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Dysautonomia In A Toddler


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Does anyone have a toddler with symptoms or start their symptoms quite young?

My 2.5yo had an abnormal Q-SART and is showing autonomic neuropathy with significant lack of sweating and blood pressure regulation issues. She has been through open heart surgery and a myriad of other smaller things. She has a stinkin' awesome attitude but the fatigue and resting is high impact in her life. If she continues functioning the way she is, I don't see how school will ever work for her.

The top guess right now is mito (symptoms line up) but so far the blood tests haven't come back showing anything significant.

I'd love any tips or tricks or ANYTHING. I am a desperate momma!

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There is a genetic condition called "familial dysautonomia," or Riley-Day Syndrome, which is first manifested in infancy. It is found exclusively among Ashkenazi Jews.

This may not be what your daughter has, but there is a dysautonomia center at New York University which specializes in it. This might be the best place to take your child. Apparently they have made great strides in treatment of affected children. They deal with very few adults, though I'm going to be seen there next month because I live in NYC. Please feel free to PM me if you would like more information.

Publications about this disorder, as well as support groups for it, may be very helpful to you.

Best of luck....I hope you find other parents to help see you both through!


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My daughter's have never known what it is to be "high energy", that being said, they don't know anything different. It was thought that they might have mito, but they are thinking that it's Ehler's Danlos with a severe case of Dysautonomia. They started showing signs very early in their lives. Lack of endurance and fatigue being the most severe back then. They were never able to go to school because of this, so we homeschooled. It was the best decision we ever could have made. So many options! They have grown to be very well-rounded and educated young women. I know everybody thinks that they must have missed all the fun stuff at a "brick and mortar" school, but when you don't have the energy to keep up, it's not a whole lot of fun. I just graduated my youngest (a semester early!). She is growing into being a wonderful artist and my oldest is half way through her first novel. Your daughter may have to choose things in her life that don't require a lot of physical energy. Not everyone is made to play sports, some of them have to be artists, writers, musicians! Best wishes to you! :rolleyes:

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