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questions: dystonia/sandiffers/myoclonus/movement disorders
The ped neurologist told me to do some homework and check into some things. I am trying to get info about paroxysmal kinesiogenic choreoathetosis/dystonia, sandiffers, and myoclonus. Does anyone have experience with any of these? Do you have any good info or websites I can check out?! Thanks!
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Re: questions: dystonia/sandiffers/myoclonus/movement disorders
I have personal experience. :]
I have myoclonic movement disorder and several friends with dystonia. What would you like to know? :]
Hello! I have so many questions! If you prefer to answer them through email...here is my email: MarcelleRH@aol.com
What are some symptoms of babies with myoclonus or dystonia? Are there any good websites where I can get info? Any that pertain to babies? What type of doctor diagnosed you? What type of doctor follows your care? Are there treatment options? Are there tests to help diagnose? If you can answer any of these or direct me to some places that would be great!! Sorry so many questions...and if any are too personal please feel free not to answer! Thanks!!!!!
I don't know much about it in babies since mine started later (19ish?)
Does he have other medical issues? Mine seems to have been triggered by either a spinal cord injury (at c2/neck) or traumatic brain injury at 19 (car accident) or possibly my underlying mitochondrial myopathy which was worsened following the accident. Most people I know with these issues (myoclonus, dystonia, etc) it's actually a symptom of something else and isn't existing on its own, though I'm sure plenty of people have *just* myoclonus or dystonia.
I was diagnosed by neuro. First the twitches were labeled pseudo-seizures (which made people think I was faking of course), then the next neuro diagnosed them as myoclonic seizures since I have absence and partial seizures... then the few neuros after him seemed to think it was myoclonus movement disorder. I have a lot of twitching as an 'aura' before seizures, but get it without. (My seizures have been controlled for 2 years now but the twitching continues).
Neuro follows me. I've never really treated it. the drugs they use sedate me far too much and I'm very drug sensitive so I just live with the twitching (and have learned to ignore it) but often it's a signal that something else is worsening for me - seizures, respiratory acidosis (my Carbon Dioxide builds up because my lung muscles are weak which causes pulmonary failure) or other stuff so in a way it's beneficial for me to know that something more serious is going on rather then to cover it up with drugs. I can get very sore/tight after a while from constant twitching. :[
I'm seeing a movement disorders specialist who also does dysautonomia - I have both (plus plenty of other stuff related to my mitochondrial disease). I'm unsure if the myoclonus and dysautonomia are directly connected but this doctor specializes in both. Most neuros have a specialty-area. You're going to want to look for a pedi neuro that specializes in movement disorders for a good diagnosis, and to treat your child long-term. I moved to Boston for better healthcare, I know plenty of others that have to commute to access good neuros.
Here are 2 sites:
https://www.wemove.org
https://www.ninds.nih.gov/disorders/myoclonus/detail_myoclonus.htm
We Move is really great and covers everything you asked about I think! Let me know if you have more questions. :]
Thank you for all of that info! I really appreciate it! We are in the process of figuring out a dx. He is going to see several specialists (developmental, neuro, GI etc). We also are doing a MRI of his spinal cord in the next week or so. I think it's hard for me right now bc there are a lot of specialists...but he doesnt have a central team trying to figure this out. (He had a team the two times we were admitted to childrens hospital...but we decided to try and get a dx outpatient). Thanks for the websites as well! I am sure I will have more questions in the days to come!
is he having GI issues as well? if so, what type/symptoms is he dealing with?
I have GI issues too... like I said I have mitochondrial myopathy which affects multiple systems. GI is one of mine. I have motility problems - gastroparesis and chronic intestinal pseudo-obstruction since my GI muscles can't properly push through my food. I also have malabsorption likely from lack of pancreatic enzymes. I'm familiar with a lot of GI type issues since I was misdiagnosed for years before they finally figured out how everything was connected (the mito).
central team is KEY! I lacked that, and used several hospitals because I took the best specialists where I could get them, and as a result, no one communicated. I'm finally centralizing everything into one hospital with 2 docs still at other hospitals since my main hospital doesn't offer that sub-speciality.
What region of SC are you in? I know a few parents with complex kids in SC (I used to live in Greenville briefly) so I could ask around to see if they have pointers for local care. :]
Has he been this way from birth, or did the issues onset later? How old is he? :]
Right now his only GI issue is reflux. He does have a laryngeal cleft and larynogmalacia (but that more falls under ENT). He had feeding issues from birth (he is almost 4 months old). Our new symptoms are these spells that seem to be nonepileptic (startle, jerking arms and legs, arching back etc). He is also experiencing high tone in his arms and legs after these spells. The ped neuro was concerned with the difference between his sociability/visual acuity and his lack in development of fine/gross motor skills. So, we are doing the MRI of his spinal cord and looking into motor disorders as well as sandifer's syndrome.