Jump to content
ACN Latitudes Forums

Tonsilectomy-Outcome


Recommended Posts

I am interested in knowing the outcome after a tonsillectomy. I have randomly read some pros and some cons, so I am trying to get a poll of all people here as to their first hand experience!

 

I have three questions to ask of anyone who has had this done what happened post op-cure or no cure?

 

 

1. Did it help decrease or eliminate the PANDAS/PANS?

 

2. How severe were the symptoms prior to surgery?

 

3. Who recommended it be considered or done?

Link to comment
Share on other sites

My ds 9 is having Ts & As next Wednesday! I decided to go ahead after considering the pros and cons and posting here, asking for feedback.

It seems the expert pandas Drs are split on the subject 50/50.

Little to no research available as to it's efficacy regarding pandas.

I've spoken with moms whose child's tonsils looked small and normal (like my ds) but were infected with some organism upon culture post-op.

Read the post "my life with OCD/PANDAS" tonsillectomy cured her of it (just posted today)

My ds never gets sore throats or swabs positive, yet his titers have been elevated almost 2yrs now!

Neurologist/pandas Dr siad go for it, she's seen many kids improve post T & A

ENT willing to oblige on advise of neurologist and elevated titers

All in all, I figure, what have I got to loose. It won't harm him and it may help him, and it'll be one less thing to wonder/consider. Most Drs use coblation these days (radiofrequency) as opposed to electrocautery, so less chance of burning the surrounding tissues, easier, quicker recovery, done as out-patient!

A word of caution - double up on antibiotics at least 10 days prior and 10 days post in case surgery causes flare-up and be sure to tell Dr to culture tonsills, sinuses and where ever else he wants!

I'll keep you posted on my ds's outcome!

Link to comment
Share on other sites

My ds 9 is having Ts & As next Wednesday! I decided to go ahead after considering the pros and cons and posting here, asking for feedback.

It seems the expert pandas Drs are split on the subject 50/50.

Little to no research available as to it's efficacy regarding pandas.

I've spoken with moms whose child's tonsils looked small and normal (like my ds) but were infected with some organism upon culture post-op.

Read the post "my life with OCD/PANDAS" tonsillectomy cured her of it (just posted today)

My ds never gets sore throats or swabs positive, yet his titers have been elevated almost 2yrs now!

Neurologist/pandas Dr siad go for it, she's seen many kids improve post T & A

ENT willing to oblige on advise of neurologist and elevated titers

All in all, I figure, what have I got to loose. It won't harm him and it may help him, and it'll be one less thing to wonder/consider. Most Drs use coblation these days (radiofrequency) as opposed to electrocautery, so less chance of burning the surrounding tissues, easier, quicker recovery, done as out-patient!

A word of caution - double up on antibiotics at least 10 days prior and 10 days post in case surgery causes flare-up and be sure to tell Dr to culture tonsills, sinuses and where ever else he wants!

I'll keep you posted on my ds's outcome!

 

I did read the post on OCD curing her! That is an awesome and hopeful story! That is what brought it to mind again about the TS.

My ds8 does not swab positive (at least the past 6 months) and his tonsils are not swollen either. He did not have elevated titers 7 months ago when tested. And has been DX sero negative PANS. He does n ot make antibodies to strep! So nothing is going to show up in way of titers. If that is a requirement for the ts then we may be screwed.

I will speak more to Dr M about this and see where we go. My ds has not been back to his regular Ped since we began with Dr T and Dr M. because the Ped does not understand or know much about this. Maybe Dr M can reccomend someone. Dr T did say initially that he does recommend TS...

 

Please keep me updated on how your kiddo does post op and beyond!

Link to comment
Share on other sites

1. It was a very long road recovering from the T&A as it was the proverbial last straw that caused the extremely acute onset. DS then age 4 was dx ar ate age 2.5, and T&A was recommended d/t multiple and practically constant Strep Throat accompanied by PANDAS symptomology. DS was infected with Strep at the time of the T&A. I asked x 3 for abx prior to the surgery and was told it was not necessary. All you know what broke loose after the surgery and within 24 hours I knew we were in very big trouble. Within 10 days my son was so symptomatic that I lost him to major PANDAS symptoms and he became almost non-verbal for several days. It took the better part of a year on various abx to get him back, and he only came back last July when he began a more aggressive abx combo. Fast forward - I DO think that he has improved in part d/t the T&A because he has not had active Strep in his throat and we did get his titers to normal for several months. I would do it again, but very differently, insisting upon a big sterilizing daily dose of abx, perhaps even Azith, for at least 4, if not more weeks pre-surgery.

