Dr. Murphy

[Tattoomom]

Those of you who see Dr. Tanya Murphy, can you give me an idea of how it works at her clinic? How long are the appointments? How often do you go? What does she do? Etc....

[MomtoJake]

Those of you who see Dr. Tanya Murphy, can you give me an idea of how it works at her clinic? How long are the appointments? How often do you go? What does she do? Etc....

 

 

I will be happy to fill you in on our experience there. Our first appointment was about 4 hours long. We had filled out a lot of paperwork prior to the appointment. We were first seen by one of the fellows, in our case Dr. Brown, who was accompanied by another Dr. My DS also was seen by OT, Speech and Neurology at her office at the same appointment. About the middle of the appointment Dr. Murphy came in to see my son and talk to us. It was apparent that not only were all of them familiar with my paperwork but they had memorized it, complete with past labs. They had watched all of the videos that I sent. Then the all pow wowed for a bit and then we all met again to go over conclusions and recommendations. We got orders for lots of lab work etc. Subsequent appointments were monthly while we were on ABX and lasted 45 min to 1 hour. Those were with the fellows and with Dr. M coming in at various times. She also is able to refer out for specific issues for providers at USF that she trusts and are familiar with PANDAS/PANS- allergy/immunology etc.

 

Now we go every 3 months and the appointments are about the same length. We now have a new fellow, Dr. Obergon and he is great. They are wonderful about responding to emails and phone calls pretty much 24 hours later. As a matter of fact, we are dealing with Myco P at the moment and are in a pretty difficult flare- and I got 3 calls from their office today, one with a message from Dr. M, even tho she is in California at the conference, one from the nurse and Dr. O called and gave me some recommendations by phone tonight. We feel so lucky to have them on our team! I feel they really care. The office is really low key, and the staff is very friendly. If you have specific questions feel free to PM.

[airial95]

We has been patients at Rothman since July 2010. Our experiences have been similar to momtojakes, first appointment was several hours and our son had several assessments done that day to evaluate other needs (OT, etc...) follow up appointments were monthly for a while and then every 3 months. We live in Tampa, so it's local, so I'm not sure how she handles out of towners on follow ups.

 

We have seen Dr. Brown as well as Dr. Toufexis (she's my son's favorite!!) When we had our first appointment with our daughter in January, it was much quicker because she didn't need any of the detailed assessments my son did because of her presentation of symptoms - plus, they also had all of the family history down.

 

I agree with momtojakes assessment on how thorough they are with the records, etc. They know your case when you walk in, and that's helpful. We also have had similar experiences with their responsiveness to email and such - typically within 24 hours.

 

We have also gone in the past, (and are starting again next week) for behavior therapy out there. It has been wonderful, they understand the ups and downs of the PANDAS kids and helped us work with moving targets.

 

Right now, we don't see Dr. Murphy or Dr. Toufexis regularly anymore for either of our kids. After our 3 month follow up from our initial consult with my daughter, they have left her care in the hands of our pediatrician to treat the PANDAS because they support the approach he takes with her (she's mild, is symptom free after 30 day course of abx when she gets strep) and only need to see her if things take a nasty turn (knock on wood!!).

 

As for our son, after seeing them for close to two years, Dr. M and Dr. Toufexis admitted that my son's case has been more challenging to them. He is classic PANDAS, however, our issue is chronic re-infection (20+ positive strep cultures in 2 years). None of his bloodwork indicates any immune deficiencies or reasons for the chronic infections. They sent us to an immunologist at All Childrens (great because she was familiar with PANDAS - and eventhough she found no underlying immune reasons - other than straight PANDAS - for IVIG said she would write the order for Dr. M if that's the direction we all decided was best to treat the PANDAS), who couldn't find anything, and she also sent us to an infectious disease specialist at USF, that was the only doc I haven't liked in my experiences with USF (and I'm an alumni there - so it pains me to say it!) - she just didn't really seem to be searching for the reason behind the chronic infection. She just gave him a course of rifampin to try to clear underlying strep and wanted follow ups every 2-3 months. She wanted him off ALL abx, and lo and behold, the second we did that - my son tested positive for strep. When we followed up with her after the ped put him back on abx, she wanted him only on a short course (less than the standard 30 days my ped always gives as a start for his PANDAS kids) and then off completely. NOT an option for my son with his strep history - needless to say, I never scheduled our 4th follow up. Sorry - I digress.

 

Anyway, after their immunologist was a bust and they referred us out to ID, they also recommended that we consider getting another PANDAS specialist on board, and Dr. Toufexis even discussed with us openly the various options available to us - she was familiar with all the big names, and helped us weigh our choices. Personally, I was very impressed that they openly admitted that we needed another outside opion - it's not something you see with a lot of doctors.

 

They still ask for updates on both kids, and I email Dr. Toufexis regularly and she keeps their records updated with all of the latest information, incase we do need to get in to see them. They have also said that they would be willing to work with whatever other expert we went to (we chose Dr. to assist us locally.

 

Let me know when you're out there - it looks like our regular therapy days may end up being Thursday afternoons - with back to back appointments, I'll be there a while!!