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Tonsillectomy? I am so torn...


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DS16 had a PANS episode last Sunday (extreme anger, threatening to hurt himself or others, screaming, scrunched face). It only lasted 10 minutes, which is a far cry from his episodes years ago. The Thurs. before he complained of a sore throat and Friday he had a red ring around his mouth. Both of these mild symptoms we have identified as his presentation of strep. Sure enough, we checked strep blood levels (ASO and Anti-DNase) and they are both elevated. ASO is always elevated, but the Anti-DNase is sometimes normal.

 

We have aggressively treated for everything under the sun since April 2011. He has been consistently on IV combo abx since Jan 2012 and started monthly HD-IVIG Jan 2013. How could this child get strep? The doctors and I think he is carrying it, perhaps in his tonsils.

 

I know many of you have gone down the T&A path already and for some reason I am dragging my feet on this. Being 16 I am told the surgery will not be a walk in the park for him. I never belabored the decision to put a central IV line in or start IVIG, both big decisions. So I'm not sure why I am uncertain about this one.

 

Needing encouragement here.

 

Also, for those of you that have had T&A done, do you know if insurance will accept a chronic strep dx from just blood tests? He has not had the typical strep throat dx that usually would justify the procedure.

Edited by mdmom
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I can't help with the decision about whether to do it or not because it's still on the table here for my DD. I can tell you that I did have a tonsillectomy this past summer at 39. It was definitely miserable, but part of that could be because I discovered several days in that I could not tolerate the narcotic pain relievers. My doctor OKed ibuprofen for me and it made a world of difference in pain relief. Also, ice pellets from Sonic were my best friend during recovery.

 

My insurance approved it based on a single elevated ASO.

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I think the scary part for us as parents is to purposely cause lingering pain.

 

IVs hurt most only when things are inserted (pic line, needles etc).

 

I had adenoid removal when I was 14, because I could not breathe through my nose, at all.

 

Post surgery, I had a nasty reaction to the anesthesia, and also had sores in my mouth. But I was old enough to understand that the pain would pass and I was REALLY excited at the possibility of breathing and speaking normally.

 

I remember that as yucky as I felt I was so happy that things might be fixed.

 

In retrospect, it's similar to how I feel each time we have something new to try with DS.

I ride this optimistic/happy wave until we see that it is another microscopic advancement and not the big break.

 

T.Anna

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I would get them out. I know of mulitple people (specificlaly one adult- a mom of a PANS kid who has moved on form the forum) who got them out- they had been on the fence about taking them out & when they were cultured post-op they had strep, and more organisms growing in the tonsils.

I would think your son may definitely benefit from getting both t & a out.

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DD4 just had hers out Aug 29 and I can say she is in 100% remission since! Granted, it hasnt been that long but WOW she is a different child all together. They cant even believe the difference in her school.

 

The pain was horrific and it was like having a newborn baby giving meds around the clock and screaming at night. It did take a whole two weeks to recover. TOTALLY worth it in our case.

 

Our PANDAS ENT was thrilled for us when I told him he cured her. He said, you know I didnt promise you that, but Im so glad it worked! He said hes seen some kids resolve PANDAS, some get better and then go right back, and some get worse.

 

As we all know, insurance wont cover T and A for PANDAS. DD had huge tonsils so the Dr. ordered a sleep study in hopes that those huge tonsils were causing sleep apnea. I was certain she didnt as she was a very quiet sleeper. Low and behold, she had sleep hypopnea where she goes into hyperventilation 9 times an hour. Definitely met criteria for T and A.

 

Our insurance will only cover T and A with 6 strep infection in one year. We can show that bc our kiddos have been on abx which can yield false negative results. The titres are not accepted as diagnosis as far as insurance coverage is concerned, but every state and policy is unique so definitely explore.

 

My DS8 has it BAD and Im desperate to take his little tiny tonsils out....What are the chances? Ill let you know, we had the same sleep study done on him this past Sunday. Praying for Apnea! I would do the surgery in a second for him.

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