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Dr. L says to "expect" a flair following surgery. It is causing major inflammation, and a flair is to be expected. Still weird to me, though, why they would suggest it just for pandas, if inflammation alone is enough to still give pandas flairs....if that makes any sense?

 

Tmom-

 

Both of my girls have had a T&A.

 

My older daughter had her surgery for sleep apnea. She had strep throat in 1st grade (2 years before pandas hit our family). After the strep, her tonsils were enlarged and she was gasping for air while sleeping. She had her surgery, and her doctor said her tonsils literally fell apart they were so infected. Recovery and the next two years were uneventful.

 

Her sister contracted pandas due to strep 2 yrs later. Upon my research, and the advice of our two neurologists and ENT we opted for T&A. Prior to her surgery, she was recovered from her first pandas episode. Her tonsils were unremarkable on exam, but on removal the doctor commented that they were large, pitted and infected. Unfortunately, even though she did antibiotics daily for 10 days prior, and after, she had a second pandas episode within a week of surgery. (due to the surgery- in my mind).

 

So, my thoughts on tonsils:

 

I am glad both girls have had the procedure, it is behind us, and I don't have to think about it. But, after having an episode caused by T&A (and hearing this from other parents) I would not, personally advise a T&A unless you have one of two situations: 1. chronic pandas issues, 2. chronic strep. In other words- if it ain't broke, don't fix it. T&A has not stopped my kids from having strep (although only once, and twice since T&A), and it has not stopped them from having pandas episodes. However, we do not have chronic strep, and we are able to get to remission in between pandas exacerbations (although our baseline has slipped a little).

 

Also- Dr Murphy has a recent paper indicating something about a high percentage of kids with pandas already have had T&A, and she doesn't necessarily suggest it. So I would look at that paper (in more detail than I did).

 

If I had a kid with pandas that wouldn't go into remission, or with chronic strep- I would strongly push for T&A. There is some medical evidence that it does reduce the number of strep infections in a child- so of course, that is a major plus for pandas kids. There also is one case study in print about a case of pandas that went into remission due to T&A.

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momcap...did your son have repeated strep, or were tonsils taken solely for pans?

 

My DS8 is making AMAZING progress right now (OCD and germaphobia almost gone, verbal tics completely gone, able to attend school, etc). He started supplements for lyme at the beginning of July, then he had a tonsillectomy August 4th, and then switched to different and higher dose antibiotics for lyme the next week. So who knows which is what. I don't care. I'm just so excited to see him returning to health! He had a bad reaction to the anesthetic - ripped out his I.V. and was thrashing around inconsolable for an hour. I was really worried that it had triggered a bad exacerbation, but after the anesthetic wore off he settled and he did not have a PANDAS episode.

 

We added Bactrim to his lyme treatment last week, targeting bartonella. He got really agitated and aggressive, had stinging sensations, and his feet hurt so badly he couldn't walk. So we have to back off for now, and go more slowly. His major issues right now are bartonella and constant exposure to strep (DS6 is a carrier). It feels like 2 steps forward, 1 step backwards, but the tonsillectomy seemed like 20 steps forward. I think it has the potential in SOME cases to make a huge difference. We felt it was worth the risk in our case because DS was doing so badly - not attending school, debilitating germaphobia, verbal tics, mood disorder, etc. We were willing to try anything.

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I noticed that most of the patients who got better were also on psychotropic medications after too.

This is also where he states that pandas is a genetic predisposition to reacting to exposure, viruses, etc.....again, this makes me wonder how T&A helps...especially in a pitand case.

Still considering it, however. Of my 4 kids, all have or had tics. The older 2 had Tonsillectomy and T&A. Both had transient tics at some point AFTER the surgeries, but aren't on my radar right now. My younger two....pandas dd had adenoids out 2 years ago, her sister, all intact, and is ticcing now, and ocd'ing....Maybe just snip them both together. wonder if you can get a 2-for-1 deal on that ;)

 

 

Here's the second part to the article,

 

He lists cases that he has been involved with.

 

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

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I don't think there is such a thing as a cure for PANDAS. I don't think tonsillectomy, IVIG, antibiotics, steroids, PEX or supplements can cure PANDAS. Each of these is a tool that can relieve symptoms and put a child into remission - if used appropriately.

 

My son had over 3 years of PANDAS relief following his tonsillectomy. At the time we did not know about PANDAS and did not know he was harboring bacteria in his tonsils because he LIVED on antibiotics and the antibiotics kept it at bay but did not remove the bacteria completely. Every time he dropped down to prophylactic antibiotics he became symptomatic with PANDAS symptoms (never a sore throat; never a positive throat swab), with each exacerbation worse than the last - until we finally stopped antiobiotics all together to try to sort out what was happening. At that point, his tonsils turned completely white and we knew the bacteria had been lurking in the crypts of his tonsils for a very long time. After tonsillectomy he came off ritalin, came off antibiotics, and slowly regained health over the next 3 years - until he developed a sinus cyst that sent him into another exacerbation.

 

I do NOT think everyone with PANDAS / PITAND should have their tonsils removed, but I do think everyone with PANDAS/PITAND should have a thorough ENT appointment that includes evaluation of the tonsils. I also think that kids should have very strong antibiotics for a period of time before tonsillectomy (and some docs also do IV antibiotics during tonsillectomy) to prevent an exacerbation due to bacteria or other antigen exposure.

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I don't think there is such a thing as a cure for PANDAS. I don't think tonsillectomy, IVIG, antibiotics, steroids, PEX or supplements can cure PANDAS. Each of these is a tool that can relieve symptoms and put a child into remission - if used appropriately.

