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Removing Tonsils


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My son had high ASO, anti-Dnase, and streptozyme test but came up negative on the typical "throat swab" test for strep and did not have swollen tonsils. He has never had problems with sore throats and, as far as I knew before the tests, had never had strep or strep symptoms. Maybe this is a silly question, but I was wondering if anyone has ever had their child's tonsils removed just to help with the PANDAS symptoms and not because the tonsils were inflamed. The only reason I am asking is because I have read of so many children with PANDAS who improved after removing the tonsils.

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I think everyone has a different opinion and different experience with tonsils. My son was in a chronic state of PANDAS exacerbation until we had his tonsils removed - then we saw slow, steady healing for the next few years. However, he had severe allergies and sinusitis and lots of post nasal drip that caused tonsil irritation and allowed the tonsils to harbor bacteria - so every time he came down from the highest antibiotics he had a PANDAS flare up.

 

That being said - there are folks on here who had tonsils removed and found that it disrupted bacteria (strep?) to the point where their child went into an exacerbation after the tonsillectomy.

 

I don't believe there are any articles showing that tonsillectomy (without tonsil problems) helps to cut down on PANDAS symptoms.

 

so... I am wondering if tonsillectomy would be good for your child or just expose him/her to possible flare up.

 

Also, if your son's ASO and DNASEB are high - do you have any idea where the infection is... or are you hoping / thinking it is in the tonsils and just not showing up on throat swab?

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kimballot -- I have no idea where the infection is. He has no symptoms. And if I took him in today to the doctor, probably his tonsils would look fine. I do have some guess that he may have strep in the sinus area. Again, there are no symptoms, but he usually gets yellow discharge from his nose with a cold (he is perfectly health right now and rarely gets a cold--maybe twice a year). Do you think I should take him to an ear, nose, throat doctor? But since he has no current sinus issues, would they not find anything? The reason I am asking these questions is that we are looking into IVIG or PEX and I want to make sure we have done everything possible to make sure he is free of infection first, hoping this will help with the success of the IVIG or PEX. But maybe I am just being overly cautious. The doctor (Dr. T) has already gotten his ASO down and we just ran blood work to see if his mycoplasma and Dnase numbers have come down (has been on antiobiotics since the end of October--Augmentin XR then Biaxin then Omnicef then Clindamycin and will be switching to Azithromycin on Monday). If ASO, Dnase and mycoplasma are in the normal range, should I assume we are in good shape in terms of infections and therefore feel free to move on to IVIG or PEX? Thank you all for your responses!

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Hi Christianmom!

 

Our PANDAS doc, Dr. Latimer, suggested tonsil removal for both my PANDAS sons. By the time we went to see her, my older son already had them out due to 100% airway obstruction of his left nasal passage (from his adenoid).......we didn't need another reason..but, we were glad because we wanted to do it for PANDAS anyway. Now, 3 years later, we just had our younger sons tonsils removed based solely on PANDAS. (in Nov) We told the ENT about his bad reactions and, although he was not familiar with PANDAS, he was familiar with Sydenham's Chorea. I told him it was like that....that he gets bad OCD and tics. He didn't question me any more and said...."by all means, lets get them out." They looked fine on examination, and, my son only had two documented strep infections. It was great he did it for us. After removal, the perfectly normal looking tonsils ended up to be "very infected." We were floored. My son had no exacerbation from the procedure (some do)...only improvement. We saw Dr. Latimer recently, and she recommended it for him before we went any further with anything.....(IVIG, etc....which, we don't need at the moment.. I pray it stays that way) She said tonsil removal is the thing lots of these kids need. I told her the ENT said they were cryptic with pus...she said good thing we got them removed....she said antibiotics do not reach into those crypts. In no way do I believe this is a cure...but, I do believe it can be very beneficial to many PANDAS kids. Like Latimer said.....your kids (meaning mine) problems are with strep....do whatever you can to eliminate the source of the problem. The ENT said tonsillectomy (we also had adenoids removed in both) can reduce the incidence of strep up to 80%...however, it does not eliminate it...but hey...I'll take 80%!

 

Hope this helps. It is always a hard decision..for us particularly for my younger son because he had added concerns and risks involved with the procedure(non PANDAS related)...it was really hard...but, I had good docs on board and was reassured he would be fine. Plus, lots of prayer. He did great!

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After 2 asymptomatic strep infections and a dx of PANDAS, our ped sent us to an ENT. The ENT wanted tonsils out solely because of PANDAS. My son did have t and a surgery. He was doing well at time of surgery so I cannot say if surgery would have helped symptoms since symptoms were not present at the time. Like PMom, I was told it lowered his chances of strep by 80%. I see it as he can still get strep (and did get a strep a month after surgery) but I will never know how many times having his tonsils removed actually prevented another infection or how many it may prevent in the future. For my son, I do not regret one second having them removed.

 

 

My son had high ASO, anti-Dnase, and streptozyme test but came up negative on the typical "throat swab" test for strep and did not have swollen tonsils. He has never had problems with sore throats and, as far as I knew before the tests, had never had strep or strep symptoms. Maybe this is a silly question, but I was wondering if anyone has ever had their child's tonsils removed just to help with the PANDAS symptoms and not because the tonsils were inflamed. The only reason I am asking is because I have read of so many children with PANDAS who improved after removing the tonsils.

Edited by Vickie
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P.Mom -- Do you think that Dr. Latimer is routinely suggesting that tonsils be removed even if they aren't inflamed. My doctor (Dr.T) has not suggested seeing an ENT doctor at all. At least not yet.

 

Kimballot -- Also, my son's ASO has gone back to normal with abx, and we just ran bood work hoping his anti-dnase and mycoplasma numbers have come down. If these numbers are all normal, would there be no reason to have an ENT work up because they probably won't find anything or would you still have it done?

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P.Mom -- Do you think that Dr. Latimer is routinely suggesting that tonsils be removed even if they aren't inflamed. My doctor (Dr.T) has not suggested seeing an ENT doctor at all. At least not yet.

 

Kimballot -- Also, my son's ASO has gone back to normal with abx, and we just ran bood work hoping his anti-dnase and mycoplasma numbers have come down. If these numbers are all normal, would there be no reason to have an ENT work up because they probably won't find anything or would you still have it done?

 

got to run...but i think so...

saw her in aug...asked why his tonsils weren't out per 15 documented streps...

she did not rquire it..but if were to procede with big guns i wanted them out, not to regret in hind site

had them removed in sept 2010...thought that would be happy answer...and i think for some it is the key to healing...

however ds has not completely remitted..in current pursuit of lymes..llmd we saw thought it was good we had them removed.

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Yes...she suggests it even if your child has no problems with their tonsils. But, she doesn't require it...just strongly suggests it.

 

I have seen Dr. K, T and L. If you pm me , I can give you the skinny on them all. lol

 

GO STEELERS!!!!

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At my dd8's first appt with dr L I brought up the ? Of removing her tonsils. Dr L said she did not want to

Jump the gun but wanted to wait and see how things went. I brought it up at dd8's follow up visit and she looked at dd's tonsils again and said we should look into removing them. So, I don't think she automatically recommends it for everyone.

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