JuneFlower Posted February 6, 2014 Report Share Posted February 6, 2014 I am so desperate to get all the tests necessary and the best treatment for my daughter. She already has a cardiologist, a gastroenterologist, a neurologist and an endocrinologist. My plan is to find a specialist in Dsyatunomia (the cardiologist said she has that) if her Addison's test is negative.So I am asking if anyone can tell me good reviews of anyone they've seen. I am considering Dr. Julian Stewart in NY (he is very close to my house), Childrens Hospital in WI with Dr Chelminsky, or the Mayo Clinic. I am open to any additional suggestions. I know there is a list on this website. But I was hoping for actual 1st person reaction to these doctors. Some of them are far away and will cost a lot. But I will do anything for my daughter. ThanksJune Quote Link to comment Share on other sites More sharing options...
griffism Posted February 6, 2014 Report Share Posted February 6, 2014 Hi June,I currently go to Dr. Suleman, who is an electrocardiologist. He is in Dallas, Texas, which is far from New York. However, after only a month of treatment I am starting to feel like my old self again! I would definitely recommend him for the treatment of your daughter, as he does a thorough work up, including total autonomic nervous system testing and additional testing to determine the cause of your daughter's POTS. Although Dr. Suleman is great, I can tell you that seeing any specialist in Dysautonomia is far better than seeing a doctor who doesn't know anything or much about POTS! It was the best thing that I ever did. Good Luck and I hope your daughter gets the help that she needs!Stefanie Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 6, 2014 Author Report Share Posted February 6, 2014 Stephanie,Thank you so much. I will add your suggestion to my list. I am so frustrated and have finally realized that we have to see someone who deals with this all the time. I kind of felt dumped by the cardiologist at the last visit.June Quote Link to comment Share on other sites More sharing options...
IceLizard Posted February 6, 2014 Report Share Posted February 6, 2014 Thank you Stephanie for bringing up Dr. Suleman. I live in Northern Louisiana and I was at a loss for where to go next for autonomic testing. Well, now I know . Quote Link to comment Share on other sites More sharing options...
Chaos Posted February 6, 2014 Report Share Posted February 6, 2014 I don't know if Peter Rowe is accepting new patients but you might check him out as well. He sees pediatric patients. There was a member on here before who was very active but hasn't been on for a couple years. Both she and her son had POTS. Her son was a patient of Dr. Rowe and she always had nothing but glowing reviews for him. Last I heard her son was off at college and doing well. Dr. Rowe is in the northeast part of the country but can't remember exactly where...NY? Baltimore? Somewhere over there. Haven't seen Julian Stewart. Think his research is brilliant. Not sure if they follow people or just do studies and evaluations. Hopefully Chrissy D will chime in with their experience with Dr. Chelimsky. I believe it was very positive.Good luck. Always hard watching your kids go thru health problems!! Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 6, 2014 Report Share Posted February 6, 2014 Dr. Peter Rowe is at Johns Hopkins in Baltimore. As Chaos said I also remember a former member giving him glowing reviews. He has a few videos on YouTube so you could view them to get a feel for him. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 6, 2014 Author Report Share Posted February 6, 2014 thanks guys! I will look into Dr Rowe as I am close to Baltimore. I will also check with Dr Stewart but it does seem like he only does research.June Quote Link to comment Share on other sites More sharing options...
Christy_D Posted February 6, 2014 Report Share Posted February 6, 2014 Yes, I loved Dr's Chelimsky (Thomas and Gisela). I felt like we got two for price of one. When they were in Cleveland our appointments were with both of them at the same time, so we saw the neurologist and gastroenterologist in one visit and both specialized in dysautonomia. They would bounce theories and ideas off each other and what line of treatment they would start. They gave us plan A and plan B,etc...They both also do research on it and are very thorough, lots of testing, etc.. Dr Gisela told me at one of her appointments that she was sick as a child and doctors couldn't figure it out, so she could really relate to our circumstance. I don't know if they have the same set up in Milwaukee that they did in Cleveland.Christy Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 6, 2014 Author Report Share Posted February 6, 2014 Christy- Oh they used to be in Cleveland? I see it looks as if they are at Childrens Hospital in Milwaukee. It seems like a good program. They already called and talked to me. (well some secretary for them) But they were knowledgeable and I think I will call back if my daughter tests negative for Addisons. A lot of the POTS symptoms are the same as Addisons. Her unexplained weight loss is very worrisome. Does anyone have that?June Quote Link to comment Share on other sites More sharing options...
