bkweavers Posted November 7, 2007 Report Share Posted November 7, 2007 Hi, I've been reading thru the topics on this forum for hours trying to figure out where to bring my 11 yr. old daughter. We have been to many doctors since she was diagnosed with POTS. Have not found a doctor to fit our needs! We are heading back to Children's Hospital in Milwaukee. We began with them and even though they are a great hospital, they do not have a lot of experience with adolescents and POTS. They are going to look over all of her records and see if they can help us with the next step. I've heard of a Dr. Fischer at Mayo as being a good doctor for adolescents. Has anyone had any experiences with him? I keep hearing about DR. Grubb in Ohio and my husband and I are thinking about trying him as well. Any thoughts out there would be much appreciated! Off the subject- I sooo appreciate all of you for the information you've given to me and my family already. I don't feel so lonely with what my daughter is going thru. Thanks again!Brenda Quote Link to comment Share on other sites More sharing options...
jjpots Posted November 8, 2007 Report Share Posted November 8, 2007 I know this isn't exactly what you were looking for but i just came across a site that talked about Dr. Fischer. It is: www.adiwebsite.org/index2.html, and then I was under the heading "news".I have seen and am going back to see Dr. Low in neurology at the Mayo and someone else on this site told me that Dr. Fealey in neurology at the Mayo is excellent.Hope that is us some help for you and your daughter!JJH Quote Link to comment Share on other sites More sharing options...
lloppyllama Posted November 10, 2007 Report Share Posted November 10, 2007 Dr. Fischer is my POTS doctor, he is who diagnosed me and he is who is treated me now, and i must say i absolutely LOVE him!!! I have had alot of different doctors in my day, and he is by far my favorite. He is very intelligent, wonderful to get along with, and just overall a great doctor. I would deffinetly look into taking your daughter there, as he is a doctor that is hard to get, and if you have the option, i would take it.So yes i have had a wonderful experience with him and would deffinetly recommend him. Hope this helps, if you have any question feel free to PM me!Mary Quote Link to comment Share on other sites More sharing options...
SchneiderK5 Posted November 17, 2007 Report Share Posted November 17, 2007 Hi, I've been reading thru the topics on this forum for hours trying to figure out where to bring my 11 yr. old daughter. We have been to many doctors since she was diagnosed with POTS. Have not found a doctor to fit our needs! We are heading back to Children's Hospital in Milwaukee. We began with them and even though they are a great hospital, they do not have a lot of experience with adolescents and POTS. They are going to look over all of her records and see if they can help us with the next step. I've heard of a Dr. Fischer at Mayo as being a good doctor for adolescents. Has anyone had any experiences with him? I keep hearing about DR. Grubb in Ohio and my husband and I are thinking about trying him as well. Any thoughts out there would be much appreciated! Off the subject- I sooo appreciate all of you for the information you've given to me and my family already. I don't feel so lonely with what my daughter is going thru. Thanks again!Brenda---------Sorry - I'm learning how to make a reply.Hello Brenda,My daughter was diagnosed 4 yrs ago with POTS at age 10, after almost a year of life=altering symptoms (primarily: fatigue, dizziness and inability to concentrate - though there are/were many more which were at the time seemingly unrelated) and of fussing with local doctors and Children?s Hospital - the ?top? specialists in their field and in our area. I understand what it means to need a physician who will go the extra mile for my child. We too had to leave the area to find qualified help - and it made all the difference. The medications prescribed were not different, though the dosages and combinations were. The doctor?s understanding and experience made the difference, because he was able to explain to us what was happening and why. The explanation enabled us to comprehend the circumstance and ...work around it. I use the term ?life-style modification? to refer to what we have found to be the most helpful tool to treat and live around the condition. These things we learned from an experienced specialist. I learned that even doctors who may be familiar with the term may not understand what it means to live with POTS because they have such limited exposure to patients diagnosed with it. Dysautonomia specialists have broader exposure and experience to help guide families - there seem to be a certain few names that I continue to hear as being most helpful. You have, no doubt, noticed them on this forum. (We have consulted with several - all out-of-state for us.)Since each case of dysautonomia is unique, I additionally have learned so much from the