MommaHelen

Unknown cause- most likely mitochondrial disease. Sudden onset after an illness that lead to a long hospitalization for dd.

Wow, great ideas! I will see if we can do some of those.

How in the heck to I get a toddler to take in salt? We are supposed to do 1/4 tsp 2x/day and that is a lot when you have to eat it. She has food intake issues anyway. Any great ideas on getting the salt in? She can't swallow pills.

Thanks for the welcome! I am hoping this will be a great resource as we navigate life with a toddler having autonomic dysfunction. It's been a challenging road learning her quirks and I can use all the help I can get!

I don't know about where all of you life, but very few doctors here are familiar with dysautonomia. I find myself having to explain and educate doctors on what it is and how it affects my toddler nearly every time we add in a new specialist. Have any of you made a brochure or something like that? Do you have to educate your medical professionals?

Thank you for sharing the information. I am always searching for new things to learn about dysautonomia!

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.

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!