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Tonsils - to pull or not to pull


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Just read this article on PANDAS that states tonsillectomy is almost a standard of care for PANDAS in Europe :

 

http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain

 

1) Of the parents that chose this route on the board - what has the outcome been? Have exacerbations reduced?

 

2) What do the expert PANDAS Drs say about doing tonsillectomy

 

3) If your child is like mine, who reacts to even being around strep and never gets sore throat or typical strep symptoms, would a tonsillectomy do any good in these cases?

 

Thanks for any imput!

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We see Dr. Murphy, and she has told us that having his tonsils removed would not make a significant difference and there is conflict documentation about its effacacy. My son is also very sensitive to exposure.

 

That's just what she told us. I think some other doctors do advocate to remove them - although, it may be on a case by case basis all the way around.

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My dd9 never had typical strep symptoms. Dr L recommended we remove them. Exacerbation after Removal with eventual slow steady improvement. I would definitely do it again. Hope that helps. Feel free to PM if you have any questions.

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This has come up quite a bit recently.

 

Two pandas experts plus and ENT advised us to try the T&A.

 

For us, one daughter had T&A prior to pandas due to sleep apnea (which started after strep throat!) The other had it done because of pandas.

 

The one daughter did have an episode due to T&A.

 

I am happy we had the procedures done, because both girls tonsils were noted to be very infected upon removal (something the ENTs did not see prior- two different ENTs). I am happy they will go forward with no tonsils for me to worry about harboring infection.

 

That being said- I don't think, at this point, it has made a difference in pandas. Both have had strep and pandas episodes since. Neither had many streps prior.

 

I would advise a T&A when the time is right, for most.

 

If things were 90% plus, I don't think I would rock the boat.

 

If you were considering IVIG or PEX, I think I would get it done first.

 

If things seemed somewhat chronic- I again might consider it, due to the possibility of tonsils harboring something.

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Thanks for all the insight! Bill, I can't imagine why they didn't just take the adenoids when they were in there? Ts and As go together like salt and pepper, strawberries and cream......I'm off to the Dr for a throat swab in an hour for my ds, didn't completely get over the last exacerbation back in April and here we go again:( Will continue to ponder the tonsillectomy issue.

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My DS, turning 5 in Sept., had many, many Strep+ tests that coincided with PANDAS flare-ups for a year and a half prior to getting a T & A last Aug., 2010. He was also atypical for Strep symptoms, rather, I would bring him in for a Strep test when the PANDAS symptoms emerged. D/t the medical necessity concerning heart, etc., the ped decided we should remove them. here's where it got tricky. He was Strep+ prior to the T & A and although I asked if we should do some abx to kill off the Strep first, (ped x 2 and ENT x 1) they did not seem concerned. I followed their lead and that was a big mistake! Make sure that your kiddo has a sterilizing round (or 2) of abx before and after the surgery! My son had a hugely acute episode post surgery (it was his first) and it has been a year's journey for recovery. He is getting better in the big pic, but the first few months were really frightening. Overall, I think that the lack of active Strep has been a positive thing, but we could have done this in a much safer way, possibly avoiding the large, crisis oriented symptoms. The PANDAS did not go away after the T & A, rather, the titers stayed extremely elevated for 10 months. I am glad that they are removed because although he is sensitive to Strep around him, he had pockets in his tonsils that were harbouring it. Thus, he really didn't have recurring Strep, but it just plain lived in there, activating toward the end, every 2 weeks. I would not say that the flare-ups have reduced, in fact, they became much more frequent at first. So, I think that in our case, the T & A caused further probs., but likely because it was done while DS was active with Strep. Our PANDAS doc says that there are some kids who do respond better and slowly pull out of PANDAS after T & A (these are kids with straight Strep:PANDAS and with no other diagnosis, like DS). However, she cautions that this is not the case with all kids with PANDAS (wish it were that simple)!! Although it has been 2 steps forward and 1 step back, DS is recovering and getting better with each passing month.

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This has come up quite a bit recently.

 

Two pandas experts plus and ENT advised us to try the T&A.

