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Autonomic Dysfunction?

EmAreEmAre member
in Special Needs
My daughter had her first neuro appt yesterday. The neuro felt there was a strong possibility that she has an autonomic dysfunction due to her inability to regulate her temperature and ongoing struggles with reflux and constipation at 3.5 yrs. She will be having an MRI of the brain soon.

She was diagnosed with a genetic disorder last year (16p11.2 deletion) as well hypotonia and developmental coordination disorder. She also is extremely small. She became FTT at 9 mos and is only 23 lbs right now. She doesn't eat much and also has multiple food sensitives.

Does anyone have any experience with autonomic dysfunction?

Thanks!
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Re: Autonomic Dysfunction?

  • twoasone1twoasone1 member
    My son was just diagnosed with Autonomic Dysfunction and Autonomic Neuropathy a few weeks ago.  We go back to the specialist August 27th to look into everything further.  They feel there is something bigger going on that would explain all of his symptoms.  He sounds similar to your daughter.  Food issues, FTT, hypotonia.  He also doesn't sweat and can't regulate his temp either way.  
    They are suspecting a Mitochondrial Disorder in my son.  I asked a question about him further down on this page.  It lists all of his symptoms there.  I don't know much about it yet, since he was just diagnosed.  My understanding though is that it is usually a symptom of something else.  
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  • EmAreEmAre member
    Thank you for the response. I looked at your other tread, and I do see some similarities. I have started to suspect some type of mitochondrial dysfunction as well. She doesn't seem to have the fatigue, but many of the other pieces fit for her. Do you know if one could have some type of mito dysfunction and not struggle with fatigue? She does have muscle fatigue with certain tasks, like using scissors. But she has a good overall energy level. Also, does your son tend to get very high fevers without other signs if illness?
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  • twoasone1twoasone1 member
    He does.  We have been fighting a fever for 9 days now.  There are so many kinds of Mito diseases, that I think various types of symptoms would all fit.  I was told that a lot of the time, diagnoses is done by eliminating all the other possibilities.  
    I think the fever is probably because they can't control their body temps.  I have a girlfriend whose son has Autonomic Dysfunction as well, and she told me to keep him shaded outside as much as possible, always offer water, keep a fan nearby, etc.  For my son, he also has to wear mittens as soon as it is cooler than like 60 out cause his hands get painfully cold and turn blue.  It is hard on him where we live because it goes from 100 degrees to 55 within a week.  Than the winters are down to -25 out.  He would probably do better in a more even keel environment.  
    It sounds like your daughter has more small muscle fatigue versus overall or large muscle fatigue.  
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