TONSIL REMOVAL?

[T_Mom]

OK, this 'opinion statement' by Jory Goodman M.D. was posted in an earlier thread by Alex...and I just read it.

 

WOW! This psych. obviously has an opinion on the history of the "political conflict" involving the various researchers...and is not afraid to say it.

 

I think this is well worth the read, if only because it is interesting!

 

He believes that tonsil/adenoids are a key issue!!! --and says this is recognized internationally. Do you think this could be the KEY to quelling Pandas reactions? Has anyone had this effect?

 

http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain

 

...here is a quote from the article:

"...P.A.N.D.A.S. was first identified in the late 20th century. The literature internationally has grown exponentially over the past decade. This is a formally acknowledged disorder in virtually every country with modern medicine, from Finland to New Zealand, Japan, Western Europe, South America, you name it. It remains "controversial" in the United States for political reasons. The two primary political reasons are firstly that the crowd at Harvard and Johns Hopkins bristle at the notion that someone other than they discovered something in vigorously denied the existence of this until about 2006 when Harvard tried to claim that they discovered it to the vast amusement of the world medical community. Secondly, the NIH has been slow to formally acknowledge it and continues to keep it "under investigation" because of pressure from the insurance industry. Since the international recommendation for the treatment of P.A.N.D.A.S. is tonsillectomy it should come as no shock to anyone that the insurance industry in the United States is not eager to have a mandate imposed that would return us to a time when tonsillectomy became rather routine as opposed to exceptional. But I have myself out of order here so let me get back on track...."

 

(I recommend reading his entire opinion!)

Edited September 28, 2011 by T.Mom

[eljomom]

I actually followed this thread with Dr. Goodman....in fact, at one point, I felt he may have enough of a grasp on pandas that maybe he would be a good doctor for someone local to see. He does say, in the thread of comments, that flairs will still occur even after tonsillectomy. That sort of let the air out of my bag. At first, it sounded like the be-all end-all, given what was being said. And it made sense. And there were real patients with real success stories. But when questioned further, Dr. G does say that there will still be flairs when exposed to strep.......

[peglem]

The only thing T&A solved for my child was chronic sinus (presumably) problems- but I suppose that could have been the abx as well.

[airial95]

We see Dr. Murphy, and have a pretty PANDAS knowledgeable ENT. Both of their opinions is that T&A is not a "cure" for PANDAS, it may help in the cases of chronic exposure/exacerbation, but it does not change the underlying immune response to strep. Dr. M doesn't recommend it unless there is other reasons for it - she doesn't suggest it for PANDAS treatment alone, nor does our ENT (or our PANDAS pediatrician for that matter).

 

We saw our ENT last week (as my PANDAS son is now headed for T&A!) He explained it this way, in some folks (PANDAS or not), the strep hides in crevices within the tonsils, where abx can't reach. In normal kids, this manifests itself with multiple throat infections and ultimately T&A. In PANDAS kids, it results in motnhs, even years long episodes that wax and wane with the abx. (My son's case, we've gotten him back to 95% at times, but he's never been able to go longer than 6 weeks without full strength abx before a positive culture comes back again.) In these cases, long term abx have limited impact because they're not getting to the root of the problem (the infected tonsils). IVIG and other treatments may help, but if the infection isn't removed (T&A), relapses are likely.

 

In his opinion, the T&A is one step in the process, one piece of the puzzle. For our son, it may break our cycle of infection where we can see some long term improvement from the abx. If not - then we may still need to pursue IVIG, etc...

 

However, he said (as did Dr. Murphy), that the research is about 50/50 on T&A being the thing that solves the puzzle. Future episodes may still occur, they may be more minor (treatable with abx alone), but they could also be worse. They both say that there's just not been enough research done on the case.

 

If you take a straw poll around here, what he says sort of rings true, there are some folks who have had tremendous success with the T&A, and others where it sent them back into the bowels of hades.

 

I'm sure I've oversimplified what he said...but the gist is there.

 

(A note on our ENT - although he won't remove the tonsils for "just" PANDAS, he's very quick to remove them in PANDAS kids for any other reason - even sleep issues...I think he knows it's important, but doesn't want to give parents false hope - and run afoul of the insurance gods! )

Edited September 29, 2011 by airial95

[sebrown1126]

Tonsil and adenoid removal is what STARTED our whole issue with PANDAS and autism. Our son was neurotypical before his surgery to remove tonsils/adenoids. It has taken 3.5 years to get him back.

