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Hi Gibster,

I was wondering if you could comment more on the doctor wanting to get an ultrasound on your child's heart to look for strep. There have been many times I KNOW my children had strep, but thoat cultures were negative. I have always thought that the strep could be hiding in their adenoids or sinuses, but never heard of it being in their heart. Is this in relation to how strep antibodies attack the cardiac valves such as with rheumatic fever? Anything you could add about that I would REALLY appreciate as I am constantly trying to find liitle pieces to this very confusing disorder, as we all are. Thanks!

Colleen

 

Sure, she said that strep could attack the cardiac valves (like rheumatic fever) or there could actually be "strep vegetation" hanging off the valve. Typically people with these issues have other symptoms like high fever -- but she just wants to cover the basis. She said that the only reason to treat a strep carrier with antibiotics is if the heart was involved also.

 

He is going in next month for the echo.

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She said that the only reason to treat a strep carrier with antibiotics is if the heart was involved also.

 

He is going in next month for the echo.

 

Hi Gibster,

 

Hmmmm...well there are actually other reasons to treat strep carriers. Two that I can think of off hand are:

1) the strep carrier is making other family members sick (esp. if they have PANDAS, ARF, repeated strep infections)

2) the strep carrier has PANDAS (oops! forgot this doc is a "non-believer" :wacko: )

 

The assumption that the carrier state is benign is starting to be questioned by some strep experts. The medical community doesn't really understand why some people are strep carriers and what that impact might have.

 

Our dd who has PANDAS would problably be considered a "strep carrier" by some. Her FEVER/onset of behavior changes was 1/08 and she cultured positive 2 mo. later. Her sister is also a strep carrier. I think it is a big mistake to assume that strep carriers don't get PANDAS and that the strep carrier state is inherently benign.

 

You might find this article interesting (including the comment about strep carriers/OCD/tourettes) http://www.umdnj.edu/umcweb/marketing_and_...fall2005/11.htm

 

Also, I'm curious....what happened to your son on the Azith? How long was he on it? I know you said his symptoms got worse on it, any deatails? I bummed it didn't help.

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She said that the only reason to treat a strep carrier with antibiotics is if the heart was involved also.

 

He is going in next month for the echo.

 

Hi Gibster,

 

Hmmmm...well there are actually other reasons to treat strep carriers. Two that I can think of off hand are:

1) the strep carrier is making other family members sick (esp. if they have PANDAS, ARF, repeated strep infections)

2) the strep carrier has PANDAS (oops! forgot this doc is a "non-believer" <_< )

 

The assumption that the carrier state is benign is starting to be questioned by some strep experts. The medical community doesn't really understand why some people are strep carriers and what that impact might have.

 

Our dd who has PANDAS would problably be considered a "strep carrier" by some. Her FEVER/onset of behavior changes was 1/08 and she cultured positive 2 mo. later. Her sister is also a strep carrier. I think it is a big mistake to assume that strep carriers don't get PANDAS and that the strep carrier state is inherently benign.

 

You might find this article interesting (including the comment about strep carriers/OCD/tourettes) http://www.umdnj.edu/umcweb/marketing_and_...fall2005/11.htm

 

Also, I'm curious....what happened to your son on the Azith? How long was he on it? I know you said his symptoms got worse on it, any deatails? I bummed it didn't help.

 

I am not going to just dismiss his original PANDAs diagnosis because we ran into a non-believer doctor. But at this time, he has never had strep throat and we have had only 2 cases of strep in the family (one throat, one anal) in the 8 years of having kids. He doesn't seem to give it to his siblings......nor does anyone else give it to them. How weird is that?

 

But you do raise a good question which I have no answer to and am exploring more. If the strep is causing his tics (which I believe) then is there damage being done? Is there brain inflammation? What are the adverse affects of not treating his strep and just treating his tic/insomnia/attention issues? I have no answers to that. But am open to hearing what anyone has to say.

 

He was treated with Azith last spring. Usually how this goes with him is that he starts with the tic, we get antibiotics and the tic goes away within a few days. Last strep season he was on a daily dose of amox. He got the tic while on amox so we did Azith and it went away, returned to the daily dose of Amox. In late spring 08 he once again began to tic through the amox. At that time we met with an ENT to discuss tonsillectomy and he stopped ticing on his own (strep season ended). This winter when the tic showed up again we started on the amox with no change (full 10 day course). Then we did the Azith without improvement. I don't know if it was because of the Azith or not but during his Azith round his symptoms worsened. They did not worsen during the amox, it just didn't help. During the Azith cycle his tic became much more frequent and much more pronounced. He was in almost a constant state of ticing. His insomnia worsened and the attention issue was out of control.

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Gibster,

 

Your child's symptoms sound very much like my sons. If you cut and past this link below it will take you to this very interesting journal publication.

 

Btw, my sons tics start up if he is around anyone who has a viral infection, it doesn't have to be strep.

 

Linda

 

Challenges in the Identification and Treatment of PANDAS: A Case Series -- Mabrouk and Eapen, 10.1093/tropej/fmn039 -- Journa.

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Hi,

I can only speak form our experience-- Rheumatology has been the discipline that gets it. He explained to us that our son has the equivalent of Rheumatic fever and that he needs long term antibiotic prophylaxis possibly up to age 18!! We missed a couple of doses and it seems like the tic came back-- although today he is much better-

 

My recommendation is find an MD that will do prophlyactic antibiotics and watch the titres over time and try to correlate behavior to labs

 

Good luck

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I agree with CWmom...the ped. rhuematologist we saw didn't seem afraid of saying we could do 250mg/day Azith. long term (like our ped was.) She seemed to realize that the sequlae of not doing the antibiotics was serious (mental illness, possible brain damage) enough to warrant treating this like ARF. She called PANDAS "rheumatic fever of the brain".

 

Gibster...did you say where you are from? Some areas have more problems with Azith. resistance than others. How long was your son on Azith for?

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I agree with CWmom...the ped. rhuematologist we saw didn't seem afraid of saying we could do 250mg/day Azith. long term (like our ped was.) She seemed to realize that the sequlae of not doing the antibiotics was serious (mental illness, possible brain damage) enough to warrant treating this like ARF. She called PANDAS "rheumatic fever of the brain".

 

Gibster...did you say where you are from? Some areas have more problems with Azith. resistance than others. How long was your son on Azith for?

 

We are in Colorado. He did fine on Azith last spring that is why we went with it again a few weeks ago. Just didn't work at all. He was on it for 10 days (after 10 days of Amoxicillin) when we finally got to the neurologist.

 

The ped. rheumatologist is a great idea.

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