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MakeMineTea

My son had a tonsillectomy/adenoidectomy June/09

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I hope you gals can bear with me on all these posts...

 

My son had his tonsils removed in June of '09. He has not had strep throat since (that is why I'm asking questions about strep in the sinuses and strep in the eye (pink eye)....in other posts.

 

Having said that...I'm wondering if any of you have any experience with this and if any doctors have used that as a "it can't be PANDAS" excuse? Though the neuro we saw last week does believe in and treat PANDAS...she tried to derail me a bit by stating that he "CAN'T" get strep w/o tolsils/adenoids...to which I had to remain calm and point out that I had been told otherwise by his ENT...and she recanted her statement a bit.

 

Any advice on how to broach that one with docs? Also...anyone here whose child also had them removed and continue to have strep infections and PANDAS? Anyone else here have their child tested for strep by swabbing the sinuses? Or any other swab and/or test other than blood tests?

 

Thanks! G

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My son had strep a month after having his tonsils out. If a dr tells you a child cannot get strep without tonsils, find a new doctor.

 

T and a is suppose to reduce the chances of getting strep, but it is not 100% effective, nothing is. On this forum, you have a mix of people. Those who children did fine with t and a and it did help reduce the number of infections. You then have those who continued to have chronic strep. And you have those who had an exacerbation shortly after surgery (possibly due to being exposed during surgery or through damaged tissue).

 

Strep can also be in many more places than the throat. Ear infections, sinuses, gut, skin, anal and vaginal. You can also have strep throat with negative rapids, negative cultures, and titers that fall in normal range. It's a nasty, sneaky bacteria.

Edited by Vickie

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my son had his tonsil out almost 2 years ago. it did help curb the chronic strep infections, but last winter we still had several ear & sinus infections. they didn't respond to amoxicillan at all & omnicef only cleared the ear. i wonder if he had strep in the sinuses (we never cultured) because his doctor figured we'd treat it with abx anyway. once we started biaxin he cleared up right away & has been infection free since february.

 

we are currently looking for a new doctor because i want someone who is willing to think outside the box & is interested in solving the PANDAS puzzle for my son.

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Tea- I hope that your son is doing well post-tonsillectomy and I hope it decreasese his rate of strep throat. Reducing the rate of strep throat will reduce the frequency of exacerbations. However, it does not cure PANDAS. I thought it would. My son had his tonsils out in 2004 and did very well after that. When he had an OCD exacerbation a couple years later the neurologist told me it could not be PANDAS becuase he did not have strep throat. What I did not know at the time was that he probably had mycoplasma. This past year, when he had another exacerbation, the neurlogist told me again that it could not be PANDAS because he did not have strep throat. This time we found a PANDAS specialist who searched for an infection and found an infected cyst in his sinuses.

 

PANDAS becomes PITANDS for many children and they then react to ANY inflammation and infection, not just strep. Read the 1995 article by Allen and Swedo about PITANDs. The kids in that study had viruses and bacterial infections - not just strep. Most PANDAS nonprofit websites clearly state that kids can have exacerbations with triggers other than strep. The NIMH held a meeting this past summer and discussed that very issue as well, and we are expecting a "white paper" (pre-guidelines) to be published soon - I am hoping it clearly addresses the "other than strep" issue!

 

Best wishes to you-

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The way our doctor explained it was that once the tonsils are infected they become an absess (sp?), and they block the antibiotics from going any further. So while it doesn't "cure" PANDAS, it makes treatment more effective (supposedly).

 

Isabel

(who is thinking of getting her own tonsils out!)

Edited by mati's mom

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