[dcmom]

Tmom-

 

Both of my girls have had a T&A.

 

My older daughter had her surgery for sleep apnea. She had strep throat in 1st grade (2 years before pandas hit our family). After the strep, her tonsils were enlarged and she was gasping for air while sleeping. She had her surgery, and her doctor said her tonsils literally fell apart they were so infected. Recovery and the next two years were uneventful.

 

Her sister contracted pandas due to strep 2 yrs later. Upon my research, and the advice of our two neurologists and ENT we opted for T&A. Prior to her surgery, she was recovered from her first pandas episode. Her tonsils were unremarkable on exam, but on removal the doctor commented that they were large, pitted and infected. Unfortunately, even though she did antibiotics daily for 10 days prior, and after, she had a second pandas episode within a week of surgery. (due to the surgery- in my mind).

 

So, my thoughts on tonsils:

 

I am glad both girls have had the procedure, it is behind us, and I don't have to think about it. But, after having an episode caused by T&A (and hearing this from other parents) I would not, personally advise a T&A unless you have one of two situations: 1. chronic pandas issues, 2. chronic strep. In other words- if it ain't broke, don't fix it. T&A has not stopped my kids from having strep (although only once, and twice since T&A), and it has not stopped them from having pandas episodes. However, we do not have chronic strep, and we are able to get to remission in between pandas exacerbations (although our baseline has slipped a little).

 

Also- Dr Murphy has a recent paper indicating something about a high percentage of kids with pandas already have had T&A, and she doesn't necessarily suggest it. So I would look at that paper (in more detail than I did).

 

If I had a kid with pandas that wouldn't go into remission, or with chronic strep- I would strongly push for T&A. There is some medical evidence that it does reduce the number of strep infections in a child- so of course, that is a major plus for pandas kids. There also is one case study in print about a case of pandas that went into remission due to T&A.

[T_Mom]

Thanks everyone for the responses--interesting to read.

 

Could it be that the Tonsils and adenoids do something else, or "hold"-- or filter something other then strep???

 

-- In other words, if the tonsils act as filtering agents, could it be that their function is critical somehow, or gone awry in Ps kids?

This is total speculation:)

 

My girls have never had a "tested" strep. Though they get sore throats, and react otherwise as Ps.

 

IF T/A were possibly contributing agents, or malfunctioning in these kids???....

sigh.

[momcap]

My DS8 is making AMAZING progress right now (OCD and germaphobia almost gone, verbal tics completely gone, able to attend school, etc). He started supplements for lyme at the beginning of July, then he had a tonsillectomy August 4th, and then switched to different and higher dose antibiotics for lyme the next week. So who knows which is what. I don't care. I'm just so excited to see him returning to health! He had a bad reaction to the anesthetic - ripped out his I.V. and was thrashing around inconsolable for an hour. I was really worried that it had triggered a bad exacerbation, but after the anesthetic wore off he settled and he did not have a PANDAS episode.

 

We added Bactrim to his lyme treatment last week, targeting bartonella. He got really agitated and aggressive, had stinging sensations, and his feet hurt so badly he couldn't walk. So we have to back off for now, and go more slowly. His major issues right now are bartonella and constant exposure to strep (DS6 is a carrier). It feels like 2 steps forward, 1 step backwards, but the tonsillectomy seemed like 20 steps forward. I think it has the potential in SOME cases to make a huge difference. We felt it was worth the risk in our case because DS was doing so badly - not attending school, debilitating germaphobia, verbal tics, mood disorder, etc. We were willing to try anything.

[momcap]

My DS8 is making AMAZING progress right now (OCD and germaphobia almost gone, verbal tics completely gone, able to attend school, etc). He started supplements for lyme at the beginning of July, then he had a tonsillectomy August 4th, and then switched to different and higher dose antibiotics for lyme the next week. So who knows which is what. I don't care. I'm just so excited to see him returning to health! He had a bad reaction to the anesthetic - ripped out his I.V. and was thrashing around inconsolable for an hour. I was really worried that it had triggered a bad exacerbation, but after the anesthetic wore off he settled and he did not have a PANDAS episode.

