Good new- for a change

[dcmom]

Just wanted to let everyone know that a great, pandas knowledgeable doc is setting up his own practice in Northern NJ. We saw Dr T, he was very knowledgeable and helpful to us, and very compassionate.

 

A great things for those in the NY/PA/NJ area.

 

Eileen

[pandas2boys]

Thanks for the info! Do you know what his PANDAS protocol is?

[EAMom]

Here's a good article he wrote: http://www.ncbi.nlm.nih.gov/pubmed/16970875 (I haven't found a free full-text version available online).

 

Here's an article on Trifiletti (from 2005) http://www.umdnj.edu/umcweb/marketing_and_...fall2005/11.htm

 

I am a bit bummed b/c you folks out East already have Dr. Latimer, Dr. Leckman, and Dr. K (Chicago). When is a decent PANDAS doc going to set up shop on the West Coast?

[peglem]

Here's a good article he wrote: http://www.ncbi.nlm.nih.gov/pubmed/16970875 (I haven't found a free full-text version available online).

 

Here's an article on Trifiletti (from 2005) http://www.umdnj.edu/umcweb/marketing_and_...fall2005/11.htm

 

I am a bit bummed b/c you folks out East already have Dr. Latimer, Dr. Leckman, and Dr. K (Chicago). When is a decent PANDAS doc going to set up shop on the West Coast?

I second that!

[EAMom]

Our psychiatrist is great...but sadly many peds don't want to listen when she tells them their patients need to be on antibiotics, and IVIG/PEX isn't something she can just order up like a big name neurologist or immunologist can. (Techinically, she can write a rx for abs, and has for us b-4 the other docs where on board. Understandably, she prefers to have the peds cooperation on this matter. )

[melanie]

I want to add that we saw him. I was very happy with him but had some serious ,serious issues contacting him after he did testing and gave danny meds .I thought he was very knowlegable, proffessional and had a great bedside manner but as far as contacting him not good!! Maybe he was moving practices when we saw him

 

Melanie

[bronxmom2]

Thanks for posting, Eileen. I've been looking for him!

 

The other good thing is that, in his old practice anyway, he took insurance...

 

Is he prescribing prednisone and IVIG/PEX? We saw him in the springtime, and he did not seem ready to actually DO anything then. Though he was an interesting guy!

[dcmom]

I am not sure if he is taking insurance- possibly not. Unfortunately the trend seems to be that many specialists do not. In DC it is hard to even find a decent ped who takes insurance. That being said, the initial appt with my neurologist was $400, luckily my insurance covered half. The follow ups have only been around $100 which I will be reimbursed for part of. Also, one doesn't need to see a neurologist frequently. Maybe every 6 mos if you are only doing antibiotics, a few more times if you decide to do IVIG or Pex. Those treatments will be done by other docs.

 

I don't want to speak for any doctor, but I know he helped Julia by suggesting a change in her antibiotic from amox to zith, and letting us continue for almost a month, until we saw a huge improvement. He was very open with me regarding what is NOT known about pandas, and strep, in general.

 

I think the chief of Neurology at Morristown was not a pandas believer- maybe that is why he left, and/or why he didn't pursue other treatments while there. I know he plans to focus on pandas kids in the new practice, and he is very interested in the science of pandas.

 

It is a start, for those in the NJ area.

[Suzan]

I emailed him a few weeks ago and he responded saying that he could not advise me since we were not his patient but that if we had a local doctor who would like to talk to him about PANDAS he would be happy to do that.

 

Susan

[dcmom]

Just found out Dr. T will be up and running in a couple of weeks, so I thought I would bump this up. He is an amazing doc- those in NJ are lucky!

[sf_mom]

EAMom: I an appointment with Margo two days ago.... she has the ability to prescribe, she has hospital privileges, there is an outpatient clinic in Los Gatos that solely administers IVIG if needed, she has more medical training than the majority of Dr's out there. She seemed to be listening very closely, was heading to Chicago to see her parents and thought she might contact Dr. K. I'm just not sure why she couldn't prescribe IVIG and I know she was thinking the same.

 

There is hope!!!!!!!!!!!!!

[ajcire]

Oh that is great news that I am going to file away in case I need it!

[EAMom]

That is great! I also have no idea why she couldn't order IVIG...she is an MD after all. I don't know where it is written that only certain specialties (immunology) can order this.