Kids who got worse after Tonsillectomy...

[eljomom]

Our pandas doc, who has been all over the map with our treatment, has been saying to pull dd's tonsils for months. This based on dd never having confirmed strep. And ENT saying he'd pull them because he does that for pandas kids our pandas doc refers, but they sometimes get better, or sometimes not, and it's not a "cure." He also scoped her in the office and said her tonsils are small.....1 on scale of 1-4.

 

So I have heard a few people say the tonsillectomy did not help, but even made things worse. My husband says "we have to do what the doctor says....let's pull them." I am not so sure. I am afraid of making things worse. I told him I'd heard from a few parents who's kids have gotten worse after tonsillectomy. He wants to see what they said, and I thought it would help me if you all could reply to this thread so I could show him, rather than just dig and search my 3000+ e-mails in my inbox.

 

Thanks!

[peglem]

My daughter, age 12 at the time of removal was on treatment dose omnicef for a month prior to T&A, and 14 days of amox afterwards. Her tonsils were not inflamed/swollen and she showed no typical symptoms of strep- no fever, no sore throat. She did have many, many positive rapid swabs whenever she was not on abx. After finishing the amoxicillan, we assumed she would no longer get strep so no abx was given and no swabs were done for several months. (Plus, nobody wanted to swab her throat when she was recovering from the surgery.)

 

After T&A she had the worst PANDAS flare we have ever,ever seen, and we have been dealing with this for a very long time.

[JAG10]

I recall reading several responses on this board where the ENTs were unimpressed with our kid's tonsils upon office exam only to later be appalled at the indicators of chronic infection upon removal. This was the recent case for my younger dd8 last Sept., though her tonsils were large. Dr K examed her and recommended their removal. He did some maneuver with her chin and made some comment about the movement that indicated her tonsils needed to come out. He saw something the ENT could not appreciate, but he removed them on Dr K's word. After the surgery, ENT admitted her tonsils were a mess that he could not appreciate upon office exam. I remember being impressed that whatever Dr K did and saw....he knew what he was looking for in a pandas kid. So, if your pandas doc says take them out, but the ENT can't see why, perhaps the pandas docs, either clinically or instinctually, are seeing something the others are missing.

 

BTW- with abx before, during and after, my dd8 had no increase in symptoms and continues to be managed with prophyl abx. My older dd11 happened to have hers removed at age 5 but it did not prevent WHAM episode at age 7. Of course, we knew nothing of pandas then, so she went completely untreated. You would never make that mistake.

[beeskneesmommy]

My son started with high fevers around 18 months, when he really didn't have a lot of language to express pain or discomfort in specific areas. By age 2.5, he was finally tested for Strep d/t sudden onset of eye tics following one of these typical fevers. There then ensued a huge series of medium to low grade fevers, + Strep (rapid and cutures), antibiotic treatment, eradication of PANDAS symptoms, then all over again after a couple weeks. This lasted for about 1.5 years. He generally did NOT present with severe sore throat, impressive redness or enlargement of the tonsils. Due to the huge history of Strep infections, our ped felt that it was medically justified to have a T & A done and we hoped that it would eradicate the PANDAS for good. Unfortunately, he was not given a sterilizing course of abx prior to the surgery (although I informed the ENT x 2 that he had an active Strep infection and requested the abx). Shortly after his surgery he had a massive acute episode that sent us charging to Philadelphia for immediate help with a PANDAS specialist as there was noone in the Raleigh area that could help us. I feel that in the long run, as he is recovering quite well now, it was a good choice to make. HOWEVER, I would never allow it to happen without major abx precautions and being prepared ahead of time because he was so terribly ill with PANDAS symptoms afterward we literally lost him for 3 days. He was glassy eyed and when he did speak, made very little sense. The ENT did tell us that his tonsils had many crevices in them in which the Strep was hiding and that he likely had Strep all of the way thru for a couple of years, and the abx just "hid" the symptoms for a couple of weeks in between Strep flare-ups.

[kimballot]

I think there are a few things to consider with tonsillectomy.

 

1. You don't want to do it if it is not necessary. That is - a tonsillectomy should not be a knee-jerk reaction to PANDAS as it will not cure PANDAS.

 

2. You don't want to avoid a tonsillectomy if it is necessary. My son is one of many children on this forum who achieved long-term (several year) remission after removal of tonsils that were found to be quite full of hidden crypts and bacteria upon removal.

 

3. You should ask the doctor about "sterilizing" the tonsils by using strong antibiotics before, during, and after surgery. Some folks even do oral ABX before, IV ABX during, and oral ABX long-term after. I think this is why my son did so well with tonsillectomy while some others did not - he had several weeks of strong oral ABX before, during and after.

 

4. Tonsillectomy will NOT prevent strep throat (although it may decrease the frequency if the tonsils are harboring strep).

 

5. Tonsillectomy will NOT cure PANDAS/PITAND. Once a child has PANDAS/PITAND s/he can have an autoimmune response with ANY infection. So... those sinus infections and viral infections can still trigger symptoms... and any underlying lyme will still be there to stir things up.

 

Overall- we are very happy that my son had the tonsilletomy. At that time, his tonsils were the source of his infection and he was having a major exacerbation. He spent the next few years recovering and was at about 95% recovered when he developed a sinus cyst and ongoing sinus infection that threw him into another major exacerbation and his immune system went haywire - we are trying to fix that now with IVIG.

 

Best wishes on your decision -