tjmerohr

We just found out me scene son also has POTS. The good news is we knew the symptoms and were able to get a diagnosis very quickly. We are confident he will overcome his symptoms as his brother was bed ridden for several months, and now, two years later, is fully functioning and just completed his first year of college. We are curious, however, if any of you have siblings or other family members who have also been diagnosed. Interesting that they have a cousin with it, and possibly an aunt as well. I haven't been able to find much information on a genetic component, so I figured I'd see what you all knew.

For anyone else reading these posts in the future, several people I have met recently see Dr. Abdallah in Reston. Through a client of my husband's we met with Dr. Sica today and were very impressed. He spent over two hours with us, mainly talking to my son,which is needed as he is 18 and will hopefully be going off to college next September. Although we were diagnosed last April, my son was only taking 1/2 tsp of salt a day which evidently is not nearly enough to maintain what his body needs. We are coming up with a game plan (after the blood tests come back) to get my son back on his feet and able to attend school on a daily basis. Our goal is to get him to college classes and have him enjoy a social life (whichhas been sorely missed in high school!) while there. Dr. Sica is on board with this and will be in contact with him regularly via email to make sure that Matthew is not alone. We couldn't ask for more!

It amazes me how this is supposed to be so rare. There are 3 kids in my son's school with it, and 7 others I have heard about in Richmond. Plus I know two others with POTS not locally. Is this because we area learning more so more people can be diagnosed properly? I find this very interesting. It is great that you have support within the school - just to be able to talk to someone who knows what you are going through I am sure is healthy and welcome!

Thanks everyone for you input! Keep posting with suggestions that may help him - each bit of information helps exponentially and gives us hope that he can go onto college and fulfill his dreams!

My son is a senior in high school and currently looking at colleges to attend in the fall. My husband and I have concerns about him attending classes and living in a dorm setting while battling dysautonomia. He was diagnosed about a year ago, missed the entire second semester of junior year, and is struggling this year. He is keeping up with the work but has a hard time getting up finding the energy to stay in school. He leaves the school for lunch as he can't handle the noise and commotion of so many people in one area. He is looking to attend UVA in the fall, and we had a great visit a few weeks back where the school seems to be familiar with dysautonomia. They will put him up in a single room in a dorm so he can shut out people and distractions, but we are not sure that will be enough. He really needs 10 hours of sleep a night to function the next day. You can't tell the people on your floor to shush when you aren't feeling well. We are thinking of getting him a condo or a place of his own off campus so he can get the rest and quiet that he needs. Are any of you currently in college? How are you managing keeping up with classes? Can you find places when you need the dark and quiet? Any suggestions would be greatly appreciated! Thanks!

My son was recently diagnosed with dysautonomia at Children's Hospital of Philadelphia. His pediatrician in Richmond is very helpful, but knows little about the disease. Trying to schedule phone consultations with the doctor in Philly is close to impossible. I was hoping some of you in the area could recommend someone who is familiar with this disease. We need a new doctor anyway as he just turned 18 and doesn't enjoy going to the pediatrician. I read about Dr. Chemali in Norfolk - are there others who like him? Thanks for your help!

I am new to this site and have been reading a ton of posts about fatigue and people not understanding. My son found this site that he often refers people to: http://www.butyoudon...e-spoon-theory/ She does not have dysautonomia but she has something similar that leaves her tired and unable to do the things she wants to do. This may help explain to others how it feels, and why you can't do everything in a single day.