Can Kids Be Wrongly Diagnosed With Cerebral Palsy? Yes, It Turns Out

There was a mind-blowing segment on the Today Show the other day about twins, Noah and Alexis Beery, who were wrongly diagnosed with cerebral palsy. (Note, the narrator alludes to it as an “illness,” which it’s not—it’s a condition.) The twins had atypical baby behavior: they cried a lot, refused to nap, had low muscle tone and couldn’t crawl or sit up. Noah got an MRI at two years old; brain damage was found. Both he and his sister, Alexis, were diagnosed with CP. Their condition kept getting worse.

But their parents, Retta and Joe, suspected it wasn’t CP; Retta spent years researching her children’s symptoms. Then she saw a Los Angeles Times article about dopa-responsive dystonia, a treatable genetic disorder often mistaken for CP. Brains that lack dopamine can’t transfer messages between nerve endings, so it becomes hard to convert thought into action. People with dopa responsive dystonia might be able to walk for a few hours in the morning, for instance, but as the day progresses, they lose strength and become more impaired.

The disorder is treatable with medication. Alexis responded immediately and miraculously to it. “We had a daughter who was really incapable of doing anything herself. And within 24 hours of the first dose, it was almost like she was reborn,” Joe Beery said on the Today Show (this is when I started bawling). When Noah began showing the same symptoms, he was also given the medication and soon after, his symptoms also disappeared. Alexis and Noah are now healthy, active, “typical” teens—that’s them above—who were featured on a Discovery Channel Show called Mystery Diagnosis. When a young boy in a wheelchair saw the show, he told his mother about it. His life, too, was transformed.

These stories are fascinating. If you have a child with cerebral palsy, as I do, they might make you wistful. While I do not mourn my son’s CP and adore every inch of who he is, if it were possible to make it all go away with a pill, of course I would.

Dr. Nancy Snyderman pointed out in the segment that most kids are accurately diagnosed with CP. But still, raising awareness about dopa-responsive dystonia could help other kids avoid a misdiagnosis.

And one other thing? Mommy intuition can’t be beat.


Related posts from my other blog:

Hello, world, my child is not a tragedy

On convincing people that, yes, your child with special needs is content

How I made peace with having a kid who has special needs


Photo/K.C. Alfred for The Houston Chronicle

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  1. by Richard Rende

    On October 28, 2011 at 3:36 pm

    Ellen, it’s Richard from Red-Hot Parenting – this is such an important post with so much good information. Thank you for sharing it with us.

  2. by Forex

    On November 17, 2011 at 7:18 am

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  3. by Milo

    On January 30, 2013 at 8:50 am

    How terrifying is it that the difference between a lifetime of care or independence is now in the hands of the medical profession?

    Our son who at 2.5 years still had reflux with no cause. As he got older we were told possibly had Global Developmental Delay, on a bad day could be Autism, another day Dyspraxia and we definitely would have eventually got the Cerebral Palsy tag as well. However we accidentally walked into the door of the one Paed Neuro in our state, who listened, asked questions and saw a mother and child with similar disabilities as too big a coincidence.

    I am disgusted that there are numerous historical references in medical journals that suggest L-Dopa be trialled for all motor disorders without cause and this is not happening. So little is known about DRD and it’s diversity of symptoms and they can be well-disguised as other things, the other Paed Neuros weren’t aware of it. I would bet my entire house that most of the children and to some extent adults diagnosed with these conditions would respond to L-Dopa.

    Instead of considering wheelchairs we are now looking at bycicles. 1/8 of a tablet did what 12 months of speech therapy couldn’t and now we couldn’t get a diagnosis of Global Delay if we tried. How many adults and children would benefit from this drug? Why is the medical profession not organising widescale trials. We saw 3 Paeds, 4 Speech Therapists, 3 Physios and an OT and not one of them knew of the condition or could pick the symptoms. There is an underlying attitude of there is nothing you can do for developmental disorders so accurate and timely diagnosis doesn’t matter.

    PS Thanks for saying about photoshopping the drool, for 6 months I kept sending relatives old photos as he would be the one throwing his head in the opposite direction.

    Wishing you and your family all the best,and take every ounce of love out of every day and treasure it. Thank-you for your Blog!!