Dr. T. or B?

[cdnmom]

So I am scheduled to see Dr. B. in Sep for my ds8 (we are from Canada)......it took me a few weeks to decide which doctor would be the best suited for our situation. I chose Dr. B. since I am aware he does a good workup on what could be possibly going on with his patients. I have since then, been hearing that he is not very good with long distance follow-ups.....and I have been hearing that Dr. T. is good at responding to e-mails, phone consults, etc. I was hoping for some feedback.....this trip will be very expensive for me and I really don't want to have to do it again with a different doc in order to receive the proper long term, long distance care. Any ideas?

 

Diane

[minimaxwell]

My vote is for Dr. T. When I began on this journey I spoke with Dianna Pohlman, founder of PANDAS Network. I was on the fence as well. She convinced me to see Dr. T and it was the BEST decision I have ever made. He leaves no stone unturned and does not stop thinking of these kids. He sends me emails at all hours of the night forwarding me information. Dr. Jenike and Dr. Geller highly respect him and he consults on some of their patients. He is the most caring doctor I have ever met. Feel free to tell him I sent you. I will be spending the next 2 days with him, let me know if you want me to give him a heads up about your situation.-Tiffani

[colleendonny]

I have not seen Dr. T. We see Dr. B and really like him. I think he is the most aggressive with treatments, so that is something you may want to consider. To have follow ups with him, you pay for a phone consult, which is $125 for 15 minutes, not covered by insurance. Or you could see him, which would obviously be difficult for you to do so.

 

You could always add in a doc in your area to work with as well. Maybe a DAN or an integrative physician. Good luck in your decision.

[junkyardjean]

I am from Canada as well, and one of the dr's we initially made contact with was Dr. T. He was super nice on the phone and talked to me at length - asked me to send dd's information, which I did. Unfortunately, I have not heard from him at all since April after the initial conversation. I called and left a couple of messages, and emailed a few times - but nothing. He really seemed fantastic, I know he is super busy, but I feel like a response of some kind would have been nice (even if it was to let us know to leave him alone ) His bedside manner on the phone was suberb though...

[ptcgirl]

I also have a close friend that was completely disregarded by Dr. T. He just stopped responding and wouldn't return calls, emails, etc. Dr. B is good with communication if you do phone consults. Otherwise, I think he is overloaded with patients and it is difficult to make contact.

[tpotter]

PM'd you.

[Tracie]

We went to Dr.K

he did ivig twice on our DD and she is doing great

[airial95]

Full disclosure, We just recently started seeing Dr.B. But we have also been a patient of Dr. M in Florida for 2 years - she was local for us, and did very well by us as well. In our case, we choose Dr. M as our first specialist primarily because she's in our hometown area...it was easy. When we were finally faced with having to get another consult (with Dr. M's agreement), we looked at ALL of them, and what their specialty was - immunology, neurology, etc... In our case, our son responds well to abx, but has had 20+ positive cultures in 2 years, with the longest stint off abx being 5 weeks. We've been to immunology and infectious disease locally and they coudln't help. But while we have tics - neurology hasn't been our biggest concern.

 

We personally felt we would be better served by an immunologist who specialized in PANDAS than the other specialties. We have our follow up in 2 weeks - so can't really say how our decision is working out...but I did like how he approached our case/records etc.

 

Just thought our methodology would help in your decision process.

[Kiera]

I agree completely with arial! Each Pandas expert approaches it from a different perspective and unfortunately not one comes in the complete package!! I have seen Dr K (big fan of IVIG for most pandas cases) and Dr B. You also have to consider how quickly access is and wait times for apps and IVIG (if you think this may be necessary). Dr B doesn't do psych drugs, Dr T will order if necessary, he's a phD in neuropharmacology! (Don't think Dr K will do psych drugs either). So alot depends on your child's severity right now and how much of a hurry you're in, and in what area you need most help. Dr B does do a good work-up though as I believe Dr T does too (but I haven't seen him...yet!!!). They all have their strenghts!

[cdnmom]

Thank you all, I have a phone consult with Dr. T. this Thursday (boy that was quick), I just called today. I will still keep my appt with Dr. B. in Sep, just in case. Appreciate everyone's input. I hope to one day be as helpful as all of you.

 

Diane

[beeskneesmommy]

I agree w/Kiera. We have a team of 3 PANDAS specialists across the country. Dr. B is the furthest to travel but at this time is the primary. We chose him for several reasons: 1. his aggressive strategy toward treatment, when appropriate and necessary; 2. his thorough testing choices; 3. his staff's willingness to work hard with insurance companies; 4. he has a transfusion center on premesis. Dr. B has taken us very far in ther threatment of our son. he has, in essence, been instrumental in saving our son's life.

 

With regard to availability for appointments and communication, every excellent PANDAS specialist has a long wait for an initial consult at this point, for obvious reasons. We have had good communication with Dr. B because we initiate it and take responsibility for making it happen. We make appointments for phone consults every 4 weeks and we find a way to pay for them. This way, familiararity is promoted, we never go more than a month without speaking with him and he is able to keep very good documentation regarding our son's progress.

 

We do not discount other specialists, in fact, we see 2 of them regularly. However, we chose Dr. B as the primary because it is a good fit for us. We aggressively attack the problem and we are having execllent results, although we have a ways to go to cross the finish line