How to pick a PANDAS "Expert"

[Kiera]

A question for all the experienced pandas parents who have seen one of the following experts :

 

Dr K, IL

Dr B, CT

Dr L, CT

Dr T, NJ

Dr N, NJ

Dr L, MD

Dr M, FL

 

1) Is this the complete list of pandas Drs (that actually see pts)that would be considered experts?

 

2) When choosing to take that next step, to actually fly cross country to seek expert opinion, setting aside location (have to fly regardless), what influenced your decision in choosing a Dr, given that they came from varied disiplines - pschy, neurology, immunology, pediatrics?

 

3) I'm leaning toward one expert but would value more input. I'm looking for the most broad-based Dr, willing to look at all angles and not afraid to move on to something else, if plan A doesn't work.

 

4) Finally, how does it all actually work? Blood work done in office or recs given for home state lab? Scrips out of state? Does insurance have a problem with out of state Drs? Do you need a local, colaborating Dr to work with (or the opposite, do most prefer to be completely in charge - thus frequent cross country flights!) etc, etc

 

Any and all insight is appreciated, thanks so much in advance!

[LaurenK]

You could add Dr. Hollander in New York. He is opening and IVIG infusion center later this year.

[EAMom]

Dr. N in NJ is on Beth's Maloney's list, but is purposefully NOT on the latitudes list. I wouldn't consider her a PANDAS expert on the level of the other docs.

[EAMom]

Ps I'm assuming this was the Dr. N. In NJ that was in a certain book, and not someone else?

[kimballot]

First off, let me say that we have worked with 3 of the doctors on your list over the past 2 years, so I am not pushing for one particular doctor -

 

If I were looking for my first appointment with a PANDAS doc today, I would take the following into consideration( not necessarily in this order!):

 

1. Specialty of the physician - and how does that fit with my child? For example, if my child tended to have OCD as a primary concern I might lean toward a psychiatrist... Tics- a neurologist, and chronic infection/ illness - an immunologist.

 

2. Treatment breadth - does the doctor tend to start out conservative (antibiotics), but move to more aggressive treatments (steroids, PEX, IVIG) if needed.

 

3. Availability - does the doctor see patients full time and have a good reputation for returning phone calls when there are problems and such. Does the doctor have office staff to help with billing and such.

 

4. Insurance - Does that doctor take my insurance?

 

Regarding blood work - Some doctors will send a list of suggested labs, which your pediatrician or other local doctor could then order. Some docs are hesitant to order or suggest labs until your child is an established patient - and that means a face-to-face visit.

 

If you have narrowed the list down to one or two doctors, you could post which one's you are considering and ask folks to send you a PM with their experience. That should help too.

 

Good luck!

[T_Mom]

There are other Ps treating doctors -- CA for example, and Seattle...and others.

 

I think you need to go to someone that is knowledgeable and working with Ps (period) and is the closest to you--

 

Be willing to try the next doctor on your list if the one you sought out is not helping.

[airial95]

Cost is always an issue - so as much as I'd like to list other things to consider first - I looked at what doctors were covered by my insurance. Many insurances don't cover IVIG, PEX, etc...so if you can save some $$ by choosing a PANDAS expert that is covered - it's a step in the direction AWAY from total PANDAS related financial ruin!

 

I like kimballot's list of suggestions, especially the first one - depending on your childs symptomology - choosing a specialist with that area of expertise is alwasy a bonus.

 

The one thing I would also remember is that as these doctors have continued to practice over the years, some of their points of view and approaches have changed.

 

I can't speak for all of the doctors on that list but my son sees Dr. M in FL (she's local for us - so it was a no brainer). Other folks who have seen her in the past have noted that she's anti T&A and won't do IVIG. This may have been the case in the past, but she recommended T&A for my son based on his history, and she works with an immunologist at the hospital she's affliated with to do IVIG. When others have seen her in the past - her position on these things may have been different than they are now.

 

This may go for other doctors too. As they learn more, see more kids, etc. their philosophies may change - so it's important to try to get opinions from folks that are current patients of anyone you're considering - to get the most up to date pros AND cons.

 

If you'd like more specific info on Dr. M - feel free to PM me, both of my PANDAS kids see her regularly (every 2-3 months).

[oivay]

Another thing to consider is how your child will hold up during travel.

There was no way I could have taken my daughter on a plane when she was in the middle of severe chorea, and I didn't think I could drive her 4 or 5 hours either.