Possible Pandas/High Strep Titres/Tics....tonsils angle?

[81lumberjack]

Our 10 yo son has possible PANDAS. He for sure has some pretty good tics and some OCD. Both his ASO and his Anti DNase b strep tires are very high and have been on successive measurements. ASO is over 4x reference range upper limit.

 

Given past years of repeated strep and some funky enlarged, asymetrical tonsils, 2 docs have advocated removing the tonsils. We're leaning toward doing that for several reasons. Some of our thinking relates to hoping that removing the tonsils will help get the ASO (strep) titres down. We're also on the Autism spectrum, so we're very reluctant as are our docs to do the intense antibiotics. Plus it's probably been awhile since he's had an active case of strep.

 

I know Swedo, et al don't think tonsils impact true PANDAS, but assuming we either do or don't have real PANDAS, but for sure have greatly elevated strep titres, tics/ OCD, etc... anyone have an opinion on the impact of removing the tonsils on any of this. Would you expect the titres to lower after a tonsillectomy?

 

There are limited references in PubMed of tonsillectomies helping to relieve tics/OCD, with some vague references to PANDAS, but not many.

[ad_ccl]

My son has PANDAS - he had chronic ear infections from 6 months to 2 years - and enlarged tonsils (touching). They did ENT surgery at 2 , tonsils and adenoids out and ear tubes in. He was diagnosed with PANDAS at 6 - very high titers - with no tonsils. Just our experience.

[optimistic3]

TONSILS & TICS

 

We have been researching since the onset of tics in our son for over a year. I too have spoken with Swedo and it appears there has been no study or survey on the removal of tonsils and/or adnoids correlating to a reduction of tics.

BUT, just last week we were at an ENT specialist for the first time because our child has been getting a rocking feeling when he lays down. This is a new symptom and we are unsure whether it is related to the tics/strep/PANDA issues.

 

Our ENT specialist, saw the facial tics immediately and we got into a discussion. He said he had a child of same age group (8-10) who had recurrent boughts with strep. The child also had tics including facial tics. Due to the strep and not due to the tics, he advised for removal of tonsils/adnoids.

After surgery, the tics completely dissapated and NEVER returned. He did not know of the PANDAS study until we spoke of it.

 

He did say that removal will most certainly reduce cases of strep but the child can still get strep, however it will be less often than it currently is. He also said the tonsils are the number ONE place for the strep bacteria to linger in and he believes that the antibiotics have difficulty penetrating inside and clearing the tonsils. We researched this- it is true.

 

No one has ever mentioned having the tonsils removed before. Our ENT MD is getting permission for us to speak to the parents of his former patient and hopefully we can get a case history and see if there are similiarities with our child.

 

We did find another case, a parent whose child had severe tics and then tonsils were removed about two years after onset. That child in now in his teens and tic free.

 

We have a friend in Europe who child is autistic. The mother is a strep carrier, but had her tonsils taken out years ago. She was on antibiotics during the pregnancy. She too is now looking into the tonsil-strep connection.

 

We are still researching and have not decided whether our child needs the surgery. The Md's are split on this issue. The difficulty here is that our child doesn't present the usual strep symptoms i.e. a sore throat. He gets a stiff neck and aching then several days later he will test positive for strep.

 

We truly believe there is a pattern with strep and tics. Also most parents we have spoken to, we have gone to the Tourette Association meetings, and the majority of all see the increase in tics with strep.

 

This is my first post and we have remained quiet because we have not found solid information to post. In our family we have persons in medical and pharmacological field. We have done a tremendous amount of research over this past year. We have seen top-many MDs and alternative practitioners in NYC and surrounding areas.

 

For the first time, the tonsil issue may be something for us all.

 

Neither my wife or I have had them removed.

 

MDs are mixed on how many bouts of strep are required to consider the surgery. I think many children fall into a quandry here because the titers may remain elevated and the strep may still be present inside the tonsils only to repeatedly resurface.

 

 

I PLEASE invite anyone to post their info and whether they or their child had tonsils removed and any correlation with tic reduction, etc.

 

Thank you.

[optimistic3]

81 Lumberjack, Apology for not directly answering your question. I believe the answer is yes, the removal of tonsils will lower the titers eventually, provided there are less bouts of strep infection. That is the rational of long term antibiotic therapy, which we are not in favor of. But we know and have met many persons and MD's who advise of long term and a few cases of permanent treatment with antibiotics, and the results have been very positive.

Theory being if no infection, then the body will not over stimulate-produce the antibodies, the titers will not rise.

Hopefully you get more replies/posts.

[faith]

Optomistic,

forgive me but you don't mention if your son has had the tests for the strep antibodies and titers? If so, what were the results? May I ask your child's history of symptoms? Are you still researching the course of action for your child or have you started antibiotic therapy? Sorry for the questions, I am just wondering if you have had success or are still searching for answers.

