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15 month old with new CP diagnosis

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Old 06-16-2007, 07:57 PM   #1
Join Date: Jun 2007
Location: Western NY, USA
Posts: 2
mama2eight HB User
15 month old with new CP diagnosis

Hi. I am in the process of adopting a 15 month old little boy. He came home at 2 months of age. He was exposed to a lot of drugs inutero and had high tone in his legs when he came to us. The ped there said that he'd "grow out of it" it was from the drugs. Well. I have two girls with SEVERE CP so I knew that he wasn't Growing out of it as they said. His tone has effected him quite a bit. He didn't sit up until 9 months and that was when we placed him there. He would fall over and roll away! He couldn't sit himself up on his own. When he was about 11 months old he started pulling himself up to the furniture, real crawling instead of combat crawling and walking along the furniture so they released him from OT, and PT. Well, he's now 15 months and hasn't progressed from there. He still walks along the furniture and if he's pushing a "walking toy" he holds it and walks sideways all over.(like they do along the furniture..) His ankles are very stiff and his right hand is often fisted or he holds things with the outside of his hand not the palm. His right eye is often "off center" and he has trouble moving food to the back of his mouth if its soft or liquid. He's preferred food he could chew since he was 8 months old. He has been on table foods..Drinking from a sippy cup with the valve in it is very difficult for him and he gets frustrated and throws it. So we went back to a bottle. The neurologist that saw him in December said "mild CP' but we don't need to do an MRI.. not be worth the risk of anesthetic. She said continue to do therapy..well he tested out of therapy because he could do JUST enough ..only 20% delay when they need 25% delay in two areas..or 33% in one. Do you think it would be worth the MRI to get a more definitive diagnosis?? Oh, EI is also sending us to a developmental pediatrician because they are concerned that he hasn't really progressed since they dropped services to 1 x a month consults either. He also has a lot of sensory seeking behaviors. What should I do??? As someone said..mild CP is a hard diagnosis because to the casual eye he looks ..normal just a little slow to walk etc..even the pediatrician keeps saying..wait, wait..I can't wait..I want to finalize but I want him getting services before so they can continue after the finalization..

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Old 06-16-2007, 09:00 PM   #2
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Join Date: Feb 2007
Location: Gold Coast
Posts: 153
KarimsMUM HB User
Re: 15 month old with new CP diagnosis

My son did not have an mri either as the paed said it was unneccessary to put him under. But we already knew from an ultrasound that he had had a brain bleed. I would push for the physio, even if you have to fund it yourself. Try to get them to give you excercises at home to do.
The turning eye would concern me. My son had that too and it was picked up by the paed who said a lot of cp kids have that. Well when we went to the eye specialist and checked it out, it turned out that he had moderate far sightedness in one eye. So we were able to correct that with glasses.
But yes you are right, with mild cp it is difficult as a lot of people will look and say "oh but he looks fine to me theres nothing wrong." Because you already have had experience with cp just trust your gut, it will rarely lead you astray.
Welcome to the boards.

Old 07-13-2007, 11:44 AM   #3
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Join Date: Jul 2005
Location: Alabama, USA
Posts: 734
sobannon HB User
Re: 15 month old with new CP diagnosis

Minus the solid food eating issues, you could almost be talking about my son regarding the physical issues. My son however, does not pull up or walk independently (with push toys or otherwise). My son had a sedated MRI which showed periventricular leukomalacia. He has been diagnosed with mild CP. He is in EI and going through PT/OT/Vision therapy and also is having PT outpatient through the local children's hospital. He has seen a developmental pediatrician who went over things head to toe. Do I think an MRI is necessary, not really. Unless it is going to interfere with his benefits or there is a question of a progressive condition. Where are you located? Your therapy and progression of therapy sound very similar to what it is here.


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