 

2. Symptoms prior to surgery were very difficult, particularly the bx problems that arose from the OCD. DS had facial grimaces, tics and hyperactivity, but nothing compared to what happened post surgery d/t active Strep and no preceeding abx.

 

3. Pediatrician and ENT both recommended that DS have a T&A, mostly justified by the multiple Strep. I was told by the arrogant, idiot ENT "No tonsils, no Strep, no PANDAS". Clearly a poor man for the job.

 

Good luck - I think it has made a huge difference in recovery, but precautions are very necessary! -Kath

Link to comment
Share on other sites

My DS 6 got his tonsils out at 5 because they were so infected with strep they were touching he couldn't eat or breath. Well the ENT didn't send him home with antibiotics and I assumed we were done with the strep. My son suffered so bad from Pandas afterwards (when we discovered Pandas existed) his recovery time was nearly 9 months and he literally had to relearn how to ride his bike. It was awful, in hindsight I would have asked for IV antibiotics during surgery.

 

I talked to docs months later and they said when the anesthiolgist puts the tube down thier throat it can push any bacteria or infection into their stomach and go systemic. The doc told me this later, but he said he saw no risk since my son had just finished a 10 day course of antibiotics prior to surgery. Wrong

wrong WRONG... IT WASN'T ENOUGH. His strep did go systemic.

 

Side note: my ds9 has pandas and his tonsils were not touching,I did not do the T&A on him even though it was recommended for chronic strep and his pandas is not as severe as my younger child. This is just my experience.

 

1. It was a very long road recovering from the T&A as it was the proverbial last straw that caused the extremely acute onset. DS then age 4 was dx ar ate age 2.5, and T&A was recommended d/t multiple and practically constant Strep Throat accompanied by PANDAS symptomology. DS was infected with Strep at the time of the T&A. I asked x 3 for abx prior to the surgery and was told it was not necessary. All you know what broke loose after the surgery and within 24 hours I knew we were in very big trouble. Within 10 days my son was so symptomatic that I lost him to major PANDAS symptoms and he became almost non-verbal for several days. It took the better part of a year on various abx to get him back, and he only came back last July when he began a more aggressive abx combo. Fast forward - I DO think that he has improved in part d/t the T&A because he has not had active Strep in his throat and we did get his titers to normal for several months. I would do it again, but very differently, insisting upon a big sterilizing daily dose of abx, perhaps even Azith, for at least 4, if not more weeks pre-surgery.

 

2. Symptoms prior to surgery were very difficult, particularly the bx problems that arose from the OCD. DS had facial grimaces, tics and hyperactivity, but nothing compared to what happened post surgery d/t active Strep and no preceeding abx.

 

3. Pediatrician and ENT both recommended that DS have a T&A, mostly justified by the multiple Strep. I was told by the arrogant, idiot ENT "No tonsils, no Strep, no PANDAS". Clearly a poor man for the job.

 

Good luck - I think it has made a huge difference in recovery, but precautions are very necessary! -Kath

Link to comment
Share on other sites

We had T & As on both of my kids. They were 11 and 5 at the time.

12 year old was on abx before and for 10 days after. So was 5 year old.

Almost as soon as she stopped the abx(zithro), the tics/chorea began to come back. Neuro said that it was probably the result of post-op bacteremia.

 

We did another steroid burst with clindamycin, which helped greatly, but symptoms never fully subsided. Also tried biaxin, medrol, and tegretol. still didn't stop. About two months later, we did PEX, and she has been symptom free since, but she is still on 2x/week zithro.

 

Her pediatricin didn't think they needed to come out, as they weren't large or even red, but neuro strongly suggested we do both kids. When they came out, the ENT said 5 years old's were "just large and infected", but older one's were "full of pus and the most disgusting things he'd seen, ever, in 15 years of practicing."

 

In our case, I think it did touch off another episode, but it was absolutely necessary to get them out, and so far neither of them has tested positive for strep since. (over a year.)