 

We added Bactrim to his lyme treatment last week, targeting bartonella. He got really agitated and aggressive, had stinging sensations, and his feet hurt so badly he couldn't walk. So we have to back off for now, and go more slowly. His major issues right now are bartonella and constant exposure to strep (DS6 is a carrier). It feels like 2 steps forward, 1 step backwards, but the tonsillectomy seemed like 20 steps forward. I think it has the potential in SOME cases to make a huge difference. We felt it was worth the risk in our case because DS was doing so badly - not attending school, debilitating germaphobia, verbal tics, mood disorder, etc. We were willing to try anything.

 

I always think of something else I should have said after I post... I should have also stated that DS had HUGE tonsils, swabs positive for strep regularly (and negative regularly too), and has ASOs in the 500s for the past 2 years, which started with scarlet fever. So there was plenty of evidence of strep in his tonsils.

[Kayanne]

Here's the second part to the article,

 

He lists cases that he has been involved with.

 

http://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment

[thereishope]

There is a lot of bacteria, other than strep that lurk in the tonsils, then when removed, perhaps that is all released. You are also exposing nerve endings, blood, etc..all is being exposed to that bacteria.

 

For those that have a worsening of symptoms post op, I have had the thought of whether all that released bacteria causes the problems but if in the long run, it still ends up being beneficial since hopefully, eventually that bacteria is fully erradicated. So, I would wonder if those that worsened after surgery, once they finally recovered from the horrible setback, how long was the child able to maintain that recovery? Obviously, this idea goes out the window for those that continue to have chronic strep post surgery.

 

I have been looking up any research about anesthesia and the BBB. When I look it up, I don't understand all the different kind of anesthesia. What kind of anesthesia do they use for t and a? Does anyone know of any research about that and the BBB?

 

 

Thanks everyone for the responses--interesting to read.

 

Could it be that the Tonsils and adenoids do something else, or "hold"-- or filter something other then strep???

 

-- In other words, if the tonsils act as filtering agents, could it be that their function is critical somehow, or gone awry in Ps kids?

This is total speculation:)

 

My girls have never had a "tested" strep. Though they get sore throats, and react otherwise as Ps.

 

IF T/A were possibly contributing agents, or malfunctioning in these kids???....

sigh.

[Kayanne]

T.Mom,

 

I wanted to answer your question. I had both of my girl's tonsils removed in Jun 2010. Only one is diagnosed as PANDAS. I pursued it on our PANDAS doctor's recommendation.

 

At our first appointment with the PANDAS doc, she told us that the tonsil removal was not a bad idea, but not something we should actively pursue. However, if she gets better and then has another episode, then you should seriously consider it.

 

My daughter's second episode started when my other 3 children were positive for strep, but she was on pen vk and kept testing negative, but PANDAS symptoms returned.

 

Our PANDAS doctor surmised that the strep could just be really deep in the tonsils where (a) the swab can't reach it, and ( b ) the penicillin is not effective in reaching it deep in the tonsil tissue. She also observed enlarged tonsils in my other daughter.

 

We lucked out and found a local ENT (who is a D.O.--I just think that is key) who didn't bat an eyelash when I said I wanted her tonsils out because of PANDAS. He was supportive of that course of action. I even asked him if it is enough reason to remove the sibling's tonsils to decrease strep exposure to her, and he thought so.

 

PANDAS daughter's tonsils looked small on exam, were small, normal and didn't culture positive for anything. She was out of her exacerbation for approx 3 mos when we had it done, and was on continuously full-strength omnicef. We dropped her omnicef to 1/2 dose prophylaxis about 6 weeks later.

 

Both girls had IV antibiotics during the procedure (thanks to DCMom's advice), and the ENT just told me to continue the Omnicef for PANDAS daughter, and prescribed Bactrim (I think) for a week for my other daughter.

 

Non-PANDAS daughter (has very, very mild emotional lability, and some panic issues) her tonsils and adenoids were enlarged and they cultured postive for Haemophilus influenzae.

 

It would appear that my decision to remove my PANDAS daughter's tonsils was overkill, but I don't regret it one bit. She has not had a PANDAS exacerbation after the surgery, she has had some strep exposure in school, but the most PANDAS symptoms we have seen return during last school year are so negligible...If I knew nothing about PANDAS, they wouldn't even raise a red flag for me.

