looneymom

I feel for you. Try and find a doctor that will do a tilt table test. My son has been sick since December 2010. He was put through a tilt table in October 2011 and was diagnosised with POTS. However, our cardiologist wanted it to be confirmed and referred us to Mayo in Rochester. My son saw those doctors in December 2011 and he does have POTS. Since our Mayo visit, some other unusual symptoms have appeared and we probably will be making another trip to a different clinic soon. The best advice I can give is go to a clinic that is doing research on your daughters symptoms, so you can understand any underlying conditions that are affecting the POTS. Our son has not been able to attend school since January 2011. I hope you find the answers you need. I am a former special education teacher and had to quit my job because my son's medical condition is unpredictable. POTS comes with the good, the bad, and ugle days. My family is adjusting and we take one day at a time. If you would like to read about our family's journey, I started a blog called survivingpots.com. Many of my friends, chruch members and former students read the blog so they can keep up with my son's condition. There is no foul language in my blog. I believe that my God has a plan for my son and family.

I am new to your forum but have lots of questions to ask. I have a 12 year old son that was diagnoised with POTS at the Mayo Clinic in December 2011. Since he was diagnoised, lots of other symptoms have started appearing. I have a neurologist and a cardiologist that have helped manage his condition but still have many unanswered questions. Both of these doctors are thinking that my son might need to go to the Cleveland Clinic in Ohio to have a further evaluation. How anyone ever been to this place? My son has started shaking and having termors from waist down. This started about the middle of June this year. He saw his neurologist around the first of August. I was sending her video clips of what was going on at home but actully seeing it happen in her office was priceless. She told me this was a involuntary movement disorder. Does anyone suffer from this? At first I thought the heat set this off, but that does not seem to make a difference. My son gets so shakey, that he cannot walk and has to use the wheelchair. Would love to know about a doctor that is child friendly and could help my son more with his POTS conditions.

My husband and I will never forget the day when we were told that our 11 year old son had POTS. At first, we thought no problem, it will be ok. But little did we know how much it would change our life style. My son became very frustrated because he can't understand why the doctors can't fix this problem. He wonders if he will ever be able to play basketball or football again. His older brother hopes that POTS will not come visit him any time soon. Our family takes one day at a time. We have realized that POTS is unpredicable. You take the good days with the bads but we all look forword to the day when he will outgrow POTS. So overall, my family has accepted this rare disorder and is trying to move on.

My son was diagnoised with Pots in December of 2011. He has been going to physical therapy and just now able to walk 10 minutes before needing to rest. He also rides a stationary bike in the afternoon for 15 minutes. He is beginning to see some results also. I would agree that exercise has its benefits and to be consistent. He is just now able to exercise everyday. At first, he was only to do it every couple of days and he really didn't understand why it would help him. He has more energy and does not lie down during the day. Since the weather this week has been cooler, he has been able to walk outside and get some sunlight.

My son has POTS with low blood pressure and has been on Midodrine for over a year. The first dose he was put on was not enough because his blood pressure would drop during the slightest physical activity. So his dosage had to be upped some more. His blood pressure is more stable and he is able do more than what he was one year ago. One year ago, he was unable to walk and had to be in a wheel chair. Finding the right meds. to help with the problem is a battle because you never know your body is going to react to the medication.

I'm glad you asked this question. My son has a very sensitive scalp and hair cuts are unbearable. Before he was diagnosed with pots, he could not stand to be touched and refused to wear socks because it felt like pins and needles. He is finally able to wear socks and have a sheet next to him. But like you, I would really like to find something to help with the scalp pain.

My 12 year old son suffers from a daily persistent headache and his scalp is very tender to touch. He has a hard time shampooing his hair and hair cuts are unbearable.

If you have this problem, what makes it better or go away?