Dr. Tanya(?) Murphy

[Megs_Mom]

Great job Stephanie! You are working every angle on this, and you should be very proud of your results. I cannot wait to hear about this appt - there is not a ton of current feedback on her therapy recommendations.

 

You are WAY far ahead of where we were when we called her - we were just at the point of trying (again) to figure out if she had PANDAS, so we were likely not nearly aggressive enough at the time. Then we found Dr. L & a local neurologist, and the panic stage passed, for now at least.

 

Good luck - and we'll all be waiting on the update!!

 

Well, I had some luck today with Dr. Murphy's office. I spoke to the receptionist and she asked me lots of questions about who dx'd my son, what treatments have worked, what his pandas symptoms are, etc... She said that they were now booking for Jan, but since my son sounds kind of extreme she said she was going to speak to Dr. Murphy. A few hours later, she called back and said that Dr. Murphy wants to get us in soon, so they gave me an appt for Nov. 4, only 10 days away! After all the roadblocks I have run into in the past couple months, it was nice to have a door open up for me!! So excited!

 

Meg's mom, I can't believe that there was a 5 month wait for you! Maybe something about our situation got us in sooner (the more severe symptoms, rages, etc...).

 

Stephanie

[thereishope]

When that happens, do you notice a virus, allergies, anything? Or whether it may have coincided with spring cleaning, dusting...anything? Like with my son, if it's virus or allergies, he improves w/o antibiotics and comes and goes quickly. Only the strep induced ones are over the top bad w/ a lengthy recovery.

 

 

plus the fact that he doesnt require antibiotics to improve from the mysterious waxings that have come and gone quickly over the approx 10 years we have been dealing with this

[michele]

Hi. We did fly from OH to Dr. Murphy in Gainsville two years ago. She was very informative. She did write up a report right while we talked in the office for me to take to my hometown Dr's. She diagnosed him with suspected PANDAS. She suggested OT evaluation for motor delays, ADHD meds like Ritalin for behaviors if they worsened, Clonidine or Tenex for tics for the TS symptoms, Pen VK or Amoxcillin during flare ups (not long term), to stop the DAN ! protocol which was Actos at the time and GF CF diet and supplements. She suggested to leave tonsils in place. We did not get any scripts from her because we live out of state. Maybe she has changed her protocol so please keep us informed of her suggestions. I did email her since and she always wrote back. She was well informed on the latest Sweedo research on PANDAS. I am still waiting on the Latimer report and have not gotten my emails followed up either. I realize she is busy but we need a response. She could turn patients away if she didn't have the time to treat them. We paid out of pocket to see her and drove 6 hours each way. I think if his was more clear cut and she saw more chorea movements and not so much compulsions she would have proceeded with us. She felt he had alot of anxiety. Anyone else hear this from her about the anxiety being the primary issue?

[Stephanie2]

She told you to stop the DAN protocol?! Did you stop it? I will never stop the DAN protocol in my sons. They have been so much healthier and we are not even finished with it! I am disappointed to hear of all the psych meds that she prescribes, but I guess ultimately it will be my choice. I just need the abx and I hope she is willing to prescribe long-term...

 

Stephanie

 

 

Hi. We did fly from OH to Dr. Murphy in Gainsville two years ago. She was very informative. She did write up a report right while we talked in the office for me to take to my hometown Dr's. She diagnosed him with suspected PANDAS. She suggested OT evaluation for motor delays, ADHD meds like Ritalin for behaviors if they worsened, Clonidine or Tenex for tics for the TS symptoms, Pen VK or Amoxcillin during flare ups (not long term), to stop the DAN ! protocol which was Actos at the time and GF CF diet and supplements. She suggested to leave tonsils in place. We did not get any scripts from her because we live out of state. Maybe she has changed her protocol so please keep us informed of her suggestions. I did email her since and she always wrote back. She was well informed on the latest Sweedo research on PANDAS. I am still waiting on the Latimer report and have not gotten my emails followed up either. I realize she is busy but we need a response. She could turn patients away if she didn't have the time to treat them. We paid out of pocket to see her and drove 6 hours each way. I think if his was more clear cut and she saw more chorea movements and not so much compulsions she would have proceeded with us. She felt he had alot of anxiety. Anyone else hear this from her about the anxiety being the primary issue?

[cory2605]

As some of you know I have hit a roadblock with Latimer and I am scrambling to get some backup appts scheduled. I am in Florida, so the next logical thing for me to do is try Dr. Murphy. Has anyone seen her and what was your experience/treatment plan? Does anyone have her contact info?

 

Stephanie

 

Hi Stephanie,

 

I contacted Dr. Murphy as I live in Florida also. They are just starting a study for possible Pandas kids and we are going to be doing this. If you look up 'Rothman Center' or Dr. Tanya Murphy you will find the number or email information. I emailed them and explained my son's situation (titers were normal) and the sudden onset of symptoms and this qualified him for the study. The website will actually the USF website. To the left of the web page you will see several options and one of them is 'studies'. Click on that and you will see all the different studies they have ongoing and you will also see the one I am referring to......it will say something like 'sudden onset of Pediatric OCD/Tourette like symptoms' and treatment with antibiotics. Let me know if you can't find it. They called me back withing a day or two.

 

Sincerely,

 

Trish