Tonsil/adenoidectomy.

[EmersonAilidh]

When I saw my first ENT about the mystery throat infection a couple of weeks back he immediately ordered my tonsils & adenoids out but agreed to wait for my virus panel to come back before we scheduled it. He said it didn't matter, but it was important to me to figure out whether or not it was Strep or Mono. Well, keep testing all kinds of negative for strep but tested positive first try for EBV recently. Guess that answers that question.

 

Since I know quite a few people on here or their children have had them I thought I would ask you guys first since you know it from a P.A.N.D.A.S. Angle. For immunosuppressed kids like myself who get infections one right after the other, does the procedure make a difference? Is it worth it? I've had three surgeries before so I'm not scared but I'd certainly rather not go through it if it's unnecessary. I just saw someone post about an INTRACELLULAR one.. What is that? How many different kinds are there?

 

Obviously I don't know much so any information at all would be appreciated!

[PhillyPA]

Hi Emerson! So it was EBV! Glad you got answers.

 

My son, who had EBV a couple of months ago, is getting his tonsils out on Monday. I am all for it. Rip those suckers out. Those tonsils are nothing but trouble for my son. I am also going with family history. Everyone who got their tonsils out never had strep throat again.

[SarahJane]

I don't have direct knowledge of EBV...just what I've read. I know I had high "past infection" titers back in the fall, & knowing what I know now, I suspect if we tested my ds that he'd show a past infection.

 

I will say that it wasn't until ds had his tonsils out at 4.5 (had adenoids out at 3) that we got a respite from ongoing illnesses that had been going on since he was 2.5 & got his first ear infection. Then he had sinusitis a lot...never tested positive for strep during that time tho'. The break from illness lasted 1.5 years until he tested positive for strep & then PANDAS hit a month later. (Actually, as you know, it had VERY likely hit when he was 2.5, but it wasn't diagnosed until he was a few months past 6.5.) So, you can still get strep without tonsils/adenoids. My dh is 43 & has no tonsils & still gets strep. Actually our family dr (ex-family dr now)...wouldn't even test my dh because he believed he couldn't get strep without his tonsils. He'd given him Tamiflu to take until the pain continued & hubby got tested/dx'd at urgent treatment a few days later. Grrrr.

[EmersonAilidh]

PhillyPA ~ thank you! My immunologist is currently on vacation & I know he's fascinated by my throat so I'm gonna let him look at it before I go through with the surgery. Tested positive for EBV while he was gone. I am gonna do it, just not sure when at this point!

 

Sarah ~ I know it's not necessarily a cure all but I figure it wouldn't make things worse! I'm just tired of mystery infections. The ENT said that they wer DEEP pockets & having my tonsils removed would at least prevent future incidents from getting so bad.

[JuliaFaith]

Just another viewpoint. Dr. of my ds13 said that "All PANDAS diagnosed people should get tonsils out." It took us 6 mos. to finally decide to do it. My son did not seem to have any throat problems, except a perpetual sore throat. They did a deep nasal swab while he was asleep (not a pleasant experience while awake) for MaRCONS which surprisingly came back positive!

 

Now that they are out & adnoids, he is testing steady and improving slowly and Dr. predicts quicker than ones who do not have the T & A (if necessary) out. Decided to do it because we had hit the over-a-year of being ill marker. It was a tough recoup but was over (pretty much) in 10 days. His Dr. did say that a flare-up could happen after they were removed but did not notice it. Just difficult over the pain he was experiencing b/4 they were taken out.

 

Following you along and happy to see that you are finding some things out and can treat them! BEst wishes!