Mayo Clinic Visit Decision

[kjd111]

Does anyone have any experience with Dr Renaud at the Mayo clinic? We have an appointment next week and i'll be honest, we are wavering a little about whether it is worthwhile to go. My daughter has already been diagnosed with orthostatic hypotension due to hitting her head almost 3 years ago during a fall. She is "hypoadrenergic" - her body basically doesn't respond with catecholamines or cortisol while under stress.

We have a very good endocrinologist here in our city who sees my daughter and he has her on a cocktail of medications, of which the last - Octreotide - has been quite useful. She is very fortunate in that she can go to school and have some semblance of a normal life - but she still can't mix exercise with brain activity of a strenuous nature on the same day. If she studies a lot, she's toast. Her doctor has tried to get her into a pediatric neurologist where we are, but she is past 16 and so the ones here won't see her, and she is not yet 18, so the neurologist he wants her to see won't see her either. She continues to have a lot of trouble with her head - if she is on the computer a lot or studies a lot, the whole norepinephrine response (or lack thereof) gets even worse and at night her brain then won't go fully to sleep.

3 years on from the accident, this seems like it has plateaued out. I thought maybe the Mayo clinic would be a good place to have her seen by a neurologist who knew something about autonomic dysfunction, as that is what we have - a head injury causing autonomic dysfunction. But i worry that maybe there isn't much that can be done and we should just leave it. Its a long way - we are in Texas.

Has anyone seen this dr? Was she worth the trip? Thanks so much.

[arizona girl]

Which mayo are you going to? Rochester or Scottsdale? There is a doctor Goodman at scottsdale mayo, that some of the members see. They only have good things to say about him. I don't know much about dysfunction caused by a brain injury, but Barrow here in arizona also deals with a lot of brain injury trauma and cutting edge surgeries and treatments. They might also be helpful.

Depending where you are in texas, arizona isn't as far as minnesota. There also is nothing wrong with seeking out more info to see if there is a better way to improve your daughters quality of life, don't feel bad about that. There may come a time when all that can be done or looked at and you are at the end of the trail, then acceptance and prayer. Three years is still early, nothing wrong with pursuing this a little longer.

[kclynn]

We saw Dr. Renaud with my son. I can't speak to how she might help you but this is our experience. We liked her, she is focused, listens, answers questions. She took quite a bit of time. I had a list of questions and was able to get through them. She is not real warm but she does seem to care and her staff was great. She immediately scheduled my son for autonomic tests after looking through all his records and seeing that just about everything else had been eliminated. That is what I wanted because for various reasons I just knew this was what he had. So I would say our experience with Dr. Renaud was good. My son also has issues with jerks and convulsions which she nor the Autonomic Dr. (Sandroni) do not recognize as pots symptoms and we kind of hit a brick wall with them. Sandroni refuses to prescribe meds for pediatrics (he is 15 so not a little kid).

So our experience was mixed, and while Dr. Renaud was ok, with out the guidance of an autonomic Dr. the effort was wasted. I believe Mayo has some good Autonomic Dr. but would not recommend anyone take their kid to see Sandroni. There would be so much more I could say on that one but won't here. I will also say I think some on here have see Sandroni and thought she was fine.

As soon as we went to Dr. Abdallah in Reston who actually started a treatment plan, my son started to improve.

Why did you choose Dr. Renaud?

Someone wrote recently Dr. Goodman was not accepting new patients.

[hholmes13]

I have no experience with that doctor. I see Dr. Fealey here in Rochester. He specializes in autonomic dysfunction, but I'm not sure if he deals with pediatric patients. Although your son isn't super young so that may not matter. He has been really great so far with me though. He spent almost 2 hours with me in my first appointment. If the other doctor doesn't work out, I've had a good experience with him. Most of the people I've seen here have been pretty good though. The majority of the complaints I've had were with Family Medicine, but they aren't really too knowledgeable about autonomic stuff so that's not surprising. Good luck with your appointment! I hope it works out well for you guys.

Just saw that I aimed part of this at the wrong post...sorry, I meant to write about your daughter, not son.

[kjd111]

Thank you so much everyone for your replies. I knew i had read some mixed reviews somewhere about Dr Renaud, so that was why i was asking. We are going to go we have decided. The only good news is that we have our autonomic dysfunction diagnosis and treatment regime already. I think i might be more worried if we were going up there and hadn't. Its the issues she continues to have with just using her brain for things like the computer or TV or studying that then turns around and makes all the autonomic stuff so much worse. I'm not sure what can be done about something like that 3 years after the injury - my guess is probably not much - but i'm willing to try for her sake. Because we have a treatment plan that works fairly well, we feel so blessed to be where we are.

[kclynn]

Is it the movement or the mental change in activity. My son always had symptoms like jerks last winter for example when he was watching TV then he would look up to talk to you.

It is always worth it to see if you make things even a little better. Good Luck!

[arizona girl]

Someone wrote recently Dr. Goodman was not accepting new patients.

I just tried to find the post that he isn't accepting new patients. I didn't see anything back to april, I did see though that he doesn't accept pediactric patients. So maybe that was it. He just moved his practice to scottsdale mayo this year, so I think he would still be seeing patients. I'm seeing docs out there right now for CVID and gastro problems. I already see a neuro in phoenix, but was thinking I should see goodman too. I'll let you know if I have a problem getting an appointment. It might be a bit though I'm waiting for lab results and f/up appointments.

[arizona girl]

Someone wrote recently Dr. Goodman was not accepting new patients.

I just tried to find the post that he isn't accepting new patients. I didn't see anything back to april, I did see though that he doesn't accept pediactric patients. So maybe that was it. He just moved his practice to scottsdale mayo this year, so I think he would still be seeing patients. I'm seeing docs out there right now for CVID and gastro problems. I already see a neuro in phoenix, but was thinking I should see goodman too. I'll let you know if I have a problem getting an appointment. It might be a bit though I'm waiting for lab results and f/up appointments.

[kclynn]

Someone wrote recently Dr. Goodman was not accepting new patients.

I just tried to find the post that he isn't accepting new patients. I didn't see anything back to april, I did see though that he doesn't accept pediactric patients. So maybe that was it. He just moved his practice to scottsdale mayo this year, so I think he would still be seeing patients. I'm seeing docs out there right now for CVID and gastro problems. I already see a neuro in phoenix, but was thinking I should see goodman too. I'll let you know if I have a problem getting an appointment. It might be a bit though I'm waiting for lab results and f/up appointments.

Thanks for clearing this up. My son is 15 so that is probably why it stuck in my mind.