Anyone not doing tonsillectomy?

[momcap]

I just booked DS7 for a tonsillectomy and now I'm having second thoughts. Is anyone NOT doing this, and why not? I haven't done my research yet, but it doesn't seem right to remove part of the immune system in a child with an immune issue. The ENT assures me the literature indicates that it doesn't make a difference. I don't know. I believe we've been fighting the same strep infection since January. Despite many antibiotics (penicillin, amoxicillin, azithromycin, augmentin) his ASO is still high at 539. (We have a baseline of 27 from an ASO drawn before January, so he doesn't just run high numbers.) The strep seems to move back and forth from his sinuses to his throat. I'm also wondering if it's in his gut. Any advice? Thanks!

[dcmom]

Both of my girls had T&As.

 

Both tonsils were FAR WORSE than the ENT expected once removed. Enlarged, "juicy", cryptic, etc. Obviously infected and/or damaged.

 

One of their's appeared enlarged prior, the other's appeared totally normal prior.

 

I am glad they are gone- possibly they could have been harboring a current infection.

[thereishope]

Well, my son had his tonsils removed and I don't regret it. Now, from my own personal experience, when I was a child I got tonsilitis (possible undiagnosed strep) A LOT. The fad back then (1980's) was to not remove tonsils because they were an important part of the immune system. So, I kept my tonsils. As an adult, I still have issues with them. They are large, I get food stuck in them, etc. I wish I had them out as a child.

Edited November 22, 2010 by Vickie

[peglem]

We did remove tonsils several years ago, when we didn't really know what we were dealing with yet. I mean we thought PANDAS, but only had the old NIMH site for treatment advice. Maybe if we'd kept up the abx it wouldn't have been so bad, but we ended up with the worst exacerbation ever following the tonsilectomy. But, I have to say, what I mostly hear from posters on this forum is good, helpful experiences w/ T&A so I think my experience was an exception. Still, I'm not sorry we did it- we were desperate and just trying to do anything that might help. If we hadn't removed the tonsils, I'm sure I'd still be wondering if we'd done enough or if that would help. My daughter was already in pretty bad shape when we did the tonsilectomy (PANDAS symptoms raging), so the advice I would give is to try to get your child in remission and free of infection before/after- plenty of abx.

[airial95]

Well, my son had his tonsils removed and I don't regret it. Now, from my own personal experience, when I was a child I got tonsilitis (possible undiagnosed strep) A LOT. The fad back then (1980's) was to not remove tonsils because they were an important part of the immune system. So, I kept my tonsils. As an adult, I still have issues with them. They are large, I get food stuck in them, etc. I wish I had them out as a child.

 

Vickie - that's really interesting. I used to get strep infections 6+ times per year (turned out my sister was a carrier) and was hospitalized on more than one occasion as a result but our pediatrician told my mom the same thing - that I'd somehow be worse off if we removed the tonsils!

[PhillyPA]

My son has never tested positive for strep with a throat culture in his life. His doctor said not to bother getting his tonsils removed because it is obvious he doesn't get strep there. It is in his sinuses.

[JuliaFaith]

We were told recently by an ND that my ds should have his tonsils removed. She really had no history to go by and was just saying this up front because typically there is strep involved. My son has never tested positive for strep, but has been sick for 8 mos. His MD and ourselves have decided not to take out tonsils, at least for now. He was diagnosed with a sinus infection at the beginning of this, but never had one before or since.

Edited November 22, 2010 by JuliaFaith

[Stephanie2]

We are not doing tonsillectomy with our pandas boys b/c we have been able to get on top of strep with antibiotics and anti-inflammatories. If, however, we were not able to bring titers down then I would consider it.

[Joan Pandas Mom]

My son had T&A Dec. 2009. We had the same experience as dcmom. They were much, much worse than the ENT had thought. He also had a negative throat culture about 2 weeks prior T&A, but ENT thought there was definitely strep in them. I'm glad they are out.

[kimballot]

My son never, ever had a positive throat culture - always sinusitis and unable to take him off ABX. AT 7 years old we just stopped the ABX because his body was a mess and we did not know what else to do. His tonsils turned white a few days later. We had his tonsils removed and discovered he was harboring bacteria deep in the tonsils. Sinusitis and PANDAS symptoms calmed down for several years afterwards, but returned this year with sinus cyst.