 

My son has had strep 5 times (twice on the skin) and my other son twice. I was also told by our PANDAS doctor that if my son has one more infection, to pursue getting his removed too...he has had some minor behavior issues, bed wetting, and poor fine motor skills off and on for a long time--just not enough to pull the PANDAS trigger yet.

 

I am of the mindset that I will probably pursue getting my boy's tonsils removed if we hit any more rocky spots (more infection etc..). If we continue on the path we are on right now (all of my kids doing so well)...then I won't look into it.

Edited September 29, 2011 by Kayanne

[T_Mom]

Thanks again for the info. -- Karen, may I ask who your Ps doctor is? You can PM me if you like, I am curious -- and what is a DO? Thanks again--

Edited September 29, 2011 by T.Mom

[Kayanne]

Thanks again for the info. -- Karen, may I ask who your Ps doctor is? You can PM me if you like, I am curious -- and what is a DO? Thanks again--

Dr. L is our PANDAS doctor.

 

A D.O. is a Doctor of Osteopathic Medicine:

 

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

 

Instead of an M.D., they will have a D.O. after their title.

 

It was a D.O. who first brought up the idea of PANDAS to us...the very first time we brought up our concerns about my daughter. I have purposely, over the years sought out D.O.'s--they just seem to fit better with me. They spend a little more time learning about ways to keep healthy, and nutrition in their schools. When I was a teen, I worked with a girl going to the Phila. College of Osteopathic Medicine, so I learned about D.O.'s from her.

 

I've always been happy with the D.O.'s that I have seen.

[eljomom]

"the strep hides in crevices within the tonsils, where abx can't reach." I always wondered why, if the strep were "hiding" in the crevices where abx can't reach, how the culture would be positive? Does that make sense? Or....So if the strep is hiding in the tonsils, the child could still swab NEGATIVE, but still be reacting to hidden strep? I think this may be what angle our pandas doc was thinking, but not really sure. She drew a picture of a tonsil with strep walled off inside, and said how the abx can't reach it sometimes. My thought was if the abx can't reach it, then neither can the swab, thus the negative culture. But if abx not reaching it, then would it be capable of sending an immune message OUT as well?

 

The ENT we saw was going to remove tonsils solely on the rec of the pandas doc. Tonsils were +1 (small he said) and only 1 strep (known).

 

 

 

We see Dr. Murphy, and have a pretty PANDAS knowledgeable ENT. Both of their opinions is that T&A is not a "cure" for PANDAS, it may help in the cases of chronic exposure/exacerbation, but it does not change the underlying immune response to strep. Dr. M doesn't recommend it unless there is other reasons for it - she doesn't suggest it for PANDAS treatment alone, nor does our ENT (or our PANDAS pediatrician for that matter).

 

We saw our ENT last week (as my PANDAS son is now headed for T&A!) He explained it this way, in some folks (PANDAS or not), the strep hides in crevices within the tonsils, where abx can't reach. In normal kids, this manifests itself with multiple throat infections and ultimately T&A. In PANDAS kids, it results in motnhs, even years long episodes that wax and wane with the abx. (My son's case, we've gotten him back to 95% at times, but he's never been able to go longer than 6 weeks without full strength abx before a positive culture comes back again.) In these cases, long term abx have limited impact because they're not getting to the root of the problem (the infected tonsils). IVIG and other treatments may help, but if the infection isn't removed (T&A), relapses are likely.

 

In his opinion, the T&A is one step in the process, one piece of the puzzle. For our son, it may break our cycle of infection where we can see some long term improvement from the abx. If not - then we may still need to pursue IVIG, etc...

 

However, he said (as did Dr. Murphy), that the research is about 50/50 on T&A being the thing that solves the puzzle. Future episodes may still occur, they may be more minor (treatable with abx alone), but they could also be worse. They both say that there's just not been enough research done on the case.

 

If you take a straw poll around here, what he says sort of rings true, there are some folks who have had tremendous success with the T&A, and others where it sent them back into the bowels of hades.

 

I'm sure I've oversimplified what he said...but the gist is there.

 

(A note on our ENT - although he won't remove the tonsils for "just" PANDAS, he's very quick to remove them in PANDAS kids for any other reason - even sleep issues...I think he knows it's important, but doesn't want to give parents false hope - and run afoul of the insurance gods! )