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To those who have gone the tonsillectomy route


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This is probably an odd question because if our children were better, we wouldn't be on this forum, but I was wondering if there is anyone (or anyone you know of) that has gotten permanent improvement of PANDAS symptoms from a tonsillectomy. I read of one case on the internet, but was wondering if anyone on the forum has had this kind of success. Thanks!

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is the case you are talking about the one that was featured in the Washington Post last year around Sept or Oct. I don't believe that parent is on this forum but i think i remember someone who is on lives in the same neighborhood in Virginia. have you been in touch with them? i believe they had great success with tonsillectomy. if you don't get much response, you can try searching the forum from that time and contact. good luck.

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I have read on this forum that a lot of parents see much improvement after T&A. It reduces a huge microbial load. It seems that, according to my reading that one could get a flare in sxs after surgery and alot of times it's due to underlying Lyme or other chronic infections, anesthesia etc. Most parents say to continue prophylactic antibiotics some time after the removal. We too have our T&A scheduled August 27. I hope it makes a difference for your child.

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Dr. Jory Goodman, who write online articles for Psychology Today, reports good success doing T and A on adults he has diagnosed as having Pandas. Here is a link to one of his articles that describes some of his patients:

 

http://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment

 

I can't comment on our experience as we are just a month out from my DS's T and A. He feels it has made a change for the better.

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Three of my four children have had a T&A. It helped them a lot. My oldest went into complete remession for 18 months. She was not on any antibiotics for the 18 months after the T&A (we did not know at the time to keep her on antibiotics) and had a flare up when she got strep. My second and third children went into remission also, but not for as long. They remained on antibiotics though. My youngest was supposed to have a T&A in the spring, but then was diagnosed with Lyme...he will still get it done, just waiting. My opinion is that is is helpful even in kids who have "normal" looking tonsils. I would just caution to make sure they get antibiotics before, during, and afterwards. I think that is crucial.

 

Colleen

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Three of my four children have had a T&A. It helped them a lot. My oldest went into complete remession for 18 months. She was not on any antibiotics for the 18 months after the T&A (we did not know at the time to keep her on antibiotics) and had a flare up when she got strep. My second and third children went into remission also, but not for as long. They remained on antibiotics though. My youngest was supposed to have a T&A in the spring, but then was diagnosed with Lyme...he will still get it done, just waiting. My opinion is that is is helpful even in kids who have "normal" looking tonsils. I would just caution to make sure they get antibiotics before, during, and afterwards. I think that is crucial.

 

Colleen

 

Yes...that is a big dilema. My PANDAS dd's tonsils LOOK normal. I don't think anyone will take them out for us (in CA). But, I keep hearing about kids with normal looking tonsils that end up being quite diseased once removed.

 

BTW. Dr. Latimer is generally pro-tonsilectomy (even before doing IVIG). She says she cultures out a lot of drug resistant staph.

 

Dr. Murphy goes the other way, doesn't think T/A is generally helpful (but maybe she has some selection bias, the kids who are helped immensely with T/A never get referred to her in the first place?)

 

I have a friend from High School with a PANDAS kid...it seems that T/A really helped him. He's quite normal now (same age as my PANDAS dd). No IVIG/no long term abs. I don't think he was as severe as my dd is, but he definitely had PANDAS. He probably didn't have as many untreated strep infections as my dd did either.

 

My dd still has her tonsils. I wish I knew what to do! NOBODY has even suggested it to us (but we are not in the East with the PANDAS docs).

Edited by EAMom
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We did not see a permanent improvement from T&A - but it was a COMPLETE recovery for the short time that we had (he got another strep infoection 6 weeks later...ugh) so I would do it again in a heart beat. In fact the improvement was so drastic, we immediately scheduled T&A for my mild PANADS daughter within 3 weeks of our son's surgery.

 

We were a patient of Dr. M at the time, and I wouldn't say that she doesn't think that T&A isn't helpful, however, she doesn't see it as a permanent solution. She was completely on board with our T&A for both kids, however if I remember correctly, her take was she wouldn't recommend T&A JUST for PANDAS - without the history of recurring infections/flares.

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My son seems to have benefited from tonsillectomy. Since having them removed 11 months ago, he has improved significantly. He still flares with illness, but when he is healthy, he gets to a much better state then he ever got to prior to surgery. Also, his strep titers declined in the months following the surgery by 25%. That may not sound like that much, but they had remained rock steady through 2 1/2 years of agressive PANDAS treatments, PEX, mulitple IVIG's and constant antibioitics of various types. I graphed all his strep titer tests over the last three years and the drop after tonsillectomy is pronounced, and coincided with his improvements. He hasn't had his titers checked in a few months so we are hoping they continue to fall.

 

But it is defintiely no cure for PANDAS. As we have seen with my son, he still has the faulty immune response to illness and may always have it. Maybe we just removed a source of chonic immune response.

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My son seems to have benefited from tonsillectomy. Since having them removed 11 months ago, he has improved significantly. He still flares with illness, but when he is healthy, he gets to a much better state then he ever got to prior to surgery. Also, his strep titers declined in the months following the surgery by 25%. That may not sound like that much, but they had remained rock steady through 2 1/2 years of agressive PANDAS treatments, PEX, mulitple IVIG's and constant antibioitics of various types. I graphed all his strep titer tests over the last three years and the drop after tonsillectomy is pronounced, and coincided with his improvements. He hasn't had his titers checked in a few months so we are hoping they continue to fall.

 

But it is defintiely no cure for PANDAS. As we have seen with my son, he still has the faulty immune response to illness and may always have it. Maybe we just removed a source of chonic immune response.

 

did they culture your son's tonsils when they were removed?

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Three of my four children have had a T&A. It helped them a lot. My oldest went into complete remession for 18 months. She was not on any antibiotics for the 18 months after the T&A (we did not know at the time to keep her on antibiotics) and had a flare up when she got strep. My second and third children went into remission also, but not for as long. They remained on antibiotics though. My youngest was supposed to have a T&A in the spring, but then was diagnosed with Lyme...he will still get it done, just waiting. My opinion is that is is helpful even in kids who have "normal" looking tonsils. I would just caution to make sure they get antibiotics before, during, and afterwards. I think that is crucial.

 

Colleen

 

Yes...that is a big dilema. My PANDAS dd's tonsils LOOK normal. I don't think anyone will take them out for us (in CA). But, I keep hearing about kids with normal looking tonsils that end up being quite diseased once removed.

 

BTW. Dr. Latimer is generally pro-tonsilectomy (even before doing IVIG). She says she cultures out a lot of drug resistant staph.

 

Dr. Murphy goes the other way, doesn't think T/A is generally helpful (but maybe she has some selection bias, the kids who are helped immensely with T/A never get referred to her in the first place?)

 

I have a friend from High School with a PANDAS kid...it seems that T/A really helped him. He's quite normal now (same age as my PANDAS dd). No IVIG/no long term abs. I don't think he was as severe as my dd is, but he definitely had PANDAS. He probably didn't have as many untreated strep infections as my dd did either.

 

My dd still has her tonsils. I wish I knew what to do! NOBODY has even suggested it to us (but we are not in the East with the PANDAS docs).

***************************

EAmom, We are in California (Southern) I know Dr's that WILL do T/A I can provide names if you are close to Los Angeles.

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