Christy_D Posted February 6, 2014 Report Share Posted February 6, 2014 My daughter has weight issues. When she was in the 8th grade (she is now 22) she weighed 114 at just shy of 5'4". By the end of her 9th grade year she weighed 93. The pediatrican ran tests for her thyroid, but it came back fine. She still has a very difficult time trying to get her weight into triple digits. She can get her weight up to 102 and a week later she is back down in the 90's. She eats plenty, a lot actually, but can't keep her weight up. Sometimes her cheeks sink in and she looks gaunt. She doesn't like it, and of course, she doesn't get much sympathy from people for having an underweight problem. But she is tired of looking like a 14 year old when she is 22. Quote Link to comment Share on other sites More sharing options...
PRmeg Posted February 6, 2014 Report Share Posted February 6, 2014 I see Dr Blitshteyn, who is located in Williamsville, NY. She has helped me a lot and is very knowledgable about dysautonomia. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 6, 2014 Author Report Share Posted February 6, 2014 ChristyD- Sorry to hear about your daughters struggles. My daughter is 5-3 and 84lb. Not good. We are seeing a nutritionist tomorrow. Thank you PRmeg. I will look into your recommendation.June Quote Link to comment Share on other sites More sharing options...
Chaos Posted February 16, 2014 Report Share Posted February 16, 2014 JuneFlower- Don't know if you saw this video that TachyforFiftyYears posted the other day but it features a pediatric cardiologist from Children's Hospital of Philadelphia who specializes in POTS. Might be another option for you to check into who is closer to you. Hope you can find someone to help your daughter. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 17, 2014 Author Report Share Posted February 17, 2014 Hey thanks so much for thinking of that! I will check it out right now.June Quote Link to comment Share on other sites More sharing options...
Foggy01 Posted February 17, 2014 Report Share Posted February 17, 2014 I think Doctor Stewart takes only kids. How old is your child? They only take adults for studies.I'd recomment him over the Mayo to be honest. I feel he's far more enlightened about POTS and its associated causes/consequences than some of the docs in the Mayo (won't name names). Good luck. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 17, 2014 Author Report Share Posted February 17, 2014 I think Dr. Stewart is pretty far away….I can't remember where. I'm on the east coast. But I will look him up. Thanks. June Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 17, 2014 Author Report Share Posted February 17, 2014 If you mean Dr Julian Stewart (there is more than one I think), I'm not sure if he treats patients or just does research. There isn't much info about his office. But he is very close to us.June Quote Link to comment Share on other sites More sharing options...
corina Posted February 17, 2014 Report Share Posted February 17, 2014 Dr Julian Stewart is on our Physician's list, you can find more info there! Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 17, 2014 Author Report Share Posted February 17, 2014 Yes I've been to his website and everything. It appears he does research. It isn't clear. I finally decided to email him and ask. We'll see. Thanks,June Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 17, 2014 Author Report Share Posted February 17, 2014 I watched half the video by Dr Jeffrey Boris. He seems knowledgeable but I noted he pushes his patients back to school no matter what. I used to be all for that until my daughter B/P was 60/30. Now I want her to take it day by day. Not crazy about forcing her to go to school until she feels better. But the secretary from his office called me. Now we are playing phone tag.June Quote Link to comment Share on other sites More sharing options...
goodn77 Posted February 18, 2014 Report Share Posted February 18, 2014 Hi JuneFlower!It took me a long time to find a doctor that knew what was going on. Mayo clinic figured it out and I'm sure they have autonomic neurologists considering POTS was "discovered" there in 1993. I currently see Dr. Barboi at Rush University in Chicago, he is just wonderful! Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 18, 2014 Author Report Share Posted February 18, 2014 thank you goodn77. I have an appt for her in May at the childrens hospital of philadelphia. We'll see what happens. He sounds experienced and understanding. That's what she needs.June Quote Link to comment Share on other sites More sharing options...
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