Tonsillectomy & PANDAS

[browneyesmom]

I spoke with someone yesterday (another RN, she's an MSN) who said she had personal experience with PANDAS, although she would not comment if the child was her own. She was adament that tonsillectomy is the appropriate treatment as "strep causes PANDAS and tonsillectomy will help prevent strep". She indicated that in this case, after tonsillectomy, behaviors improved (I queried if it was only behaviors she was seeing rather than also physical symptoms such as nocturnal enuresis, hallucinations, decline in academic skills, loss of short term memory, etc, but she felt those could not be pinned on PANDAS; I disagree). She was stunned that we had not been referred to an ENT for evaluation yet. I got the distinct impression that the same pediatrician was involved in her case as well as ours by the comments she made.

 

Of course, each case is different and I have read on NIH website that tonsillectomy is not suggested for PANDAS kids currently. I've seen similar information on Dr. K's website. However, there are also research studies that indicate tonsillectomy is helpful.

 

Has anyone here gone that route and if so, what has been your experience?

 

If you don't mind, please share how many infections in a certain period (this nurse was also adament that only the past year's infections are significant, but I got a different impression from Dr. K... maybe she's thinking for determining tonsillectomy and he's thinking for determining PANDAS) and if you did see improvement afterward or not.

 

Thanks!!

[cwmom]

I am actually a Pediatric Nurse Practitioner and chose tonsillectomy and adenoidectomy for my child. The ORL surgeon we sought ( because he had experience with it) has done about a dozen T&A's for PANDAS kids and notes improvements in all-- to varying degrees. I have found with PANDAS in general sometimes you have to weigh the risks and benefits--

I feel for my childs case it was very worthwile however I realize that it may not be for everyone

good luck!

[colleenrn]

Two of my four children have had a tonsillectomy and adenoidectomy, with good results.

My 12 1/2 year old daughter had a T & A just after she turned 6 (her PANDAS symptoms abruptly began just after she turned 5). After about 9 months of repeated strep (whenever she stopped antibiotics) I started to pursue whether or not to get the T & A. I had seen Dr. Swedo and her partner at the time, Lisa Snyder, a few months prior. At the time they did not encourage a T & A, and that summer I called and talked with Dr. Snyder, who tried her best to talk me out of getting it. I am a nurse and I could NOT understand why they were so adamant about not doing it. My pediatric ENT, based on # of strep infections and by seeing her large tonsils, agreed it was warranted. When he removed them, he commented that they were the size of a large male and no amount of antibiotics could have gotten into the crypts and pits in her tonsils. Post T & A, she was symptom free/strep free for a solid 18 months, at which time she woke up one morning with the tics and OCD back. NO physical symptoms, neg rapid, culture grew positive and my doctor wqas floored b/c he did not think she had strep based on no physical symptoms. That was 4-5 years ago. We have ups and downs. I am confident it was the right decision. I feel I made a HUGE MISTAKE by not doing antibiotics prophylactically afetr the T and A. At the time, I did not know what I know now and would never have left her off antibiotics.

 

I had my second child evaluated by the same ENT b/c starting around age 2-3, he snored a lot and whenever he was sick, especially with strep, he had sleep apnea. The sleep apnea worsened as his strep infections were more frequent. Just after turning 5 he had a T & A. Again, the doc said his tonsils were huge and very cryptic. I think he has faired better for 2 reasons: 1. he is not vaccinated except fort polio and 2. he had his tonsils and adenoids removed sooner than his siter.

My 3rd child has large tonsils, no sleep apnea, but snoring getting worse. His strep started prior to age two. It is my plan, soon, to have him evaluated b/c he also has huge tonsils.

I am not suggesting that all PANDAS children have T & A's BUT if your child has a similiar situation to mine, it is something to seriously consider. When the tonsils are cryptic (full of holes and pits), the antibiotics get rid of enough strep, but not all. When you stop the antibiotic, the little bit of strep that is left just recolonizes, causuing another infection. At the time, we never tried Zithromax, which is much better at penetrating through to the strep. Prior to the T and A, Amoxicillin, penicillin, Augmentin and Keflex stopped working. Out of desparation i begged to put her on Clindamycin, which helped, but even with that, I could see the strep stuff coming back. This is why I believe that Amoxicillin, penicillin are not the right choices for PANDAS kids, b/c it does not penetrate through to the strep. Strep can also hide in the adenoids, which are very hard to culture. I would start by going to a pediatric ENT and having an evaluation. Please let me know if I can answer any questions about my children's T and A.

Good luck!