 

My son had over 3 years of PANDAS relief following his tonsillectomy. At the time we did not know about PANDAS and did not know he was harboring bacteria in his tonsils because he LIVED on antibiotics and the antibiotics kept it at bay but did not remove the bacteria completely. Every time he dropped down to prophylactic antibiotics he became symptomatic with PANDAS symptoms (never a sore throat; never a positive throat swab), with each exacerbation worse than the last - until we finally stopped antiobiotics all together to try to sort out what was happening. At that point, his tonsils turned completely white and we knew the bacteria had been lurking in the crypts of his tonsils for a very long time. After tonsillectomy he came off ritalin, came off antibiotics, and slowly regained health over the next 3 years - until he developed a sinus cyst that sent him into another exacerbation.

 

I do NOT think everyone with PANDAS / PITAND should have their tonsils removed, but I do think everyone with PANDAS/PITAND should have a thorough ENT appointment that includes evaluation of the tonsils. I also think that kids should have very strong antibiotics for a period of time before tonsillectomy (and some docs also do IV antibiotics during tonsillectomy) to prevent an exacerbation due to bacteria or other antigen exposure.

 

 

*like!*

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We had no flair post surgery. We never took psych meds.

 

Dr. L says to "expect" a flair following surgery. It is causing major inflammation, and a flair is to be expected. Still weird to me, though, why they would suggest it just for pandas, if inflammation alone is enough to still give pandas flairs....if that makes any sense?

 

 

 

I noticed that most of the patients who got better were also on psychotropic medications after too.

Edited by Vickie
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Dr. L says to "expect" a flair following surgery. It is causing major inflammation, and a flair is to be expected. Still weird to me, though, why they would suggest it just for pandas, if inflammation alone is enough to still give pandas flairs....if that makes any sense?

 

My PANDAS daughter didn't have a flair of symptoms after her T&A. I think Dr. L is letting you know the risks, but that doesn't mean ALL kids have flairs.

 

I noticed that most of the patients who got better were also on psychotropic medications after too.

This is also where he states that pandas is a genetic predisposition to reacting to exposure, viruses, etc.....again, this makes me wonder how T&A helps...especially in a pitand case.

Still considering it, however. Of my 4 kids, all have or had tics. The older 2 had Tonsillectomy and T&A. Both had transient tics at some point AFTER the surgeries, but aren't on my radar right now. My younger two....pandas dd had adenoids out 2 years ago, her sister, all intact, and is ticcing now, and ocd'ing....Maybe just snip them both together. wonder if you can get a 2-for-1 deal on that ;)

 

I could be completely wrong, but it is my understanding that tonsils can harbor more than just strep. My non-PANDAS daughter's tonsils cultured positive for haemophilus influenzae. I think there can be latent viruses in the tonsils too...but not much is really known about it.

 

I recall an article (or was it an abstract) that discussed viruses using bacteria as hosts, and that a lot of times it's really just the environment (what types of bacteria, viruses, fungus...you know biofilms) around that contribute to someone getting sick or not...a perfect storm. Anyone else remember that or have a link?

 

Someone had suggested (I can't for the life of me remember who? perhaps it was Swedo in one of her speeches or interviews...? Anyone know?) that perhaps a previous virus, combined with strep a few months later...could be that perfect storm for genetically susceptible kids.

 

When I explained to our ENT how my dd's symptoms got worse even though she didn't test positive on the rapids and culture, he said that those tests are only looking for group A strep. I took that to mean that he believes other types of strep can cause PANDAS symptoms too. Although, he did admit to not knowing a lot about PANDAS.

Edited by Kayanne
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NO change in symptoms with Tonsilectomy.

Just lots of pain and I can not say dont do it because I guess if I didnt do it then I would always wonder would it help.

It did not help us at all.

She still has high strep titers but we are treating Lyme now and feel once the Lyme is treated so will the Strep become normal.

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My daughter has had PANDAS since January 2006. Also chronic MycoP, that we just found in January 2010. We had a T&A in January of this year. It took about 2 months of worsening symptoms, but we are currently symptom free (maybe one or two OCD things present- but not 20 or 30 like before). She also had PANDAS induced anorexia, which is now normalized. She has crossed the puberty threshold (she is 12) and hoping that is going to help her maintain. She also has not been on any psych medications since December of last year - they ALL made her worse.

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I mentioned earlier that my son was neurotypical before the T and A, and had autism and PANDAS afterward. We aren't sure if it was something related to "bacteria being released" when the tonsils were removed, or the anesthesia. I learn towards both, and think the autism issues were related to the anesthesia, and the PANDAS to the tonsils.

 

I have talked to many physicians since the surgery, and read a TON, and my suggestion is to ask the anesthesiologist for "balanced anesthesia" (his term) but basically, no nitrous oxide. It depletes the glutathione and stops up the detoxification process, which we think made the problem 100 times worse.

 

I would suggest having your child at their healthiest before surgery, with lots and lots of probiotics and a good, clean diet.

 

Just my $.02.

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I have talked to many physicians since the surgery, and read a TON, and my suggestion is to ask the anesthesiologist for "balanced anesthesia" (his term) but basically, no nitrous oxide. It depletes the glutathione and stops up the detoxification process, which we think made the problem 100 times worse.

 

 

I wonder it that's why my kids exacerbate with dental work. The dentist uses nitrous oxide. Interesting that it's linked to glutathione. I have some reading to do!

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My oldest son had T&A after 4 recurrent strep infections in short period of time. ENT started him on high dose Augmentin prior to surgery and he stayed on it for several weeks after. He hasn't had strep since, although he still may react a little when one of the other kids are sick. He remains on low dose antibiotics. Over all he is doing well. Straight A student, still has some residual issues with eating a variety of foods. The T&A was key for him. It turned everything around. The antibiotics were key also I think.....

 

Dedee

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