Where to go for testing

[Jean123]

My son's cardiologist has decided to honor my request for a referral for some dysautonomia testing. I have read many of your posts regarding doctors and places to go. I need to find a doctor who has a caring bed side manner for my frightened, 13 year old, son. I don't think that he can handle anymore doctors who look at him like he is crazy. He has already been to a psychiatrist who ruled that diagnosis out.

[Guest Mary from OH]

Where do you live?? Doesn't your Children's Hospital do any testing through their Cardiology or Neurology departments? Our Children's Hospital does. It's Columbus Children's Hospital in Ohio. We have several Electrophysiologists on staff. My daughter saw Dr. Ro.

www.childrenscolumbus.org

Also, when I went for a consult regarding my daughter, they talked about just taking medical hx and family medical hx and her symtoms etc. and just treating her symptoms without necessarily having her have to go through the tilt table test. She had an EKG and Echo. The meds she is on for her migraines (propanolol) is what they usually use to treat kids with POTS at our hospital.

Hope that helps a little. Also, my daughter is only 5 1/2 years old.

[MightyMouse]

Please see the "help yourself" section at the top of the forum for medical resources:

http://dinet.ipbhost.com/index.php?showtopic=1954

[Jean123]

Wow! I have difficulty facing what my son is going through at 13 years of age. I couldn't imagine a 5 1/2 year old going through the same thing.

I have looked at all of the doctors on the website. I know that it is a good resource however, I was just trying to find someone who sees children that would have a good bedside manner.

I live in Houston and as large as it is we don't have ANY testing facitilites. My son does not need to have a tilt test because he has symptoms everytime he gets up. His pressures now drop (and of course his heart rate races) when he sits as much as it does when he stood a few weeks ago.

He can't walk, stand, or sit. He can only lay in an elevated bed. He also is in therapy.

We are going to have to drive a very long way where ever we go so I would like any information on doctors. I have seen Dr. Grubb's name mentioned many times on this site. I also heard that he was sick. Does anyone know if he is better and seeing patients again?

[PattiL]

Hi Lynna,

My daughter was 16 when she was diagnosed with POTS. We live in Ohio and are quite lucky that we have University Hospitals and the Cleveland Clinic for testing. If you do want testing, I would go to to UH and see Dr. Thomas Chelimsky. My son also started seeing him when he was 13 for a milder form of POTS. In my opinion he has a much better bedside manner than the Dr. at CC. We also see Dr. Grubb. We had an appt. in Feb. that they cancelled due to his illness and has not been rescheduled yet. Unfortunately, I believe that there is quite a long wait to see Dr. Chelimsky now also, maybe due to the fact that Dr. Grubb is out of commission for awhile? I know Dr. Grubb is seeing patients, but I do not know if he is seeing anyone new. He is an absolutely wonderful, compassionate, caring Dr. your son would love him. My daughter was unable to walk unassisted when we first saw him. Our first consultation with him was 2-3 hours. I hope you can get in to see him. Try to make an appt. no matter how far into the future it may be and then still search around for another Dr. in the meantime. Hope this helps.

Patti