Hopeny Posted February 8, 2013 Report Share Posted February 8, 2013 I had non PANDAS DD3 at ENT today and I disucssed PANDAS with him (BTW a WONDERFUL ENT if anyone in Westchester, NY area needs one) , out of curiosity I asked if he had heard of it and he told me he has done 20-25 T&A's specifically for it, and all but a few were completely effective in erradicating PANDAS thus far. He said Strep can live in other places in some cases but less likely. So it got me thinking, is this something that would be a good idea? DD9 PANDAS Lyme is doing ok but on abx/supps - would be it be a good preventative measure to do T&A? Link to comment Share on other sites More sharing options...
philamom Posted February 8, 2013 Report Share Posted February 8, 2013 Looking forward to the responses, as I recently met a local ENT that would be willing to do this for dd(11). He is very familar with PANDAS/Lyme. Link to comment Share on other sites More sharing options...
beeskneesmommy Posted February 8, 2013 Report Share Posted February 8, 2013 If your kiddo has recurring tonsilitis or Strep throat, absolutely, yes! make sure that a specialist is following the situation and get a sterilizing run of abx prior to the surgery. reg. prophylaxis is not enough. I know, from learning the hard way. Link to comment Share on other sites More sharing options...
Hayley Posted February 8, 2013 Report Share Posted February 8, 2013 Good friends of ours just did a T&A several weeks ago on their DS7 with PANDAS and saw a MAJOR improvement pretty quickly. Certainly not 100% (they actually did IVIG this week to get him the rest of the way there), but signficant gains. No strep showed up in the tonsils, but lots of other infection. Their son did not have a history of tonsillitis or other indications that would have suggested the T&A prior to the procedure. The ENT they used said that he has had a number of kids referred to him for T&A based on PANDAS and in every case, when he takes them out and cultures them, they are a mess! That said, my DD had her's out several years ago, long before tha dramatic change in behavior we recognized as PANDAS, so obviously the T&A is not a cure all for everyone. If my DD did still have them, though, I'd be inclined to take them out now. Link to comment Share on other sites More sharing options...
sf_mom Posted February 8, 2013 Report Share Posted February 8, 2013 We had kissing tonsils in two children... At some point a couple years ago, someone convinced me tonsil/adenoid were a valuable filter for infection and that the infection could be residing in almost any organ in the body. Since we were dealing with Lyme et al, it is common for these infections (not specifically strep) to be in the appendix, spleen, kidneys, bladder, sinuses, gallbladder, etc. In my mind and since we knew we were dealing with chronic infection our strategy was to deal with those infections first and if recovery stalled then maybe we would reconsider pulling tonsils. Thankfully, it doesn't appear we will need to remove tonsils as they are no longer kissing and both kids are making strides towards full recovery. Neither boys have ongoing issues with strep and titers have almost normalized for our entire family. DH's anti-DNase-B is still slightly elevated but trending in the right direction in the low 400s when he was 980 at one time. DH's ASO was also elevated/positive but is now sub negative. I think it is a very personal choice and I was not always convinced we were making the right choice. It was very difficult to stay committed to not pulling them when they were still kissing and we had symptoms. Each time the topic has come up the forum, I had doubts about our choice. I do believe pulling tonsils can bring relief (we've all read positive stories) and if that gets a child to the next phase of recovery, I am all for it!!!!! I also reserve the right to change my mind on this topic but for now 'not pulling tonsils'. Link to comment Share on other sites More sharing options...
ThinkGutBacteria Posted February 8, 2013 Report Share Posted February 8, 2013 We saw a big improvement too. Not a cure, sadly but we haven't slid back to baseline since either. Link to comment Share on other sites More sharing options...
Dedee Posted February 8, 2013 Report Share Posted February 8, 2013 It was the best thing we ever did for our oldest son. He is strictly a PANDAS kid. He reacted to strep and did not have the myco that my other two have. We had him on high dose Augmentin before surgery and for several weeks after surgery. It made a huge difference for him. Dedee Link to comment Share on other sites More sharing options...