 

I've heard from some other parents that you should add prednisone to the post op abx to prevent another episode.

Link to comment
Share on other sites

My non pandas child 10yo had a t&a in nov. She has had tons of strep. Our ent said no to Abx before and after surgery. I regret that.

 

The recovery waa rough. ots of pain. Make sure you get a decent pain med.

 

But 6 weeks after surgery she got strep throat again!

 

crazy!

 

Would i do it again? Yes. I want to do everything to protect my pandas kiddo and help my daughter from strep. Bur i woud make sure she got strong abx before and after.

 

Also there is a researcher collecting tonsils from pandas kids. There is a post in this site.

Link to comment
Share on other sites

My more severe PANDAS Son had a T&A in mid-November. It was on the recommendation of our pediatrician, confirmed by Dr. Murphy, our immunologist and the ENT as the right path for him. My understanding on the split on T&A among the experts is that the research is only 50/50 on it being a cure for PANDAS itself, the way it was explained to me is that if PANDAS is the ONLY reason for removing them, it may not be helpful, but if there's chronic infection, larger tonisls, etc...in addition to PANDAS, they should go. At least that's what we were told.

 

Our son was on abx prior to the surgery (Cefdinir), was giving high dose abx during the surgery and initially only 7 days of Augmentin (he'd never been on that prior). He was only at about 50% (at best) at the time of the surgery, having had strep in the month prior to surgery, and his sister tested positive the week of the surgery.

 

We saw a 100% elimination of symptoms immediately after the surgery. Surprisingly, his culture on the tonsils came back negative, so the ENT didn't continue the abx, but our pediatrician and Dr. Murphy agreed he should continue, so he went on for another 60 days (initially at a lower dose). About 10 dyas post op he develped one new tic (immediately uped his abx dose). That was his only symptom for about 6 weeks. All of his OCD, ADHD, ODD, everything - was gone. Neighbors and friends couldn't believe he was the same kid they've known for the last two years.

 

This lasted about 6 weeks. We noticed the hyperactivity came back over Christmas - but we had also driven 20 hours to New York and were crammed in my in-laws small house with lots of sugary X-mas fun. Unfortunately, on our return, the OCD and bedwetting crept back in and he tested positive for strep. He's now had 2 confirmed infections since the new year. His symptoms are definitely less severe than prior to the T&A.

 

It was such a sucess initially, that we had our mild PANDAS daughter's done two weeks after his surgery. She had a strep infection at the time of the surgery, and we only did a week of abx post-op, and she has been better. She's mild, so we haven't seen as much of a difference in her.

 

Eventhough my son got strep again, so all the gains that we made are now been set back, I would absolutely do it again in a heartbeat. It was worth it to have the 6 weeks that we did. And it also showed me that we were not living with a new "normal" (we were beginning to question the ADHD specifically and if maybe that was something non-PANDAS related.)

 

Some folks got worse with T&A, and I would recommend that you insist on injection of abx during surgery and at LEAST 30 days post-op. Chronic infection is still our issue, removing the tonsils gave us a 6 week break from 2 years of constant infections. Now it's on to the next step in our journey to try to figure out why he looks so good on paper (awesomely normal labs all the way around!!) yet swabs positive at least every 6-8 weeks!

 

If you want more details on our amazing initial recovery - look at some of the topics I started in November/December, I updated on our progress quite frequently.

 

*EDited to say injection of abx - dindn't mean to imply IV - my bad.

Edited by airial95
Link to comment
Share on other sites

With all due respect, I do not believe that a tube can push bacteria down one's throat and cause a systematic infection. My thoughts on this doctors comment should come as no surprise since we question the things doctors tell us on this forum all of the time. That doctor's theory seems to be to be pure hog wash. Some doctors say weird things.

 

I do think that a child should have iv antibiotics during surgery and antibiotics after surgery.

Link to comment
Share on other sites

What on earth does "go systemic" mean, and how does one test for this? I truly think that one of the more logical things our pandas doc told us was that the surgery is very inflammatory ( healing from it) and this it's not to be unexpected to see a flair.

 

 

By "go systemic" I think she means bacteremia.....

 

http://en.wikipedia.org/wiki/Bacteremia

 

 

Apparently it's pretty common during surgery. I think that's why they generally avoid surgery when there's an active infection.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share

×
×
  • Create New...