Friend's son at Boston Children's

[laure]

Experts out there, please chime in. Friend's son 11, history of being oppositional and frequently fatigued, but very bright and quite capable physically when he is up for it. Frequent strep infections all his life. Last year doctor put him on ritalin for impulsive and oppositional behavioral issues. Some improvement. Then November overnight onset of facial and shoulder tics, during some episodes he would pass out. Rush to hospital, who diagnosed tourettes. New doctor (neurologist) in Boston thinks fainting is psychosomatic during a tic episode. PANDAS or Lyme has not been explored. This boy is an outdoor boy who visits Cape Cod, Westchester County, South Carolina, and lives in the woods in the Northeast. Plenty of tick bites in his past, including one this past summer which became infected and he was put on 10 days of augmentin. I have lobbied a bit to check for lyme, but who am I compared to Boston's Children's docs?! Has anyone else experienced fainting spells during tic episodes?

[tpotter]

Experts out there, please chime in. Friend's son 11, history of being oppositional and frequently fatigued, but very bright and quite capable physically when he is up for it. Frequent strep infections all his life. Last year doctor put him on ritalin for impulsive and oppositional behavioral issues. Some improvement. Then November overnight onset of facial and shoulder tics, during some episodes he would pass out. Rush to hospital, who diagnosed tourettes. New doctor (neurologist) in Boston thinks fainting is psychosomatic during a tic episode. PANDAS or Lyme has not been explored. This boy is an outdoor boy who visits Cape Cod, Westchester County, South Carolina, and lives in the woods in the Northeast. Plenty of tick bites in his past, including one this past summer which became infected and he was put on 10 days of augmentin. I have lobbied a bit to check for lyme, but who am I compared to Boston's Children's docs?! Has anyone else experienced fainting spells during tic episodes?

 

 

Based on his history, he should see a LLMD, as well as have full testing for strep (ASO, AntidnaseB, Streptozyme.) They should see LLMD and PANDAS specialist, and do it soon. Personally, we found that the psychotropic drugs that DS got before we figured out Lyme and PANDAS were doing a doozy on him (and trust me, we've been told it was psychosomatic, too.)

[NancyD]

I would agree with finding a good LLMD fast! He won't get that help at CHB. This is NOT their specialty. My DD spent two weeks there and it was a nightmare! She was finally diagnosed with Lyme and Bartonella months later and got the proper treatment but we have to travel to NY from the Boston area.

[KaraM]

Has anyone seen Dr. Robert Sundel at CHB?

 

Our pediatrician recommended we see him after our dd was diagnosed with Lyme. He (our pediatrician) recognizes our dd's autoimmune isses (but doesn't really feel comfortable treating himself). He siad Dr. Sundel directs an autoimmune center at Children's and is well regarded in terms of Lyme Disease evaluations and autoimmune disease evaluations in general. (By whom he is well regarded, I'm not sure, either, and there are two very distinct camps when it comes to Lyme).

 

We never went to see him. Having heard negative things about CHB with regards to PANDAS, etc., we just went for Dr. J instead. But since your friends son is already there, maybe it would be worth a shot to see this doctor.

 

If anyone has seen him, please pm the original poster and me if you don't think it makes sense. If you think he's good, by all means let us all know!

 

Kara

[lismom]

Some of my sons first symptoms were facial tics and periodic fainting spells. Thought PANDAS, 2 years later lyme. Vacations in Cape Cod and Nantucket.

Edited December 26, 2011 by lismom

[laure]

Some of my sons first symptoms were facial tics and periodic fainting spells. Thought PANDAS, 2 years later lyme. Vacations in Cape Cod and Nantucket.

 

 

Lismom,

What causes the fainting, do you know? Thanks!

[lismom]

Some of my sons first symptoms were facial tics and periodic fainting spells. Thought PANDAS, 2 years later lyme. Vacations in Cape Cod and Nantucket.

 

 

Lismom,

What causes the fainting, do you know? Thanks!

 

 

For my son I believe his blood pressure was low. Before I knew it was lyme/bart this was a piece of the puzzle that just didn't fit PANDAS. He hasn't had this prob since treatment. I know though that lyme can deplete minerals/vitamins and cause low blood sugar.