Have any of you found out if Non-Familial Dyautonomia has a gene. We can't believe it, my younger daughter who is 12 just started getting all the symptoms my older daughter had when she started 3 years ago around he same age. Is there a genetic test?
I'm also curious about that. My son,14, has been diagnosed with autonomic dysfunction and I've mentioned my daughter,17, to his doctors. She has fainted 3 times in the last 6 months when going from sitting to standing. She also has some dizziness. I was told that she does not need to be treated since it isn't interferring with her daily life. But it seems odd for both kids to have it.
Also, my daughter has port wine stain on her face. I'm wondering if this is related. The nerves on her right side of her face don't work properly and the blood pools. She has had to have laser surgery twice to make the pooling go away?
Hi Christy, Believe it or not I'm presently in the Miami Childrens hospital with my 12 year old daughter with the severe nausea, vomiting and stomach pain. As you are aware my older daughter was diagnosed 3 years ago but is presently under control with meds.My older daughter also started with stomach issues. My husband called Grubb the world renowned dyautonmia dr and he said it is very common for siblings to develop this. She has been sick for 3 weeks. There is a Gene that we researched that can be passed down.
I would look into it with your daughter maybe she only needs salt etc. You don't her going around passing out. She could hit her head and have a more serious injury. I'm not sure about the port wine stain. Neither of mine have this. I will contact you later with the meds that fixed my older daughter.
It's also possible for your kids to have a gene that's not directly related to the autonomic nervous system, but can affect it. For instance, I have an autoimmune disease that is genetic and is responsible for my dysautonomia. Others in my family have milder symptoms of the autoimmune disease and dysautonomia. Hope this makes sense. My brain went on vacation :)
While keeping hydrated seems to be very important for all POTS the salt doesn't help with the genetic/Hyperadrenergic form.
My now 18 year old daughter was diagnosed 1 1/2 years ago after months of doctor visits. The diagnosis of POTS by a cardiologist really didn't help enough unfortunately as he kept giving her cardiac meds and florinef as well as telling us to increase fluid intake. None of that helped at all and finally our regular doctor put her on Birth Control and Cymbalta which did help. She does have intestinal issues (worse again lately).
My 17 year old son had a 'borderline' tilt table test.
They have both had nausea issues for years. I have also had nausea issues as well as headaches/pressure, dizziness as far back as I can remember. I used to just think it was allergies. My mom takes sudafed every day and has for MANY years. (This is one thing listed on the table as being helpful for 'H' POTS.
In discussing with family members we realized that my mother, myself and two of my nieces have all experienced a variety of symptoms that point to this Hyperadrenergic form of POTS. My daughter's symptoms, unfortunately have been much worse than the rest of us.
I believe Irritable Bowel Syndrome (among other intestinal problems) are common in this form of POTS.
You just have to be your own advocate and read/research as much as you possibly can! Doctors seem to know little (if anything) about POTS in general....much less the Hyperadrenergic form. I brought Dr. Grubbs articles to my daughter's cardiologist and had sent him a detailed list of my moms and my symptoms that led us to believe it was this hereditary form and he pretty much brushed us off.
I hope the research continues to learn more about this.
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