Should we make the trip to see Dr. Grubb ?

[beala]

My 17 year old son has pots and has seen Dr. Low at Mayo. He has tried many meds but continues to feel worse each day . Dr. Low said the only other thing he can offer us is trying an ssri, which we are trying zoloft now with no help. I know Dr. Low is a specialist in this field like Dr. Grubb. Do you think Dr. Grubb will have some ideas to help our son ? We have an appt Aug. 10th. ?

Laura

[POTSparent]

While no experience with either Dr.Low or Dr.Grubb, I can certainly sympathize with the "process" as well as being the parent of a teenager with POTS as, in my case, it's a 17-yr old daughter. Does Dr.Low have your son ONLY on the ssri zoloft? Or is your son taking anything else in combination with it? And what's the worst couple of symptoms that your son is having to deal with (of the long list that I'm sure he's having to work through)? Good luck in August!

[MightyMouse]

Hello Laura,

I'm a patient of Dr. Grubb's. He did give me a very thorough explanation of what's happening to my body, and I continue to bring his summary report to any new doctor's I see locally--it seems to carry more weight than my personal explanations (my report from NIH helps too). I didn't learn much new info at my appointment, but then again, I'd known my diagnosis for several years at that point and was an avid reader of articles. I went there really for a second opinion on the DX, which he confirmed for me. I later got a 3rd confirmation at the National Institutes for Health in DC (Dr. David Goldstein).

He, like Dr. Low, tends to suggest trying an SSRI ifyou've not done so already. Also, each SSRI is somewhat different, and in my experience, Dr. G tends to aim toward Celexa or Lexapro. I was very leary of trying them as I'd already been tried on Welbutrin, and also Prozac--both gave me very bad side effects.

As for long-term follow up with Dr. Grubb, I've tended to try to find more local assistance for myself, and have them call when they get stuck... as noted on this board, Grubb's office is quite busy and it can take time to get a reply to questions--also, as you've found out, it's often quite a long wait for appointments, so if you need help urgently and don't live in the Toledo area, you would do well to have someone locally who at least understands the basics of what's going on with your son--or is willing to learn. I have gone back for follow up appts with Dr. G, but again, I bring all that info back to my local doc.

The bottom line is really that is that you have to weigh out for yourself what you might get from the appointment versus what you need to expend to get there.

Not sure if the above info helps you...hope it does. Nina