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Post by rst on Jun 20, 2016 15:20:18 GMT
Dystonia is a symptom, usually of brain damage or developmental issue. It's just one of the many movement disorders that my son has in the overall diagnosis of cerebral palsy. Most likely, your friend should seek out early intervention services available to her in her community and under whatever payment system open to her. Services likely will include a physical therapist, occupational therapist, speech therapist, possibly feeding supports, a neurodevelopmental pediatrician, and a neurologist.
Since this is a new dx, there is likely to be a focus to find the cause of the dystonia -- birth accident, fetal developmental issue, metabolic issue, genetics, etc. So lots of appointments with specialists. At this age, it's really really important to focus on the baby being a baby -- full of potential and absolutely lovable. If the dystonia is causing pain then addressing the pain is key. Finding creative ways for the child to have typical experiences is sometimes challenging, but so worth it, and really quite possible with a small child -- so encourage her to do all the things every mom does with a one year old. My son used to play in the sandbox with his brothers supported in his bath seat. We took him to the pool, hiking, berry picking, fairs, camping -- all the normal stuff. He did it all, just with extra supports and in his own way.
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Post by newfcathy on Jun 20, 2016 15:26:44 GMT
Cousin's dh has a sister with two teens with dystonia. All my info is anecdotal, secondhand.
The boy is now 21, and his case is much more severe than his sister's. He was quite ill, handicapped in his early teens. One year he could barely move. He then had a surgery that implanted batteries under the skin in his chest. They are clearly visible but he seems to be fine with that. He now has much better muscle control and movement. He is in college, likes to skateboard around campus and seems to be doing ok.
His sister has not had the surgery yet. She seems fine, in fact, her bf doesn't know she has it. She is a talented singer, and just finished her freshman year.
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gsquaredmom
Pearl Clutcher
Posts: 4,078
Jun 26, 2014 17:43:22 GMT
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Post by gsquaredmom on Jun 20, 2016 15:27:15 GMT
My son had it at age 10. Saw one of the top pediatric neurologists in the country. Oodles of testing. Scary six months. He could not figure it out. I figured out it was aspartame when I cut it from his diet and the dystonia disappeared. He was tested for pku and that was negative as it was at birth. Twelve years of no artificial sweeteners and no recurrence.
I hope the baby has a similarly good. outcome. My son was tested for all sorts of tumors, genetic disorders, etc. Very frightening.
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Post by rst on Jun 20, 2016 15:27:44 GMT
Hey, I live the dystonic life style -- it's a major symptom of Parkinson's Disease, which ironically, my DH has (totally not related to my son's CP. I know so many neuro-psychologists and therapists!
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Post by rst on Jun 20, 2016 15:32:41 GMT
The surgery newfcathy referneces is deep brain stimulation -- you can find info under medtronics (the manufacturer. My DH has one -- there is an implant into the brain, the battery packs are implanted just under the collar bone. It can be programmed to basically interrupt the faulty signals being sent to the brain. It's not perfect, but for many people it does offer improved quality of life. The very size of the device makes it something reserved for teens or adults.
There are several medications that can be effective, but again, not generally used in babies and toddlers -- the side effects are difficult to manage. My son started on carba-dopa/leva-dopa at age 6 and it's been a useful drug for him, but it does cause severe nausea and food intake has to be timed carefully around dosing times.
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gsquaredmom
Pearl Clutcher
Posts: 4,078
Jun 26, 2014 17:43:22 GMT
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Post by gsquaredmom on Jun 20, 2016 16:35:12 GMT
I googled "pediatric dystonia reaearch hospitals" and big hospitals from all over the country popped up. Mass General, Cincinnatti, Los Angeles, Boston to name a few. Look for the ones close by and will work with the insurance. Good luck to all.
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