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T&A removal


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Hi all,

 

I haven't been on the boards in quite a while. But I seem to remember reading that some families experienced success with doing the T&A removal for several months and then at about the 9 month mark (some? all?) symptoms returned. Reading that then was enough to scare me off. However in thinking about it, I'd love to hear the updates at this point. Is anyone regretful that your child had the surgery? Or have the benefits outweighed the procedure? Were the rturn of the symptoms mild or did they come back in full force and remain?

 

I have a 6yo PANDAS/Lyme DD and a 5 yo strep carrier that we cannot eradicate. The ped and I discussed remvoing the PANDAS tonsils but also are starting to strongly consider removing the strep carrier's tonsils. I had my tonsils removed several years ago. DH still has his but hasn't ever seemed to trigger DD.

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Hi all,

 

I haven't been on the boards in quite a while. But I seem to remember reading that some families experienced success with doing the T&A removal for several months and then at about the 9 month mark (some? all?) symptoms returned. Reading that then was enough to scare me off. However in thinking about it, I'd love to hear the updates at this point. Is anyone regretful that your child had the surgery? Or have the benefits outweighed the procedure? Were the rturn of the symptoms mild or did they come back in full force and remain?

 

I have a 6yo PANDAS/Lyme DD and a 5 yo strep carrier that we cannot eradicate. The ped and I discussed remvoing the PANDAS tonsils but also are starting to strongly consider removing the strep carrier's tonsils. I had my tonsils removed several years ago. DH still has his but hasn't ever seemed to trigger DD.

 

I'm also interested in hearing some feedback on this. My DS, 5, has had a bunch of issues with recurrent ear infections and he is scheduled for the T&A removal pretty soon. Each ear infection was atypical presentation with no symptoms except for the Pandas movements that he exhibits. A few days on ABX and he is back to 100%, but then a few weeks later he'd get another infection.

 

I haven't heard anything negative about the T&A removal, except that you still may need proph. ABX afterwards.

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Our son had an extreme and along lasting acute episode d/t T&A while Strep infected. That being said, he did not have a sterilizing run of abx prior to and during the surgery. Dr. T recommends a strong run like Clindomycin or Rifampin to kill off or suppress lurking Strep in the tonsils. Would I do it again? You bet! It was ######, but that was in part because it was not done correctly. I belive that my son would have gotten worse and worse with those icky tonsils in him, and there would be little chance of recovery because the Strep was hiding in there. In addition having a carrier in the family will decrease chances of recovery. If you can get them both taken care of, it may be a good thing...

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Bees knees mommy

I am really interested In the t&a for ds who is ten. I had many sore throats as a child and strep and was going to get tonsils taken out until my mom panicked and cancelled the surgery!! DH also has strep on his side with his mom who almost died with rheumatic fever. He also mentions of sour throats that he just never was put on Antibitics at 16. Anyway I think there is a lot of strep on both sides. I am considering this greatly but what is keeping me to presenting this to doctor is the I fear that I need to do the antibiotics before and after and they will think I am crazy. Ds is doing well and I don't want to mess him up!!!! So If I get doctors to do this without antibiotics I am scarred!!! I guess I should say he is doing well but manageable. I still see OCD and fears and what not but is not life threatening and making his life miserable like I have seen in the past. if you can pm me about your experience that wound be great!! I have this weird feeling in me that I need to take it all out maybe bc my mom didn't and I still had strep to a point.

 

Mar

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We had our son's done last year, after 22 strep infections in just under 2 years. We did a course of abx pre-op (cefdinir - which was beginning to fail for him but we all agreed not to change up prior to surgery - that way if he did have a flare, we would have augmentin to turn to - which he hadn't been on yet) He did IV abx during surgery, and then augmentin for 6 weeks post op. Our ENT - who was familiar with PANDAS, said that IV abx during surgery used to be standard protocol for all T&A - but fell out of favor in recent years. However, it is his standard procedure for PANDAS kids - or kids with other immune issues. In addition - we also sanitized the entire house (not kidding), and the whole family was put on 30 days of abx, started one week pre-op - including the dogs!

 

Immediately after surgery my son was 100%. For the first time in almost 2 years - he was 100%. In fact, he gained 10 pounds in 6 weeks because for the time he was eating normally (lots of food triggered OCD).

 

It was such a sucess, that my mild PANDAS daughter went in 3 weeks later to have hers removed.