Colleen

[peglem]

Here is our experience with T&A- copied from my response to another thread:

My daughter had a tonsilectomy. She had chronic strep, or I suppose what would be considered carrier status. Anyway, it was assumed the T&A would rid her of the strep problems, so antibiotics were discontinued 10 days after surgery. Well, it didn't take care of the strep and while she was healing you couldn't exactly swab her sore throat. So, symptoms did flare...the worst I can ever remember her being. So, if I had to do it again, knowing what I know now, I wouldn't do it. But, not knowing what I know now, I'd do it, but keep up prophilactic antibiotics, at least until the throat is healed enough to swab again. This is only my experience. I know that tonsillectomy has worked out well for some. My daughter never had swollen, inflamed tonsils though. On the plus side- she no longer deals with constant sinus infections, so it wasn't a complete waste.

[Dedee]

We also chose to go the tonsillectomy route. My son had PANDAS since age five with only OCD symptoms. He had been on SSRI therapy with fair control until age 11. That winter he had strep four times in a short period. The fourth episode resulted in explosive tic disorder and of course his OCD and emotional issues had worsened. At that point my husband and I made and independent decision (I am an RN), and went to an ENT and requested the T&A. We didn't have any problems because his tonsils were huge and the ENT agreed they should come out. He did beautifully and it was while he was taking the post-op antibiotics that we noticed the tics and other symptoms would disappear with antibiotics and then return when the antibiotics were stopped. With our pediatricians assistance we actually did this a couple more times with the antibiotics to make sure we were accurate in our observation. Sure enough, he was very predictable about behavior and tics when starting and stoping the antibiotics. That was what led us to seek out Dr. Murphy for a more detailed treatment plan. Our pediatrician said she would write the prescriptions if I could get her a confirmation from a specialist in the field that this was an appropriate therapy. He has done wonderful since that time. We have had very minimal issues since the T & A and antibiotic therapy. I personally believe he was never able to get rid of the strep from the tonsils. The ENT said they were extremely "pitted" when he took them out and he felt like it was the right thing to do. It is a very individual decision. You read varying reports. I only say what we did and how I feel it worked for us.

 

Dedee

[bronxmom2]

I am following this thread with interest because we are hoping to get my ds (6.5) in for a T&A next week. My hopes are not high that it will "cure" the PANDAS but I don't see much of a down side.

 

The message I am getting here is that I should be adamant about continuing the antibiotics afterward.

[EAMom]

Does anyone have any information on whether T & A will have an impact on strep carriers? Our ped recommended that our younger dd (non-PANDAS we assume) have her tonsils out, might make her less likely to be a strep carrier. Her tonsils are normally a bit big. She doesn't tend to get any symptoms with strep, but will test positive (appears to clear after a course of Azith.). I think she gets reinfected from school. She tested positive in October and again in December.

 

Our PANDAS dd does react when her sister is positive.

[browneyesmom]

THANK YOU for all your input ~ you guys are are great source of information!

 

The same nurse called me today and indicated that she did more research and found that it is no longer recommended to have a tonsillectomy for PANDAS. However, reading this, it sounds like it depends... if the tonsils are enlarged, it may well be worthwhile. As I mentioned earlier, each case is different.

 

Thanks again for your input as I muddle through this maze...

[T_Mom]

Does anyone have any information on whether T & A will have an impact on strep carriers? Our ped recommended that our younger dd (non-PANDAS we assume) have her tonsils out, might make her less likely to be a strep carrier. Her tonsils are normally a bit big. She doesn't tend to get any symptoms with strep, but will test positive (appears to clear after a course of Azith.). I think she gets reinfected from school. She tested positive in October and again in December.

 

Our PANDAS dd does react when her sister is positive.

 

 

Hi EAMom, when your PANDAS dd "reacts" when her sister is positive for strep is it OCD type of reaction, pupils?, and does she test positive for strep herself then at the same time?

 

My own daughter has had very slight flare-ups corresponding to when a classmate was positive with strep. Her pupils were huge and struggled with more OCD "stuff." --though she does not test positive for strep, she seems to react when exposed.

Thanks,

T.Mom

[ad_ccl]

My son had his tonsils out at 2 after chronic infections. He had no tics at that time. He was diagnosed with PANDAS 4 years later after a sudden onset of tics.

[AmySLP]

I'm metting with the pediatric infectious disease team today at Upstate Medical Center, Syracuse NY, for exactly this question. My pediatrician is adament that T & A is the answer (the ENT doesn't agree but willing to do the surgery based on the opinion of the immunology team). So I'll post my answer when we return today. I expect a good work-up, since the paperwork says to expect a 1 1/2 - 3 hour visit. We are scheduled for a T&A on April 1 (previously scheduled for Dec. 3rd but I cancelled after reading the research which didn't support it).

