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DD had a nasty sinus infection back in early 2011 (in hindsight probably strep) and saw ENT. Had Ct Scan and sinus persisted even after abx. He suggested tonsillectomy, but we waited. This was before we knew she had PANDAS. Once strep throat was detected a few month later, we've been in a constant battle. Now I'm wondering if some of her residual symptoms would be eliminated by a tonsillectomy? I guess there's really no way of knowing without doing it, but I guess I wanted to poll here to see who it helped and who it didn't.

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DS 11 Pandas had a tonsilectomy and adenoidectomy last year with resolution of pandas sx.(primarily tics). I am so happy we went through with it. In my opinion I would make sure they also remove adenoids as ENT that did the surgery believes strep was hiding there. Also antibiotics before during and after surgery.

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First, a curiosity of mine. I hear about sinus problems on this board but in the back of my mind I wonder how many of them are actually migraines. "It's not uncommon for a migraine to be associated with a stuffed nose or a runny nose. A migraine headache has a discharge from the nose that is clear and it isn't accompanied by a fever. " -Dr. Larry Newman, Director of The Headache Institute at St. Luke's Roosevelt Hospital in New York City

 

As for your question, we had T&A (as they're known) for our dd who was 6 at the time and before we were PANDAS-aware. We marveled at how it seemed to have solved all of the many disparate issues we were having with her. She started her vocal tic again a few months ago after a respiratory illness (w/chest cough) and some of the anxiety but since the T&A, we have't had any of the screaming tantrums, oppositional behaviors, and things like that.

 

I had to talk myself in to the operation because I use to whorl in the pharmaceutical industry and I saw first-hand how biased a lot of medical information can be. The T&A benefits are real, though, owing to the removal of major reservoirs of bacteria (the removed tissues) but also the greatly improved deep sleep, which is SUCH a potent healer.

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Some folks have reported a worsening of symptoms post T&A - that was not the case for us. When we did T&A in November of 2011, it was the first time in close to 2 years my son was 100% symptom free. No tics, no OCD, nothing. He even gained 7 lbs in 6 weeks because he was eating regularly for the first time in years. It was wonderful. Unfortunately - 6 weeks or so post op he tested + for strep again, and we started over. His flares have not been as difficult since the T&A, and his recurrance of strep has decreased (but it's still more often than rest of the world!)

 

Some suggestions - INSIST on pre and post op abx, as well as IV abx during the surgery. Many folks who reported issues post op did not have all of these precautions. INSIST on having the tonsils cultured - it may help give you a clue as to what is going on. Don't be in a rush to quit post-op abx if things are going well. That was our mistake. He was 100% so we all thought we could maybe take him off the abx - he got strep within days!

 

We had such success with it for our sever PANDAS son - that 3 weeks later we had our mild PANDAS daughter's removed. She too has gotten strep again since (only 2x, compared to 5 the previous year!) but her symptoms have always been a walk in the park compared to my sons.

 

Eventhough it didn't solve all of our issues - I would absolutely do it again in a heart beat.

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We had a T&A done last summer upon Dr Latimer's recommendation. We cannot tell that it helped, but are glad we did it before DS14 got older. It is done now and we don't have to worry about what might be hiding in the tonsils and adnoids. The tissue was cultured, no strep found (we were hoping it would be), but Haemophilus Influenzae was found. The ENT did not think that to be too unusual. There is no way to really culture this tissue, exept to take it out, as far as I know...so we are glad we did it.

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I have mentioned this before, but I firmly believe in T&A in most cases. Probably would have saved me the reactive arthritis I came down with at age 22. And I now have chronic cryptic tonsillitis. I really sucks. And the older you are, the harder it is. I really wish mine had been taken out as a child; I am now 45 and the risk is greater. Anyone questioning T&A needs to read the blog "tonsillitis understood" by a wonderful retired doctor named Itzhak Brook. He is awesome. It explains why strep can be recurrent...the tonsillar crypts and what not, and the other bugs that can live in those crypts that can render the antibiotics ineffective in killing the strep in the tonsils. And all this is regardless of PANDAS, although my son is PANDAS. Both my boys have had T&A. IMHO if you have PANDAS and strep, they better be taken out. Why take antibiotics everyday with those things still in there !!

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Also, BTW MMC- our PANDAS son was sick and having a PANDAS flare...thought for sure he had strep- rapid negative but 2 days later culture + for H flu as you mentioned...not sure but may have caused the flare? This was a few years ago. H flu is common in the tonsils but in this case caused a tonsillitis in our PANDAS son and his fever abated once on antibiotics.

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My 10 yo dd had her tonsils out last year and had a horrible time after....incredible separation anxiety, anger and frustration with teachers at school, rages at home. HOWEVER, we did not to abx.before, after or during. I think that would have seriously helped. Even if it wouldn't have helped, I still would have done it. Because that reservoir for all kinds of things is eliminated. We plan to take my 3 y o's out ASAP.

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DS7 had a t&a in June due to enlarged adenoids causing sleep apnea. I had no idea he had pandas at the time. The first week after the t&a was AWFUL. Apparently taking out the tonsils realeases a LOT of strep into the body. It was the worst tantrums I had ever seen, but within a week he wonderful! He was sleeping though the night. He was happy! He was CALM! I thought it was because he was finally sleeping! Well the symptoms came back about a month later. But never got as bad. And that was before I knew about PANDAS. I would do it again in a heartbeat. I would just prepare myself for that first week. Woooh! It's a doozy...

