MommaHelen Posted February 17, 2016 Report Share Posted February 17, 2016 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! Quote Link to comment Share on other sites More sharing options...
Sylvie33 Posted February 17, 2016 Report Share Posted February 17, 2016 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!Sylvie Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted February 18, 2016 Report Share Posted February 18, 2016 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! Quote Link to comment Share on other sites More sharing options...
Sylvie33 Posted February 18, 2016 Report Share Posted February 18, 2016 Also, GG, your girls might know this...there is an organization called Dysautonomia Youth Network of America (Dynainc.org)...lots of resources. Interesting personal histories that even relate toddler experiences! Quote Link to comment Share on other sites More sharing options...
MommaHelen Posted February 18, 2016 Author Report Share Posted February 18, 2016 Not Familial Dysautonomia- no Ashkenazi Jewish background in either of our histories. Homeschooling is definitely on the table as a possibility. It's frustrating to not have doctors know a whole lot about it. I do most of the educating when we have a new appointment. Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 18, 2016 Report Share Posted February 18, 2016 Dr. Rowe at Hopkins has been very highly spoken of on this forum by members that are no longer active. He is a pediatrician who works with dysautonomia, EDS, CFS in children. He might be a good resource for you. http://www.hopkinschildrens.org/Peter-Rowe-MD.aspx Quote Link to comment Share on other sites More sharing options...
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