We finally met with the Movement Disorder Specialist and she has sent us on another path in terms of a diagnosis for Elizabeth; dystonia. She feels Elizabeth is not Ataxic and that her movements and difficulty walking are due to dystonia. I am on the fence about the diagnosis, I do see some dystonic movements with certain activities and she seems to still have her startle reflex (when she is in a busy crowd walking is hard as she gets startled and falls), she can stiffen up when she is trying to do a difficult task and she frequently cries with leg cramps but I still see her as Ataxic. The Dr. suggests a trial of Levodopa/Carbidopa to see if her dystonia improves as there is a type of dystonia (dopa-responsive dsytonia) that is completely cured with this drug. The new medication will increase the dopamine levels in her brain and hopefully help with her movements, this medication is commonly used to treat Parkinson's. We are hopeful that this medication will at least help with her startling and making her walking more controlled if there is improvement it should be noticeable in the next week or two.
Here is a video of Elizabeth pre Levo-Dopa with Lisa one her favourite physoitherapsits. I would love to hear what other people think of her walking as I have never seen a child with Dystonia walk independanlty.
6 comments:
Thanks for posting this video! ! wondered how Elizabeth looked as she walked. I was told Liam would look like that too simply because of his cerebellum atrophy.
I am amazed at how you can figure out and distinguish one cp term from another! I get them confused and can not define which one or ones that Liam represents because the terms can be so interrelated. And, like Elizabeth, we have had numerous different cp terms used with not a single one being a "definite" definition of his cp.
I hope the medicine works!
Great Video, Elizabeth looks great walking. Ashley has hypotonia but i was told by both her medek therapist that she has dystonia as well. I didn't know there was any drugs that helped. That is very interesting. I'd love to here how Elizabeth responses to the medication. I hope it helps her.
Great video, she looks so enthusiastic! It must be difficult having another diagnosis thrown into the mix. I hope you get some good answers after trying this new drug.
-Patty
Hi,
I'm excited for your trial of the L-Dopa. We wanted to try that but the only doctor's willing to prescribe weren't qualified. Anika has no dystonia so her neuro vetoed it.
When I watched the video I thought "stiffness/spasticity/dystonia". Anika really does have none of that I can (in my untrained but personal experience way) see the difference.
I've heard of a type of CP called dynamic tone. The dystonia happened in motion.
I do a lot of similarities with the extra arm movements and wide uneven gait. (to our ataxic girl)
I wonder if Elizabeth in her luckiness has a bit of both.
How's the L-Dopa going?
Summer
My son Sebastian (he's almost 13 months old) has been diagnosed with Dystonic CP. In my research I have found it mostly fits under the umbrella of ataxic/athetoid/dyskinetic cp. Mainly because his tone varies between normal, stiff and floppy. The dystonic movements are involuntary movements, like posturing his arms. In researching dystonic cp, I found information on Dystonia, which is a different thing altogether from dystonic cp.
Your daughter sounds like such a joy to be around. I loved watching the video of her walk, what an amazing thing. When did she start walking?
Hi there,
A medek therapists that knows you turned me onto this page as they see similarities to my son and your daughter. I would love to connect with you and ask you some questions. Can you please email me at shirit@sympatico.ca?
Thanks,
Shirit
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