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In 1922, Dr. Cotton said:

 

‘That the children of the present generation are having

their infected tonsils enucleated, will, we believe have a

definite influence on the elimination of systemic and

mental disorders later in life.’

H A Cotton, 1922

 

Dr. Cotton also said:

 

The so called functional psychoses we believe today to be due to a combination of many factors, but the most constant one is the intra-cerebral, bio-chemical cellular disturbance arising from circulating toxins originating in chronic foci of infection, situated anywhere in the body, associated probably with secondary disturbance of the endocrine system. Instead of considering the psychosis as a disease entity, it should be considered as a symptom, and often a terminal symptom of a long continued masked infection, the toxaemia of which acts directly on the brain.

 

A summarization of his research:

 

Dr Cotton identified infection of the teeth and tonsils as the most important foci

to be considered, but the stomach and, in female patients, the cervix could also be

sources of infection responsible, according to Dr Cotton’s theory, for the mental

condition of the patient. The logical treatment for the mentally ill resulting from

Dr Cotton’s theory was surgical elimination of the chronically infected tissue, all

infected teeth and tonsils certainly and, for many patients, colectomies. Additionally

female patients might require enucleation of the cervix, or in some cases complete

removal of fallopian tubes and ovaries. Such treatment was, according to Dr Cotton,

enormously successful; out of 1400 patients treated, only 42 needing to remain in

hospital.

 

http://www.drugs.am/upload/Clinical%20trials%20in%20psychiatry%20Brian%20S.%20Everitt%3B%20Simon%20Wessely%202008_1243920601843.pdf Search for ‘tonsils’.

 

 

More recently, Dr. Klinghardt has said:

 

If the patient is 22 years old or younger, miracles occur from having the tonsils removed.

Strep is often living in the tonsils. It may lead to attacks against the joints and myelin even if the tonsils do not have pus. (changed, editor didn't like the real word)

Cryotherapy in Germany may be useful.

When kids have the dance of St Vitus, think tonsils.

Compulsive behavior can be related to tonsils.

 

http://www.klinghardtacademy.com/images/stories/Lyme_Disease/beyond_lyme_notes.pdf

 

 

He also says:

 

The tonsils are the beginning of the GALT (Gut-associated lymphoid tissue) which is 80% of the immune system. The tonsils program the entire system. Some may have had their tonsils removed but can still have problems. Microbes live in the tonsils and tell the lymph that the bugs are not a threat. You then end up with cross-reactions like PANDAS (now PANS) or in adults joint and cardiac Lyme. The immune reactions go away when you deal with the tonsil issue. Sinus, nose, tonsils are all the same tissue and must all be considered.

 

http://www.betterhealthguy.com/joomla/blog/264-physicians-round-table-2012

 

 

Dr. Klinghardt says this on page 46 of his 2010 Treating Lyme PDF:

 

Chronically infected tonsils are often a major contributing problem in brain inflammation/autism/ autoimmunity

 

The anatomic position of the adenoids and tonsils (directly in the

 

Lymph waterways leading out of the brain) gives them a powerful

 

role. They often are infected or scarred up and create a bottleneck with back-up into the brain

 

Degenerated tonsils often house multiple bacterial and viral colonies and produce potent brain neurotoxins: use Quintessense (BioPure) and neuraltherapy (procaine injection)

 

PANDAS: Strep related brain autoimmunity symptoms in autism:

verbal stims, repetitive, ritualistic, obsessive- compulsive

 

Be prepared that currently ENT doctors often do not believe that tonsil infections are problematic – and resist performing a tonsillectomy

 

http://www.klinghardtacademy.com/images/stories/powerpoints/treatinglyme%202010.pdf

 

 

More Klinghardt and tonsils:

 

http://www.klinghardtacademy.com/Articles/The-Tonsils-and-Their-Role-in-Health-and-Chronic-Illness.html

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DD had a nasty sinus infection back in early 2011 (in hindsight probably strep) and saw ENT. Had Ct Scan and sinus persisted even after abx. He suggested tonsillectomy, but we waited. This was before we knew she had PANDAS. Once strep throat was detected a few month later, we've been in a constant battle. Now I'm wondering if some of her residual symptoms would be eliminated by a tonsillectomy? I guess there's really no way of knowing without doing it, but I guess I wanted to poll here to see who it helped and who it didn't.

 

My son has a long history of chronic sinusitis - no strep throat on culture. At age 7 we stopped all antibiotics as nothing seemed to help and we were just trying to figure out what to do. When we stopped them his tonsils turned completely white. ENT said "bingo" he must have been harboring bacteria in his yucky, large, cryptic tonsils all these years and whenever he went off antibiotics the bacteria went up to his sinuses and made us think it was another sinus infection. We had them removed and it was the best decision for him. He had 5 years of minimal pandas symptoms, decent health and "typical" development - until he was hit with some major infections at age 12. In hindsight, he also had common variable immune deficiency, but we did not know to keep an eye out for that.

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