JPdad Posted February 8, 2013 Report Share Posted February 8, 2013 (edited) We are 10 days post T&A for our son today. He wasn't in a flare before the T&A and has remained baseline after it thus far. We did 10 days of abx pre and post surgery with IV abx during. Although the ENT doc didn't think his tonsils were that large upon initial examination, he discovered they were deeply pitted and had white spots on them once he did the surgery. We chose to go the T&A route because after the initial episode which was triggered by strep, he had a bunch of flares caused by ear infections (practically one a month for a year). We are hopeful that the prevention of ear infections plus proph. abx will keep him symptom free for long stretches, but I don't think there is any evidence that it is a 100% cure all. Edited February 8, 2013 by JPdad Link to comment Share on other sites More sharing options...
philamom Posted February 8, 2013 Report Share Posted February 8, 2013 (edited) Could you guys please mention the age of the child when it was done. I'm wondering if there is an age when it's no longer recommended. Edited February 8, 2013 by philamom Link to comment Share on other sites More sharing options...
ptcgirl Posted February 9, 2013 Report Share Posted February 9, 2013 My DD is 13 now. At 9 yrs old she had a T and A removal. It was amazing. She was 100% for nine glorious months. Then she got Lyme and some coinfections. Everything came back. It was awful. It was worth having it done. I would do it again but it doesn't mean it would be forever. Just my two cents. Link to comment Share on other sites More sharing options...
Hopeny Posted February 9, 2013 Author Report Share Posted February 9, 2013 Thanks everyone. I don't recall that DD ever had strep before everything went downhill last year. Then she had what doctor called "a dramatic presentation of strep" which he said was not even necessary to culture. She said her throat didn't hurt at all. I was a strep carrier when I was young, I was + on almost every strep culture I have taken. My ASO and D-Nase are normal. Given my history, I am wondering if perhaps the stuff is hiding behind her tonsils. Her ASO has not budged in 12 months, despite tons of abx, its mildly elevated (200 with normal range capping out at 150). I'm curious to see where it is now after months of Rifampin. I am going to take her to ENT for a consult and bring her in when sick to check her adenoids. Then go from there. I will definitely insist on IV abx during and after, along with culture, if we go through with it. DD also has mild asthma, so I supposed that might help that too. Link to comment Share on other sites More sharing options...
sosudden Posted February 10, 2013 Report Share Posted February 10, 2013 Very important part of dd healing! She was 9 almost 10. Link to comment Share on other sites More sharing options...
reactive Posted February 11, 2013 Report Share Posted February 11, 2013 I'm late on this one...but I have strong opinions on tonsils. Mainly because I wish I had mine out as a kid. I am now 45 and am living with the aftereffects of NOT having them out...including an autoimmune reactive arthritis I developed in my midtwenties and now a chronic crytpic tonsillitis that comes and goes. One ENT said to take them out even at my age, and another said I was too old and too much of a risk. My advice, if anyone is EVER in the fence about getting them out...just do it now. The older you are, the harder it is... Link to comment Share on other sites More sharing options...
reactive Posted February 11, 2013 Report Share Posted February 11, 2013 I'm late on this one...but I have strong opinions on tonsils. Mainly because I wish I had mine out as a kid. I am now 45 and am living with the aftereffects of NOT having them out...including an autoimmune reactive arthritis I developed in my midtwenties and now a chronic crytpic tonsillitis that comes and goes. One ENT said to take them out even at my age, and another said I was too old and too much of a risk. My advice, if anyone is EVER in the fence about getting them out...just do it now. The older you are, the harder it is... Link to comment Share on other sites More sharing options...
reactive Posted February 11, 2013 Report Share Posted February 11, 2013 sorry i keep double posting Link to comment Share on other sites More sharing options...
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