Looking For Pots Doctor

I have a son that was diagnosed with POTS this last December 2011. Since he was diagnosed, other symptoms have developed. My husband and I would like to have more answers but are not sure where to go next. Our cardiologist and neurologist have mentioned Vanderbilt and John Hopkins. By the way, both of these doctors are supportive and are willing to listen and learn along the way. Thank goodness for this support. Our son has been diagnosed with vocal cord dysfunction, vocal tics, daily persistent headache and recently a movement disorder. His last testing indicates he has defiencies in precursors to amino acids. We would like to know who is doing research in this area. Before we put our son on GNC Pro Performance Amino 1000, Softgel Capsules, 120 ea , he would roll and shake. He could not sit up or walk. His seratoin and dopamine levels were also extremely low according to blood work. But since we put him on the Aminos, things have somewhat improved. However, whenever there is a change in temperature, he has trouble with shakiness and may not be able to walk. His vocal tic may also come back. He is on several medications which seem to be helping with blood pressure but we are still having trouble finding the right meds to help keep vocal tic and movement disorder under control. I have started a blog called SurvivingPots.com about our current journey. As a parent it has been very difficult to see my son go through all of this. My son was not able to attend school last year and because of this recent diagnosis, he will be attending school online this school year. Our doctors thought this might be best until we could get these other symptoms under control. My son wants to go back to school but he also realizes he needs to get his stamina and energy level back up. He is riding a stationary bike in the mornings 15 minutes and walking on the treadmill for 5-10 minutes. He also does leg weight exercises everyday unless he is shaking too bad.

looneymom looneymom
2 Responses Sep 7, 2012

Dr. Rowe at John Hopkin. Also google spoon theory. Take milk products out of diet, helped my daughts.

My heart goes out to you. I was diagnosed with POTS 5 months ago and it is very difficult for my mom to see me suffer. I feel bad knowing she feels bad. I don't have any advice, but I want you to know someone cares.