Any parents with children that have dysautonomia?

Hi everyone.

My daughter was diagnosed at the age of 5 with dysautonomia. Sydni is now 7.  She suffers daily from the symptoms.  We have seen 4 different doctors. Her pediatrician has been the most help.  He contacted Vanderbilt and they gave some insightful information but they not deal with children this young.  The neurologist told us that he usually does not see patients this young either.  As a matter of fact, she is one of his youngest patients.  

Is there anyone else here that has a young child dealing with this?

Thanks,
Leah

[faithinspires]

Hi Leah,

My 3 children and I all have dysautonomia. Over the years I have gained a lot of information regarding dysautonomia, not only regarding myself, but my children.
Please feel free to contact me, if I can be of any assistance!

[Heiferly]

There are groups geared specifically toward children.

http://www.dynakids.org/index.jsp  for non-familial dysautonomias.
http://www.familialdysautonomia.org/ for familial dysautonomia.

[AnitaBarg]

I also have a daughter who began symptoms at age 4 1/2, but at that time I had not been diagnosed (I'm older so back then they really didn't know how to diagnose it, or really much about it).  Since then I have learned a lot and she was diagnosed in high school.  The University of Michigan was doing a study (I'm not sure if they are done) looking for a specific genetic marker.  They looked extensively at my family as we have found that so far at least 50% in each generation has it. Also, it does not have to be passed by someone who has it.  My Grandfather had it, he had 6 kids, 3 do and 3 don't.  My mother does not but I have the more rare severe autonomic failure, my brother doesn't have it, we each have one daughter with it and one without - the same with my cousins.  The girls in my family usually get symptomatic between 10 - 13 years old, the boys however do not until late 20's to early 30's.  So my brother and I don't know about our sons yet.  You can contact me anytime with questions.

[genevananny]

me & my daughter have dysautonomia & her symtoms (symptoms) started at 8 months old but was treated for seizures untill she was a teen. she is 19 now & has bad spells & now she has a daughter who will be 2 years old in Dec. & she has been having these sama spells for the last year but no one is helping us , i have told them the history but no one will test her for this at her age.they have sent us to so many doctors just the last month...in fact we go to a ENT tomorrow they do test after test but not the one i feel in my heart will find it ! just last night she had a severe one & we honestly thought she was dead. PLEASE SOMEONE HELP MY GRAND-BABY

[Heiferly]

You replied in a thread that is 2 years old, and as such is very outdated.  So that your post will get the attention it deserves, we recommend that you start a new topic of your own.  To do this, please click on the green "post a question" button at the top of the page.

Thank you so much for your time,
Heiferly.