Anyone Else Go To Duke Medical Center?

[rmlyonsfamily]

Just curious if anyone else goes to Duke Medical Center for treatment of Dysautonomia or if anyone else went there for evaluation?

[Connie]

Yes, my son goes to Duke. His cardiologist diagnosed him four year ago at 11 years of age. He had the tilt test done a couple of years later. We also took him to see Dr. Grubb in Toledo where he received the diagnosis of POTS with hypermobility.

[rmlyonsfamily]

Toledo vs Duke! Wow that's quite a distance. I'm actually from the Defiance Ohio area, but moved to North Carolina in 2006.

We are new to Duke Medical Center. We've seen Dr. Camitta, but she's now being followed by Dr. Kanter and Dr. Carboni who really specialize in Dysautonomia (or so we're told). Do you know what their "Autonomic Studies" consist of? They haven't given us much detail other than it will be an all day process.

K is having more low blood pressures and is in bradycardia AGAIN. Her heart rate hasn't been over 45 all day long... leaving her very sluggish. I called them today to see if they wanted to see her, but didn't get a return phone call.

[Connie]

My son had been going to Duke for several years before he saw Cardiology. Even after his initial Dysautonomia diagnosis, we waited a year or so to have the tilt table test done. The tilt table test by itself was over 1/2 day by the time they finished and talked to us. My son is followed by our regular physician and other specialist because they cardiologist at Duke diagnosis the cases but did not have a lot of time to see my son. Phone calls were hard to get returned, etc.

My son is being checked for a mast cell disorder now. If that is not part of the problem we will look elsewhere because he is having severe memory issues and a host of other symptoms.

Good luck at Duke. I hope your experience is better than ours but at least we received a diagnosis for which I am thankful.

Hope

[rmlyonsfamily]

I'm already experiencing some of what you are saying. We were told June 9th that they'd be scheduling her for the testing and it's yet to be done. I've called a few times and either I don't get a call back, or the person I need to talk to is off. I'm kind of a squeaky wheel though and won't let it go. I'm actually going to be calling them today again. I'm also there on Monday with her for a Rheumatology appointment and plan on asking while I'm there if I don't get anything today.

Do you live in North Carolina? If so, can I ask where you take your son?

[rmlyonsfamily]

Also - as far as Toledo goes... we have family up there. Would it be more beneficial to have her seen up there to get things rolling?

[Connie]

I take my son to a regular physician who is willing to try different medications. I have not been able to find a Dr. that specializes in POTS in NC. My son is being checked for a possible mast cell disorder and the Dr. checking him told me she works with a Dr. closely. When I find out the physicians name I will be glad to let you know. Unfortunately it will be about two months before we obtain all the lab results back from the mast cell issue.

As far as Dr. Grubbs, I was glad we went and we did receive a slightly different diagnosis from him than from Duke. I feel it is too hard to work long distance on trying to find medications that work even though our regular physician is willing to work with Dr. Grubbs. All the medications we have tried have not worked. That is one reason I am looking at another illness. I feel there is more than one illness involved. As you probably will discover in order for your daughter to receive the best of care you will have to champion her medical care. That is one reason I love this Forum. It has made such a difference to my mental wellbeing. Everyone on the Forum is so supportive and helpful. It makes such a difference to me to know we are not alone.

I spend a lot of time researching POTS and other illnesses to try to be as supportive of my son as possible. I have finally realized I need to apply for disability for him because his memory issues are so severe. That has been a long process for me.

I hope you are able to receive a diagnosis for your daughter and hopefully the medicines to treat her. Again as soon as I have the name of the physician in NC that specializes in Dysautonomia I will pass along the name to you. Try to stay as positive as you can and trust your instincts as a mom. Good luck at Duke.

[surfgirl14]

I just went to Duke Children's last week and saw Dr.kanter. He was really good and knows a lot about dysautonomia. I also have a cardiologist down here in North Carolina and he is really good and follows up with me and my POTs. He referred me to dr.kanter to help me get better treatment and get more knowledge on my condiiton. I am supposed to be having the autonomic testing done, and hopefully I will not have to wait that long? Does anyone know what the testing entails?

[kclynn]

I sent you a PM but I also wanted to add that it is my impression from what I have read on here that communications with the Drs. and their offices can be difficult, even for the best Drs. and maybe more so for them. I think their are just not enough Drs. in this specialty and the good ones are just very busy. Hang in their and be persistant.

I hope your daughters downturn is a temporary one. My son has been really up and down a lot since school started. I had to send teachers a note that he was not able to finish his homework tonight and will complete it over the weekend (I hope).