ENT consult

[Debbie1]

We had an ENT consult this morning. The doctor will do tonsillectomies if we feel that will be beneficial. The practice has done tonsillectomies on PANDAS patients before and says they have seen positive results. Bottom line is they are leaving it up to us (and Dr. L.) to decide whether to go ahead or not.

 

I know this has been asked before, but can I get some feedback from those of you who have had t&a surgeries? Would you recommend it? Is it always a t&a or sometimes just tonsils? Do you do just the PANDAS child or all of the kids?

 

Thanks for your input.

 

Debbie

[thereishope]

My son had t and a surgey in Feb this year. Only my PANDAS child has had this done and I do not plan on doing my other 2 kids unless it is suggested or they have recurrent strep. It just doesn't seem to be an issue for my other 2 kids.

 

What I would suggest it to have your child be healthy if you decide to do surgery. The ped kept pushing me to get it done even when my son was really bad off with PANDAS symptoms. My instinct told me to wait. I'm glad I did. He did awesome at the hospital and recovering from surgery for him was a breeze. I do know some PANDAS kids have a hard recovery time, but he did not.

 

What was devastating was a month after surgery, his PANDAS resurfaced and we found out he had strep again. I don't know if there is a connection between the surgery and the strep coming back. So I would suggest stronger antibiotics post surgery.

 

My son's last strep infection (post surgery) and PANDAS epsiode was in March 09. He has been strep free since then. I know there's a chance he can strep agian, but then I never know how many strep infections the surgery will prevent.

[peglem]

My daughter had T&A. She was on omnicef for a month prior to surgery, and did 10 days of augmentin after. A month later we had the biggest exacerbation ever (and we've had a lot of those). My daughter did not have infected tonsils, though- we did it to try to eradicate the strep. On the plus side- she's had very few sinus infections since then- they were chronic before.

[mk8898]

We had an ENT consult this morning. The doctor will do tonsillectomies if we feel that will be beneficial. The practice has done tonsillectomies on PANDAS patients before and says they have seen positive results. Bottom line is they are leaving it up to us (and Dr. L.) to decide whether to go ahead or not.

 

I know this has been asked before, but can I get some feedback from those of you who have had t&a surgeries? Would you recommend it? Is it always a t&a or sometimes just tonsils? Do you do just the PANDAS child or all of the kids?

 

Thanks for your input.

 

Debbie

 

Debbie -

We had our first PANDAS episode the end of May. Our son (9 1/2 years old) had a tonsillectomy at the end of June b/c we discovered that he had severe sleep apena and the ENT stated that on a scale of 1 - 4 his tonsills were about at 3 1/2.

We also got strep again about a month after the t&a surgery. His symptoms were not as severe and only lasted a couple of weeks. HOWEVER, we had just returned home seeing Dr. L and was on our second day of a 30 day steriod burst.

 

Best of Luck, Michelle

[dcmom]

Debbie- My daughter had her tonsils out mid June. She was daily antibiotics 10 days before and 10 days after. Exactly one week post op, she had her second pandas episode. We had to do steroids to get relief, antibiotics alone didn't work. I am still glad we had it done, ENT thought upon extraction that the tonsils were infected. If you go forward, I would ask for IV antibiotics at time of surgery, and maybe have a prescription for a steroid pulse waiting- if needed.

 

I am thinking it might have been the anasthesia causing a breech in the blood brain barrier- that caused the pandas this time....

[memom]

DD17 had her T&A mid August. This summer prior to removal was her worst ever after yet again another strep infection. We did not do antibiotics before or after. Tonsils in bad shape (abscessed and chronically inflamed and pitted). Pandas symptoms started improving day 10 after surgery and gradually improved until hitting a wall 8 weeks after surgery when we started month of steroids, and 1000mg Augmentin daily. We have continued to improve though as the steroid is weaned, I may go to Augmentin 1000mg twice daily to keep the momentum up. Her symptoms are better than they have been in over a year or two. She was able to feel her brain clearing daily. She hated the narcotic meds during the recovery, so went over to motrin 800mg 4 times daily about a week into recovery, and I really think it helped a ton. Because that is such a high dose, I couldn't keep her on it long term but was fairly confident she would do well on the steroids (which she has).

 

It was the one best thing we did that helped to give me confidence that we were really dealing with Pandas after so many years of dead ends. To see her improve before my eyes day to day with something so simple as this surgery was validating (as well as getting Cunningham results at the same time).

 

If I were to do it again (which I would in a heartbeat), I would be on antibiotics and probiotics before the surgery and long term full dose after. Her OCD was severe when she had her surgery, her recovery for the first 10 days was brutal. She is also older and it is more difficult the older you are.

 

Ellie

[Debbie1]

Thanks everyone for the replies. Just a few follow up questions:

 

My kids are currently on full strength augmentin and will be for the forseeable future, so antibiotics pre-surgery should not be a problem. Who do I speak to regarding IV antibitiocs during surgery and antibiotic plan post surgery (ENT or Dr. L.)?

 

For those of you who did only 10 days of antibiotics after surgery, is that the standard practice? Are you back on long term antibiotics now?

 

I'm waiting to speak to Dr. L. to decide whether to move forward.

 

Thanks again,

Debbie

[sf_mom]

Debbie I'm very interested in what Dr. L has to say. We have not pulled our son's tonsils and adenoids yet.... they are swollen but not bad.

 

However, I feel like he still has an underlying infection because every time I lower his antibiotic we see the baseline creep up (mild tics, night waking, mood liability) and every time I increase the baseline drops to symptomless within about 48 hours.... 3rd time we've done this now.