anecdotal information on this forum - and I thank each and every one who participates. The willingness of people to share their experiences and offer their hard-earned wisdom is an enormous blessing to anybody suddenly thrust into the ?twilight-zone? of the dysautonomia diagnosis. I cannot say that I understand dysautonomia or POTS - but, I have made it my business to become the specialist in being able to help my child. Qualified medical help and help from others in the same position are the key to moving forward.Regarding Dr. Fischer: While we have not consulted with him, I know many families with children who have and I have viewed a DVD of Dr. Fischer giving a presentation regarding children with POTS. Certainly he and Mayo Clinic have a fine reputation.It has been my observation that the pediatric dysautonomia community is perhaps even more underserved than the adult dysautonomia community. Locally, although we have clinics specializing in dysautonomia - when I contacted them , they were even surprised to hear that my child was diagnosed with the condition. I am not interested in any organization utilizing my child as a ?research? project. It took a while, but we found help. I do not know what information you already have regarding your daughter?s diagnosis, but I highly recommend as your next step contacting the dynakids organization (www.dynakids.org) - a group specializing in serving youth diagnosed with dysautonomia conditions. Many of their members are patients of Dr. Fischer?s. You could call the office directly with your questions.On a personal note - I realize I am a stranger to you, but I understand the ?lonely? feeling of having a child with an illness that the local doctors don?t seem to be able to help, but I want to extend a a note of encouragement. There is help for her and for you/your family. It?s so hard to watch your child suffer. I wish for you an empathetic circle of community support for your daughter and your family.Best wishes.Gail Quote Link to comment Share on other sites More sharing options...
DSM3KIDZ Posted November 17, 2007 Report Share Posted November 17, 2007 I don't know of this doctor but noticed that you were going to Children's Hospital in Milwaukee...........I live about 10 min from there and see great doctors at Froedart. I see Dr.Barboi he is an autonomic specialist. Do you live in Milwaukee? I have a 9 yr old ddaughter and 2 boys, I can't imagine what your going through as a parent. I'd rather suffer thiis illness than my daughter anyday.If you need to compare notes or anything feel free to PM me. Also Froedart has an Autonomic Lab that does the Tilt table, Sweat test, Electrode and breathing test.Good luck to you and your familyDayna Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 17, 2007 Report Share Posted November 17, 2007 Hi Brenda,I'm also the mother of a son with dysautomia. My son became ill at 12 y/o. He is now 14. He sees Dr. Peter Rowe at Johns Hopkins.The information I have is secondhand from a friend, who is a member here, but hasn't posted in ages. Her son is 16 y/o and is being treated by Dr. Fischer. Despite a year of treatment, her son is NOT improving at all. In Dr. Fischer's defense, her son's POTS may be atypical as his primary symptom is "air hunger." Dr. Fischer has not been able to help. They are seeking a new doctor. They are very frustrated. None of the many meds Dr. Fischer has prescribed has helped at all. Maybe their experience is unusual, but thought you should know.Julie Quote Link to comment Share on other sites More sharing options...
lloppyllama Posted November 18, 2007 Report Share Posted November 18, 2007 Even though what Mack's mom said is true for this particular person, I would say he is a great doctor. The meds he has given me have made such a difference. I went from missing half of the school year last year.....to now this year being more involved in things and busier than anyone else at my school that i know....including upper class men, so i would say i have had a wonderful response to his treatment....just for an uplifting experience....i guess you could say.But ultimetly the decision is up to you and your child, but I hope whatever you do works out well for you, good luck! Quote Link to comment Share on other sites More sharing options...
Rachel Posted November 19, 2007 Report Share Posted November 19, 2007 Hi Brenda,I've never been to see Dr. Fischer, but I've heard that he is good. Here are some links that you may find helpful. You can hear from Dr. Fischer and his perspective on POTS, treatment, etc.This is a podcast of an interview of Dr. Fischer: http://www.mayoclinic.org/rss/childrens-health-podcast.xml. After clicking on the link, click on pots.mp3. This is a short video with brief comments by Dr. Fischer: http://www.medicaledge.org/2006june-3.htmlI hope your daughter can find a good doctor and helpful treatment.All the best,Rachel Quote Link to comment Share on other sites More sharing options...
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