 

For us, one daughter had T&A prior to pandas due to sleep apnea (which started after strep throat!) The other had it done because of pandas.

 

The one daughter did have an episode due to T&A.

 

I am happy we had the procedures done, because both girls tonsils were noted to be very infected upon removal (something the ENTs did not see prior- two different ENTs). I am happy they will go forward with no tonsils for me to worry about harboring infection.

 

That being said- I don't think, at this point, it has made a difference in pandas. Both have had strep and pandas episodes since. Neither had many streps prior.

 

I would advise a T&A when the time is right, for most.

 

If things were 90% plus, I don't think I would rock the boat.

 

If you were considering IVIG or PEX, I think I would get it done first.

 

If things seemed somewhat chronic- I again might consider it, due to the possibility of tonsils harboring something.

 

Well said Eileen,

 

We are most likely going to have my son's tonsils taken out after two years of fighting PANDAS. I was going to call to make the appointment today but put it off for one more day. My son still has elevated strep titers two years after a case of untreated strep throat started his PANDAS. We realize that it won't necessarily cure him of PANDAS, but if the tonsils do harbor strep that his immune system is fighting but can't clear, then I don't think he is ever going to get over this. Just like if a child has PANDAS and is constantly getting re-exposed to strep from a carrier who is a family member. If strep caused the PANDAS and you can't get away from the strep, it seems pretty likely that that is a bad thing.

 

I was told secondhand that Dr. Cunningham is a supporter of T & A removal for PANDAS. Has anybody on here asked her that question directly?

 

Dr. K doesn't support it, but on one of the several case studies he has on his website, one of the children who responded so well to IVIG had previously had T & A removal. Maybe the IVIG wouldn't have worked so well if they hadn't.

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Just read this article on PANDAS that states tonsillectomy is almost a standard of care for PANDAS in Europe :

 

http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain

 

1) Of the parents that chose this route on the board - what has the outcome been? Have exacerbations reduced?

 

2) What do the expert PANDAS Drs say about doing tonsillectomy

 

3) If your child is like mine, who reacts to even being around strep and never gets sore throat or typical strep symptoms, would a tonsillectomy do any good in these cases?

 

Thanks for any imput!

 

1. DS7 just had his tonsils out on August 4th. I can't say what the outcome is because it's too soon to tell. So far so good.

 

2. Dr. T told us to do it.

 

3. My child is also HIGHLY reactive to just being exposed to strep. Whenever he flares someone swabs positive, but not usually him. He has only had 2 positive throat swabs ever (one just checking out of the blue and was shocked), and was even negative when he broke out in the scarlet fever rash after his 2 brothers had scarlet fever. His ASO runs chronically in the 500s, but we were lucky to get a baseline of 27 during a blood draw years ago before all of this started. I don't know if this tonsillectomy was the right decision, but we have a strep carrier in the house and felt we needed to try everything possible to protect him from strep, especially with ongoing exposure at home. He's also started treatment for lyme after testing positive last month, so we're hoping for some major improvement, whether from the tonsillectomy or lyme treatment we may never know. But I don't care so long as he gets better!

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Dr. K doesn't support it, but on one of the several case studies he has on his website, one of the children who responded so well to IVIG had previously had T & A removal. Maybe the IVIG wouldn't have worked so well if they hadn't.

 

Dr K recommended a T & A for my younger dd. Very similar to what others are reporting; tonsils did not appear problematic upon office exam, but quite indicative of chronic infection upon removal. The ENT removed them solely on Dr. K's recommendation. My older dd's were removed years ago, kissing tonsils that resulted in terrible snoring, questionable apnea.

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Unfortunately, T&A is what set off PANDAS in our son. If we had known, I'd probably have worked with the ENT more closely so that he more carefully removed the tonsils.

 

I wish we wouldn't have done the T&A but I think the problem also had a lot to do with the anesthesia as well. My son had an autism diagnosis for two years after the surgery and then we just had the PANDAS label. He had IVIG four months ago and I call him "in remission."

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