 

-Wendy

[Debbie1]

Wendy,

 

I'll keep you posted. She is the one who recommended we go see an ENT and consider pulling tonsils. Dr. Trifilletti recommended the same thing when I spoke with him on the phone one day (although we are not his patients). When they heard that we have 2 PANDAS children, they both seemed to feel that we have a strep problem in the house.

 

Can you remind me - are you on full strength antibiotics right now or prophylaxis?

 

Debbie

[peglem]

For those of you who did only 10 days of antibiotics after surgery, is that the standard practice? Are you back on long term antibiotics now?

 

I don't know what's standard practice. I think in our case, nobody involved really knew how to deal with PANDAS, or was even sure that's what it was. My daughter was not on real prophylactic antibiotics, but was on them so much from chronic strep that it was nearly prophylactic. I begged that month of Omniceph from the doctor because my hub decided he wanted to take the family to Disneyland before the t & a (what a disaster that trip was- NOT the happiest place on earth) and I was so scared the strep would come back while we were on the trip. The ENT who did the t & a thought PANDAS was a bunch of crap, that no way behavior could be connected to strep.

So afterwards, we all were assuming that this would take care of the strep and the behavior was just because her throat was still hurting from the surgery...and nobody wanted to swab her throat because it was hurting from surgery....OMG, she was a mess when we finally figured out it was the stupid strep again. (I still wonder if exorcism would have any effect on strep!) So, that's when we started pursuing the immunology and rheumatology angle. And went back on the chronic strep/chronic abx cycle again..for a few months, then went through trials of prophylaxis w/ different abx...Right now we are using 500mg of zith, M,W,F. That's going to have to change....Sundays are ######! So maybe more than you asked for- but couldn't find a short answer!

[sf_mom]

Completed IVIG 5 1/2 week ago. He has been on 250 m.g. Azithromycin since 2nd week in August. Shortly after IVIG our boy/girl twins came down with the flu twice so I doubled up on the antibiotics.... each time he become symptomless within 48 hours. Most recently, I lowered the antibiotic (Oct. 23rd), we saw slow steady increase in behavior (mild vocal tics, some mood liability, night waking)... confirmed strep in his class last week so we doubled up on Sunday, again symptomless today.

[mom md]

Just an interesting thought. We saw the pediatric infectious disease docotr yesterday and she said she felt azith was probably doing more to help because it had immune-modulating effexts than actual strep prophalaxis. She was interested at some point in time in changing him to the rheumatic fever protocol because she felt we could protect against strep better. Makes you wonder if doubling the azith dose is just suppressing the immune system? She was VERY against using Augmentin for prophalxis. She felt it was way too strong and should be in our back pocket for strep infections, not prophalaxis.

[lismom]

Just an interesting thought. We saw the pediatric infectious disease docotr yesterday and she said she felt azith was probably doing more to help because it had immune-modulating effexts than actual strep prophalaxis. She was interested at some point in time in changing him to the rheumatic fever protocol because she felt we could protect against strep better. Makes you wonder if doubling the azith dose is just suppressing the immune system? She was VERY against using Augmentin for prophalxis. She felt it was way too strong and should be in our back pocket for strep infections, not prophalaxis.

 

 

I see the same thing with our use of 750mg every other day. I could probably even up that to see less ticcing but my previous pediatrician made me so nervous about liver damage. I believe the same that this is immune-modulating. My biggest question out of all this how long will it take for the immune system to reset[i know everyone is different] and should I be incouraged with the time line that Saving Sammy had with high dose for a period of time then taper off slowly for a few more years. PANDAS seems to stretch so many ways each case has similarities and some so many differences. Sometimes the young seem to recover with less relapse, sometimes not. And the same with the kids like my son who is starting puberty. Some like sammy seem to have a course and now he is recovered. Kathy

[dcmom]

Debbie-

 

Dr Latimer, Dr Triffileti and my ent Dr Feldman all felt we should do the T&A. DD has been on prophylactic zithromax twice per week since March. She did 10 days before and after of treatment dose zith, and then back down to prophylactic. It didn't do the job. She still had an episode a week after T&A. I kind of feel the cause could have been the anasthesia and/or physical stress of opening the BBB and letting the already existing bad antibodies back through. Steroids stopped that episode. That's why, I would ask the ent (and if he says no- discuss with latimer) the IV antibiotics. I would also have a prescription for a steroid burst ready, if needed. I would still do the T&A- just be prepared...

[sf_mom]

You know our Pediatric Infectious Disease and Immunologist said the same thing.... If I can confirm RF in the next couple of weeks I'll request similar protocol. The doubled up Azithromycin seems like a lot but hopefully it won't be for too long. Dr. K seemed fine with it so far and hopefully get a clearer perspective if it continues to work.

 

By the way, we are now thinking there were 4 boys at original play date in 2007 that might be affected: My older son (confirmed Pandas), my younger son (heart involvement awaiting CaM results), my friend's son (CaM 147, Anti-DNase-B 680, ESR Elevated, CRP Elevated, his ECCO is on the 12th) and her boyfriend's son. Hopefully, we'll know for sure on 3 out of 4 in the next couple of weeks and the 4th probably after winter break as they are still waiting for Cunningham Kit to arrive.

 

 

 

Just an interesting thought. We saw the pediatric infectious disease docotr yesterday and she said she felt azith was probably doing more to help because it had immune-modulating effexts than actual strep prophalaxis. She was interested at some point in time in changing him to the rheumatic fever protocol because she felt we could protect against strep better. Makes you wonder if doubling the azith dose is just suppressing the immune system? She was VERY against using Augmentin for prophalxis. She felt it was way too strong and should be in our back pocket for strep infections, not prophalaxis.