Kids With Pots -who Should They See?

[dianaD]

Hi,

I have POTS and EDS, and now my hypermobile son is fainting when he stands, has abdominal pains, fatigue, blah, blah, blah.

So, who do you take kids to see with this? I don't want him to have a lot of unneccessary tests like I did ( he is 8). Is there someplace that is familiar with kids and dysautonomia? Should I wait months for Dr. Grubb?

Any suggestions you have would be appreciated.

Thank you!

Diana

[Lukkychrm42]

I would advise you to contact DYNAkids (www.dynakids.org). There is an e-mail address as well as a phone number to call, and although I know of few doctors who treat dysautonomic kids, she's probably got a more comprehensive list.

Good luck!!!!!

[mom4cem]

Dynakids would be a great place to start. I know there are two in NY but I don't know if you are from the area.

Sorry that your son has to deal with this also.

[dizzygirl]

yeah iw oudl suggest dyna kids too.. and make an appointment in the mean time with dr.grubb.. if memeory serves me correctly his bussiness card states pedicatric cardiologist as well..

maybe you could go to your PCP while waiting to get into to grubb or another pots doc.. good lcuk I'm sorry that your son is dealing with pots as well..

[UnicornIsis]

I see Dr. Hasan Abdallah. He's a pediatric cardio and he REALLY knows all of what we're going through.

After hopkins said "go home I'm done with my study so I'm not treating anyone anymore" I found Doc. A. He is the reason I have the quality of life I have now.

His website with contact info is: http://www.childrenheartinstitute.org/index.htm

And there are 2 other doctors in his office who do NOT specialize in Dysautonomia. Don't see those. And you may have to re-schedule your appointment several times to actually get to see Doc A., but its worth it believe me. My mom and I used to drive (well me riding) 3 to 3 1/2 hours each week to see him, and that was one-way. IT WAS WORTH IT!!!!!! We don't make the drive anymore, because I moved out of state.

But believe me, he's worth it. And he'll treat you even if you don't live within driving distance of him. Please give his office a call and SAY: "I'm a POTS patient." When you ask for an appointment time.

Also if you don't want to see him or want someone closer to you, call DYNA Kids.

Hope this helps.

UnicornIsis

[sstephan]

Hi

I am not sure where you are from but there is a doctor in Chicago. My 18 mo old daughter is having some issues that they were not sure if it was autonomic in nature. We had a consult with Dr. Todd Davis at Children's Memorial in Chicago. He is listed on this website- that is how I found him. He does not see patients regularly, however, his nurse was very accomodating and he saw my daughter on consult basis. Otherwise I would suggest a pediatric cardiologist. My daughter has seen one in Chicago and most should at least know something about POTS. Best of luck.

Susan

[cmtaylor5]

Hi, Diana,

Although I have never posted about this, I also have a son that has POTS symptoms. His are the same as your son's, but without the fainting (I don't have a fainting problem, either). He also experienced unexplained anxiety and heart racing. He is also hypermobile and has a lot of Marfan's characteristics. I found that it was pretty easy to get a consult with a pediatric cardiologist since my dx was already in place. We were new to the area and I called the peds cardio that his doctor had recommended and spoke with the nurse before his appt. I wanted to make sure he was familiar with POTS, and that he treated it.

I was very surprised that the entire practice was very familiar with POTS. It seems that these symptoms are (?) more common in kids. I was worried that they were going to do a TTT, and also that he would just be poked and prodded in general, and that maybe it would turn out to be nothing.

The nurse ordered an event monitor in advance of the appt. at my request (this turned out to be a really smart thing to do), so the results were already in at his appt. All of his tachycardia turned out to be sinus tachy (the same as me). He was also physically evaluated (mostly for Marfans) and had an echocardiogram right during his exam. The doctor found no evidence of a bulging aorta, but did find MVP. He felt it was resolving (no doc had ever picked this up on examination before, but the cardio listened to my son's chest in a variety of different positions. It was squatting that illicited that murmer/leak.)

I also had MVP as a child, and it also resovled in early adulthood. In the end, the doc told me that he thought all his symptoms were related to MVP. He didn't want to medicate my kid, and he also didn't restrict any activities. He just said to use common sense, and he said, "I'm sure you've learned tricks to accomodate your symptoms by listening to your body." He said that my son should do the same thing. Stay hydrated, sit down when you're tired, and no long periods of standing in one place (this was a big problem for my son). He has to go back in 2 years to see what's going on with the MVP, or sooner if he has an increase in symptoms. It has been several months, and he's doing fine.

I also asked the doctor about the likelihood of this getting worse and he told me that "all the evidence isn't in" but it would be more likely that he will not be effected once he gets past puberty (he's about to turn 13) since he's male, and that he will just outgrow it as the MVP resolves. I'm hanging on to that.

Sorry this is so long, but I just wanted to share how it happened for us. I really dreaded the possibility that he would be poked, prodded, misdiagnosed, etc... It just seems like it was easier for him, maybe because the doc was so familiar with the condition in kids, or maybe because we were working backwards from a POTS diagnosis, instead of trying to find our way toward one.

Best of luck to you and your son!

Carolyn

[dianaD]

Thank you all so much! This is extremely helpful!

Diana