 

Unfortunately, our success was shortlived. Within 5 days of ending the 6 week course of post-op abx just after the new year, my son tested + for strep. My daughter followed a month later. By June - he had 4 positive strep tests and a bout of mycoplasma. My daughter has had 5 positive strep tests since January.

 

We have now found other key pieces to our puzzle (son + for lyme, dad's strep titres high (probably why we did good when dad was on abx too), mold in the house...).

His flares post-op have been more manageable - they're no picnic, but they have gone down a notch or two on the severity scale, so that helps. Still haven't been able to get him off abx long term - so in that sense, I guess it was a failure, but even though we didn't solve our chronic strep problem - it did give us our son back for 6 glorious weeks. We'd forogtten what "normal" was like for him - and that was as valuable as anything. To realize that he could get better, and it was worth fighting - we weren't dealing with PANDAS - and a hyper/finicky, etc... kid. It was ALL PANDAS.

 

If I had to do it over again - I would in a heartbeat!

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Our son had an extreme and along lasting acute episode d/t T&A while Strep infected. That being said, he did not have a sterilizing run of abx prior to and during the surgery. Dr. T recommends a strong run like Clindomycin or Rifampin to kill off or suppress lurking Strep in the tonsils. Would I do it again? You bet! It was ######, but that was in part because it was not done correctly. I belive that my son would have gotten worse and worse with those icky tonsils in him, and there would be little chance of recovery because the Strep was hiding in there. In addition having a carrier in the family will decrease chances of recovery. If you can get them both taken care of, it may be a good thing...

 

 

It's 10 days of Clinda with the LAST 4 days you add rifampin, he says this clearly in his radio interview he recently did w/ Marcel.

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Both of my daughters have had T&A and PEX, and I would do both, or recommend both.

 

For us PEX was a fast-acting miracle. It got rid of ALL of their ocd from their major exacerbation. It was not a cure, but brought them (quickly) to baseline- which I think is really important for long term health.

 

One had a T&A prior to pandas- so clearly it is not a "cure". She was having sleep apnea due to swollen tonsils after a strep infection, this was two years prior to pandas hitting- she had NO pandas symptoms in retrospect.

 

The other daughter had T&A because of pandas. The ENT was happy to do the surgery because our neuro referred us, and there is a published case study where a T&A did stop pandas symptoms which he was aware of. That daughter had strep 3x in the 2 years previous. He stated her tonsils were "unremarkable" on examination, but when removed he said they were clearly infected (no labs done). She did have an exacerbation due to the T&A- but was only on zithromax prior and post- I think that clinda and rifampin would have helped.

 

Both have had strep since the surgeries, once or twice.

 

I do not know the impact of the T&A. I do know that the debate/ concern over whether to have this surgery would probably have never ended- so I am glad we did it, and did it when they were young. The recoveries were relatively easy. I also know that they do not seem to have "chronic" illness, or "chronic" pandas- they respond well to treatment. Who knows?

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Thanks for the replys! Yes from what I read it won't stop strep but my concern is it will help him in any way. I just have this weird feeling that his anoids are messed up. Yes he has allergies but from a child he always is congested and recently gets a cold or whatever it was he is like a fountain of mucus!!! Probably allergies and cold combined. I have noticed for a while now like ten years that when things hit him he can bearly breath. His tonsills aren't huge like mine where when I was his age but who knows from what I have read. it seems that you guys don't regret it. My son is also at the point where he is not suffering full blown pandas but has other symptoms that make me wonder. He has occasional tics, OCD, sensitivities but is manageable at the time. This is why I feel I need to do the T&A. He will panick and freak when he finds out!!! If will not be easy with him and that is why I want to be sure I can provide him with antibiotics and all so no other symptoms arise. I feel that I should do this during summer break when he will be 11. Is this too late!! I just don't know if it's good to do it through the school year when he is prone to catch strep or what not.will I be waiting too long ? Did your kids have axiety prior bc i know ds will flip!!!

 

Mar

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My oldest son seems to react only to strep. Several years ago when we could not keep him clear we did T&A while on high dose Augmentin. Best thing we ever did. I think the key is to do high dose antibiotics before and after the surgery. This was the only thing that started to bring his titers down and give relief of symptoms. He has remained on antibiotics but at a low dose since that time.

 

Dedee

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