 

I'm getting to the point where I'll try anything, even surgery, which scare me before. My daughter is doing well on the prophylactic ABX currently-Thank god I found this website and knew to request that from the pediatrician. Allison has not needed a strep test for over 5 weeks-this is the longest she's ever gone without getting "the stick" as she calls it! If I had only known to do this in late fall, I think the facial tics that are still present (although reduced) may not have developed at all.

 

I have gotten so much infor. from others medical consults on this forum, I hope I return with some hopeful news.

 

Amy

[pmoreno]

For anyone who thinks there's no downside to a T & A, you have to remember that it is still surgery. There are always risks associated with that. Although I had briefly considered this for my daughter (she has enlarged adenoids), after much research I have concluded that it is only indicated in a small number of cases. If the child has enlarged tonsils or adenoids and the strep is being harbored there, so much so that regular courses of antibiotics can't clear it up, then it would make sense to go that route. I think that's pretty rare though and I have read that many kids after having T & A end up with strep again because it doesn't guarantee that they won't get it.

[Diana]

Dear folks - There are some new strains of strep, according to leading streptococcologists (spelling??) Debra Bessin and Ed Kaplan - that can only be stopped by Keflex or Azithromycin. The new strains (M/18 and other?) have grown an awful "mucloid sheild" around the bacterial structure that are impenetrable by pencillin. All that Colleen says re: T&A is just right on.

 

I asked docs about the whole re-colonizing thing with strep and the belief is PANDAS kids are only having an autoimmune reaction. That what they have done in petri dishes indicates that strep with abx will be killed off. I asked - how do you know for sure it is not intracellular. They said, "well, we don't know for sure. The only way to know strep is gone or to get the strain from the body is via tissue sample or prompt swab."

 

So, it is possible, that strep can be hiding in the crypts (like Colleen said) of the T&A and even after then - even in the sinus cavity somewhere too. But getting rid of the juicy T&A especially if periodically swollen - seems to be agreed by the many docs I've talked to - a wise choice. AGAIN, only if the T&A have given the child some trouble.

 

Knowing what I know now about PANDAS now - I am so glad I had my son's T&A removed. It was easy for me to decide because they were swollen badly. The Stanford ENT that removed them, Brad Hindricks - said an ENT friend of his (a doctor) - his child developed PANDAS and they promptly did the T&A. It helped control the repeated strep assaults.

 

This illness can truly hurt a child's brain - a parent's wisdom is so crucial here. Docs know only so much - you know every iota of your child's disposition. Garrett, my son, did IVIG in September - he is nearly free of every symptom now - we believe full "conversion" will occur very soon. There is no more anger, hyperactivity, learning issues, etc. All gone. Now only anxiety about getting to school - and that is diminishing with increased abx this week. Take care, diana

[EAMom]

Hi T. Mom,

 

Dd has reacted when sister has had strep (2x) this school year and also when PANDAS dd herself got fifth's dz last month. Each time the response has been relatively mild, nothing full-blown like last spring.

 

With sister's strep infection she had several tantrums (over weird things, she would meltdown, and then be normal) and a return of some of her "measurement" movements (a complex ritual where she touches her back bone...a way of checking to see if she is "fat"?...maybe more a complusion vs. a tic) returned. She would do this movement mainly during and after eating. Her verbal tic (a subtle throat sound) also returned.

 

With the fifth's dz (over president's day week) we noticed some restrictive eating (getting "full" early, announcing she only wanted 1 piece of toast for breakfast, etc.). She was/is down 2 pounds from a 2-3 mo. ago. She also had some increased anxiety and her verbal tic became more promiment (throat sounds). She was getting some eye testing done in the weeks before and after she was sick with fifth's. The eye docs noticed she was much more anxious the week after fifths. They also noticed that for some of the tests she would repeat her answer (single word) twice and they thought this might also be a verbal tic. She still has the verbal tic (throat sounds) but otherwise (anxiety, eating) seems better. Currently, her handwriting even worse than it normally is...I don't know if that is the PANDAS.

 

Her mood remained pretty good throughout these episodes...maybe that was the prozac (she's on 10mg/day). I do think the Azith. helped keep things from getting full-blown.

[DawnMCH]

Diana, do you have a link to an article about this? I googled it (after changing the spelling to Bessen), but only found one thing about strep that was way too complicated to understand!

 

Is there anything I can share with my doctor?

 

Thanks, Dawn in Ohio