So, my son is almost 2 1/2, and doesn't have a confirmed diagnosis of CP. A year ago his neurologist said it's probably mild CP, and all of his therapists agree. He is globally delayed and has many sensory processing issues, everyone says he is a puzzling case. Anyway, I just got a referral to a "top notch" neurologist, Dr. Steven Ashwal in Loma Linda, here in CA. I am hoping he will see what all of us see, and give a diagnosis. Chase will be 3 next June and his "Early Start" services will be stopped and he will be transferred to the school district. He needs a diagnosis in order to qualify for services through the state of CA. I know he will need more than what the school district can offer. I have done my research on CP and know in my heart that it is what has caused his delays. Has anyone else experienced a diagnosis later? Or was it right after birth? I'm just trying to do the best for my little man and want to be fully ready for this appointment in November.... Would love to hear your stories about CP diagnosis and your child. Thanks for your help :)
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Diagnosing CP...
- By Lovingourlife
- Posted October 15, 2009 at 12:26 pm · 7 replies
- In Advocacy for your child
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- By alskwirut
- Posted October 16, 2009 at 8:39 am
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Good for you for taking him to another doctor. My son was diagnosed at 6 months old because I fought and fought for him to have a formal diagnosis so I could get him services through NJ. He was diagnosed with PVL at 2 months old, so we knew there was a chance for him to have CP. Although we don't use state services yet, we have them if we need them. He ends his Early Intervention in July of next year and then we have him in the school system. I suppose I'm "lucky" that he was diagnosed early so I could start the long process of fighting for him. Our current battle is with the insurance covering hippotherapy and with trying to get him a chair for school and the bus.
Please let me know if there is anything I can do to help you and I wish you luck with your sweet Boy.
~Aimee
- By Lovingourlife
- Posted October 16, 2009 at 12:05 pm
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Thanks Aimee for your response! Have you started hippotherapy yet? I have been thinking about that for my son as well. And what is "PVL"?
I look forward to his upcoming experience in the school system, just nervous about being away from him. I'm so used to being there for every moment of therapy and every other moment of his life....That will be hard for me:( But I know it will be great for him!
Talk to you soon :)
~Leslie
- By AmyC
- Posted October 16, 2009 at 12:10 pm
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I am a mom to a 13 year old still without a diagnosis. She does get special education services based on her assesment not on a diagnosis. School services aren't based on a medical diagnosis, but rather the testing that they do. Based on those tests they will give a label - the most common early label is Early Childhood Developmental Delay there is also Speech and Lanuage Impaired, Cognative Impaired and a few more. The one label based on medical diagnosis is Other Wise Health Impaired, but will not determine what kind educational help the child might need.
I have an interesting view on the diagnosis of CP, Autism and ADD. That I will share in another post.
You may or may not be interested in looking at Syndromes Without A Name www.undiagnosed-usa.org
Amy
- By Lovingourlife
- Posted October 16, 2009 at 12:40 pm
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Thank you Amy,
I am always interested in learning different things and views on special needs. I am eager for my son to start in the school district next year, but I think he might need more than what they can offer....We will see. Thank you for your response and the information!
Leslie
- By cpmom2009
- Posted October 22, 2009 at 12:57 pm
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My daughter (now 4) has mild spastic diplegia. I keep a blog about her development, incuding our reaction to her diagnosis, EI, and transition to public school. If you'd like to read her story, her blog is here:
www.elenadoodle.blogspot.com
Her diagnosis is the second post, I think (you have to go back to the beginning).
Thank you for reading,
Amy
- By alskwirut
- Posted October 27, 2009 at 8:13 pm
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Hi Leslie,
Sorry it took me a minute to get back to you, you know how it is with a bossy kiddo ;-). We started Hippotherapy just about two months ago and what an AMAZING difference it's made in my Boy. He can sit up much better and now that he has better trunk and core control, the speech is just coming in leaps and bounds. We age out of EI in July so we are in the process of looking into getting him a wheelchair with great positioning and that's turning into another fun time with the insurance company. Not really them, the vendor we want the chair from. Sorry, didn't mean to go on a tangent.
PVL is periventricular leuko malacia. It's damage to the white matter in the brain where the ventricles are with the cerebral spinal fluid. This is what caused his CP. Damage to the motor neurons in this area.
And Elena's Blog is AWESOME. I read it often. Check it out.
~aimee
- By screen
- Posted October 30, 2009 at 7:04 am
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My daughter was diagnosed at 20 months old by an orthopedic dr. She seen a neurologist since birth but he was not the one to diagnose her which til this day I don't know why. So maybe an orthopedic dr can do the same for you. Good luck with everything! Stick to your gut feelings! Doctors don't know everything.
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