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Do We Stay With Our Doctor Or Go Closer?

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I know from reading lots of posts here that Dr. Grubb has been a great doctor for many of you. My 13 yr. old daughter, who has POTS has been to see Beverly twice and Dr. Grubb once although the first time we were there we talked to Dr. Grubb for a few minutes before we left. I think he's an excellent doctor who is very compassionate and I love that he takes a lot of time to talk and listen.

So, what's the problem? My husband and I wonder if we really need to spend the time and money to go to him when it seems that he hasn't really done anything more for our daughter than the doctors did from Milwaukee. We live only an hour from Milwaukee and now that she's older, other doctors would except her into their practice at Froedert hospital. We have felt like each time we were in Ohio, we were sent home with a new medication and that's it. We were not told to call and let the doctor or Beverly know how she was responding to the med and whenever I have tried to call there, it's almost impossible to get information relayed. I know Dr. Grubb is extremely busy and has a lot of patients but we are beginning to wonder how much he's really helping our daughter and is it worth it to drive 7 hours one way to see him when we have other doctors near us. I think we expected him to be a little more aggressive in helping her or is there nothing more that can be done? Maybe we're expecting too much and we've run out of medications to try and things to do. I just don't know what to do and I hate to just stop seeing Dr. Grubb after we went thru so much to get in there. He has so many adolescent patients and has seen it all so maybe we need to be more patient. I know my patience some days is at its end! I don't know how my daughter can be so patient for the last 28 months!

Any advice would be much appreciated. My husband is really pushing this and I'm just not sure. One of the doctors at Froedert sees someone we know locally who also has POTS and she is already feeling much better and she has only had POTS for half the time as my daughter.

Thanks for listening.


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I think it depends upon your doctor's willingness to work with you. It seems as if you are someone who keeps up on all the latest developments. If you have a doctor who is willing to take your suggestions as to treatment options, well, maybe there isn't a need for the trip. On the other side of the coin, it might pay to stay on the "patient list" with Dr. Grubb in case something arises that you need the most expert advise. A trip every two years?

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My understanding is that Dr Grubb has experience with a wider variety of medications than the average POTS doc is willing or likely to try. I guess this translates to more options, but there are patients that do not seem to respond to medication (me being one of them to some extent) but this is because currently treatments are symptomatic and not actually addressing the underlying cause - which is still being argued/debated/investigated.

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