Top Tic & Movement Disorder Specialists?

[Rachel_S]

If you could go to any doctor in the country for help, who would you go to? After more than 2 years searching for a cause of the tics in my 10 year old daughter, I am coming to accept they just are part of who she is. They wax, they wane and they seem to be more problematic for me than for her. However, given that some of the testing we've done has uncovered some interesting things (high strep titers, food intolerance to dairy, gluten and shellfish) and a need for detox, none of the interventions have had an impact on the tics. The test results have made me wonder if there is something greater going on that drs with less tic and movement disorder experience just wouldn't look at. To be certain I've checked "under every rock" so to speak, I'd like to make one last ditch effort. I've seen all kinds of specialists (from an infectious disease specialist to a top neurologist in tic & movement disorders, both at Boston Children's) to top functional medicine/DAN practitioners, but have exhausted resources in my area (New England.) I'm willing to travel. I watched this list closely in the beginning, but have been away from it for a while so doctors names are not at my fingertips. Who would you suggest a person in my situation see and why? Any guidance is appreciated -- thanks!

[lismom]

It sounds like you know of most of the avenues that may effect the ticcing. My question would be, with each of these avenues how long did you stay with trying to resolve it. When my son first starting ticcing, only motor tics, we found he was allergic to certain things and ended up on allergy shots. Tics went into remission for years. Next time he started ticcing was after he got sick. He had strep, went undiagnosed because pediatrician said throat swab was negative. He ended up very ill with rheumatic fever. It took two months of antibiotics and his tics did go away. But, the problem is the strep triggered his immune system to now react to alot more than strep. He has been on continuous antibiotics for over a year.

 

Also, we tried topamax and that helped diminish the tics. Didn't take all away because of the underlying PANDAS issue but has helped. I have kept him on that.

 

And I have found that I have to keep his diet under control. If there is too much taxing the system, it makes it harder.

 

So, my son is dealing with more than one reason why he is ticcing. With us each attempt to resolve took time. He isn't 100%, but still trying. Kathy

[KileyAnn]

I've heard wonderful things about Dr. Woods. Here's his website

 

https://pantherfile.uwm.edu/dwoods/www/index.htm

[Rachel_S]

Thanks, Kathy!

 

It sounds like you know of most of the avenues that may effect the ticcing. My question would be, with each of these avenues how long did you stay with trying to resolve it. When my son first starting ticcing, only motor tics, we found he was allergic to certain things and ended up on allergy shots. Tics went into remission for years. Next time he started ticcing was after he got sick. He had strep, went undiagnosed because pediatrician said throat swab was negative. He ended up very ill with rheumatic fever. It took two months of antibiotics and his tics did go away. But, the problem is the strep triggered his immune system to now react to alot more than strep. He has been on continuous antibiotics for over a year.

 

Also, we tried topamax and that helped diminish the tics. Didn't take all away because of the underlying PANDAS issue but has helped. I have kept him on that.

 

And I have found that I have to keep his diet under control. If there is too much taxing the system, it makes it harder.

 

So, my son is dealing with more than one reason why he is ticcing. With us each attempt to resolve took time. He isn't 100%, but still trying. Kathy

[jackieann]

We were most impressed with Dr. James Leckman at the Yale Child Study Center.

[MichaelTampa]

You might consider having her checked for lyme (not just a regular doc checking off a test on the labcorp form, but a real expert in lyme who will consider clinical symptoms and tests to consider this possibility).