up with the therapy and this board. Just because there is no label doesn't mean you can get help from other parents, etc. Try to find a parent support group for special needs kids in your area. It will keep you sane! Let me know if I can help.

 
Old 04-21-2010, 01:52 PM   #9
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Re: Why won't doc give CP diagnosis? (12 mnth old)

My son is 10 months old. He also has not been given a clear diagnosis. He also has a seizure disorder. He was 3 months premature. I am not certain why they are like that. We visit 5 doctors regularly and have an OT come out once a week. We also spend lots of time with excercises. I have heard of kids who are diagnosed with CP at 9 months. When he let the NICU we were told that due to his brain damage he had a 70% chance of developing CP, yet still are unable to have a confirmed diag.

 
Old 04-22-2010, 08:19 AM   #10
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Re: Why won't doc give CP diagnosis? (12 mnth old)

My daughter was 8 weeks premature. I had her with me at my doctor's appt. one day, and my psychiatrist is the one who said she had CP. He said it was just a catch phrase for the neurological symptoms and problems these kids have. My daughter is very healthy, so we didn't see a lot of doctors. We had OT/PT when she was little, and some speech therapy, went to ECI and graduated from high school in 2007, at the age of 21. It takes years to see progress sometimes, and then one day you notice they are doing something they didn't do before. She first was able to use a straw when she was 4. She waved her hand for "yes" for a long time, until we made her try to use a sound or word. The more we expected of her and the more we made her do on her own, the better she was/is. She is now in a group home and is speaking in some sentences, and can certainly let everyone know what she wants/needs. I don't know why your doctor has "diagnosed" your child with CP at this age. One of the best tools I found was a local support group for parents of kids who had special needs. Try to find one if you can. Good luck.

 
Old 05-31-2010, 01:08 PM   #11
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Re: Why won't doc give CP diagnosis? (12 mnth old)

Hi,
My son was diagnosed with CP at 14 mths old. He was exacly the same (from what you've written) My advice is this, No doctor can give a CP diagnosis without an MRI. The MRI must show damage or injury to the brain. If they have a reason why he may have had an injury or damage its easier to get an MRI (bear in mind in am in the UK, not sure where you are),Reasons include Difficult birth? Premeture brith? Head injury before two or problems in pregnancy? But lots of cases of CP have no reason for the damage to the brain. Have you had an MRI? Without an abnormal MRI its not CP, which is frustrating - some of my friends have children presenting with CP but normal MRI's and they don't know what it is. Hope this is helpful? Best thing is to just keep asking and pushing.

 
Old 05-31-2010, 05:00 PM   #12
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Re: Why won't doc give CP diagnosis? (12 mnth old)

Quote:
Originally Posted by Basswife View Post
The MRI must show damage or injury to the brain. Without an abnormal MRI its not CP, which is frustrating - some of my friends have children presenting with CP but normal MRI's and they don't know what it is. Hope this is helpful? Best thing is to just keep asking and pushing.

Hi Basswife, I don't mean to contradict you but your statement isn't totally correct. My daughter had a normal MRI, because of this she's also been tested for every other possible cause of her CP, all tests came back clear. I have learnt that about 9% of kids with CP have a normal MRI, my daughter falls into that catagory. Her official diagnosis is Quadraplegic Cerebral Palsy Level 4.

Below is a copy of some information I was given.


Magnetic resonance imaging (MRI) scans are often ordered when the physician suspects that the child has cerebral palsy. These tests may provide evidence of hydrocephalus (an abnormal accumulation of fluid in the cerebral ventricles), and they may be used to exclude other causes of motor problems. These scans do not prove whether a child has a cerebral palsy; nor do they predict how a specific child will function as she grows. Thus, children with normal scans may have severe cerebral palsy, and children with clearly abnormal scans occasionally appear totally normal or have only mild physical evidence of cerebral palsy. As a group, though, children with cerebral palsy do have brain scars, cysts, and other changes which show up on scans more frequently than in normal children. Therefore, when a scar is seen on a CT scan of the brain of a child whose physical examination suggests he may have cerebral palsy, the scar is one more piece of evidence indicating that the child is likely to have motor problems in the future.

 
Old 06-01-2010, 01:01 AM   #13
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Re: Why won't doc give CP diagnosis? (12 mnth old)

Looking at where you are from, we are in the Uk, is it then that advice and information is different depending on where you are? I am asking as a good friend of mine has a daughter who presents with athatoid CP but has no abnormalities on her MRI. Both she and I were told by doctors in the Uk that they could not diagnose CP without the abnormal MRI. How did you get your diagnosis? It seems some doctors are so reluctant to give a name to it without hard proof over here. Did it take you a long time to get the diagnosis? Thank you for the info though, it helps a parent when they can talk to a doctor about other peoples experiences and come with other information. Thanks x x

 
Old 06-02-2010, 08:21 AM   #14
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Re: Why won't doc give CP diagnosis? (12 mnth old)

My daughter is 25 years old, and has never had an MRI. Cerebral palsy is a term used as a catch phrase here. An EEG showed my daughter had damage to the optical center of her brain, affecting her vision, which explained her farsighted vision at age 4 months. It improved over time.
This condition was caused by a lack of oxygen to the brain. Again, I don't know that calling it one thing or another is that important, but I've had longer to deal with it. Therapy is your best tool - OT, PT and speech - and lots of love and patience - and play. My daughter still loves to roll around on the floor and play.

 
Old 06-04-2010, 05:36 AM   #15
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Re: Why won't doc give CP diagnosis? (12 mnth old)

My son now has a formal diagnosis of CP. When I asked the doctor if he has a confirmed diagnosis she said that yes, his MRI shows that. So I have to conclude that you have to have visible brain damage for an early diagnosis. Idiopatic disability determination must be a difficult thing for parents to go through. I know that without his diagnosis the programs available to him now would not be. Seeing 6 regular doctors and having all the tests ran that he has to have done for monitering is quite expensive. We are able to have 2 secondary insurances at no cost to our family. God has been so good to us through all of this. I pray that you too will find relief.

 
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