 

Thanks

Faith

[optimistic3]

FAITH, Thank you for writing.

 

Here it is: Otherwise normal healthy 8 year old boy. Occasional strep, nothing above average until, starting in Dec 05 he had three bouts of strep. By Feb 06 he had three rounds of antibiotics. No tics until end of August 06. Sudden onset, both oral and motor. The week prior he did have shoulder-neck pain. We have learned that the shoulder-neck pain is usually a pre-symptom for a strep infection for him.

 

Tested negative for strep at that time by rapid test and culture, but when blood work done at our request, weeks later the DNase showed his titers I believe were 600. Not extremely high, but high enough. then did antibiotics started. Our own research found out about PANDAS etc..

 

It seems he responded better to ceflixin as opposed to augmentin. Two differing families of antibiotics.

 

Since then there has been waxing and waning of his tics. At the onset they were constant and involved all extremities. then they lessoned after about a month. We have learned that any artificial food coloring, high fructose syrup and certain chemical food additives increase in tics. Since my wife has allergies, our home was already very clean, but we went further. He has an IQ Air filter and we removed the small throw rug. Only carpet we have is in the basement which is never used. Also everyone got Tempurpedic beds because dust mites can not live in them. He gets, and we all do now, fish oil, we use Carlson Brand and probiotics. Installed chlorine shower filters. Also eliminated flouride toothpaste. In summer we limited any swimming pool (chlorine issues).

 

He also has difficulty with dairy products. If he has any, then his belly will reflux. So we avoid these as well. He does take the lactaid enzyme if he has dairy and it does help him. We alos buy lactaid milk and ice cream.

 

He has never been OCD, ADD, AHDD, that we know of. Physicians have advised there is nothing to do but ride it out. He is extremely bright boy and is sensitive emotionally.

 

Other possible factors--he did have the MMR vaccine years back as did his sibling. We have not done chelation therapy. All his bloods, including testing for metals, etc were fine. There were many blood tests run. Nothing pertinent was found other than the DNase positive.

 

We do not know of tic/tourette/autism issues on my or my wife's side of family.

 

Years back I lost a parent to cancer. From that experience I learned a great deal on nutrition. Out of all the areas I studied, one diet: "Macrobiotic" was very interesting. I went to a weekend conference in 1990 and learned a great deal. What I thought was going to be weekend with health professionals and athletic individuals, ended up being a weekend with about two hundred terminally ill persons who most believed they were alive due to this diet. the famous Dr. Spock who wrote the bestselling Baby book was there because he was ill and believed in this diet. He also advised to be careful of the dairy intake, especially non organic.

 

Point being, we also try to eat as healthy as we can. In macrobiotics you get to lactobillis and "good" bacteria that our antibiotic medications wipe out. You also get a dailiy dose of iodine and minerals from the seaweeds.

 

We do not follow a macrobiotic diet, but we do give probiotics and we try to have certain foods with the trace minerals. We drink filtered water. We use enviromentally friendly cleaners, soap, shampoo etc.

 

We have also thought of outside enviromental triggers. We have taken a few trips to different geographic areas in hopes there may be a change. Nothing noticeable occurred.

 

Throughout this all, we have kept things as normal as possible. Most of the time it was either my wife or I who saw consulted directly with physicians. We were very selective and researched before we brought our son in for any examination.

He is other wise a healthy happy boy who likes sports and having fun. We speak openly with him and he feels very loved by us all.

 

We have not given supplements like magnesium or zinc. We have just tried our best to eat healthy as possible.

 

To date we do not feel we have found any one decisive factor in helping our child. We always thought if we could eliminate strep issues, then at least his symptoms would hopefuly be minimal, or maybe dissapate.

So this tonsil-adenoid issue is a new item for us to think about. I am trying to reach out to as many persons as possible to see maybe there is a pattern or other info in this area?

 

Thanks for reading.

[kim]

Welcome Lumberjack and Optimistic,

 

Lumberjack, my oldest son now almost 15, had his tonsils out after repeated strep and ear infections. His tics were worse after removal, but I can't say that he fit the classic PANDAS profile thouogh either. Not what I would describe as "explosive onset."

 

My youngest son also had many strep infections, was said to be a carrier, but his tonsils were not removed. Ped said they weren't enlarged enough, where my oldest sons were. I would have to guess that he had elevated titiers, due to the repeated positive cultures, with no symptoms., but titers were never tested.

 

I do believe that my oldest son had less strep infections after his tonsils were removed.

[Dedee]

I can only respond quickly. My son who has PANDAS has done much better after finally having his tonsils removed at age 11. He has been diagnosed with PANDAS since 5. His OCD has been an issue since age 5, but the tics did not show up until he began having recurrent strep infections around age 10 and 11. That is when we decided to have them out. He has also been on antibiotic therapy since that time as well. So it may be difficult to say which has helped the most. I personally think it is a good thing. Just my two cents. We didn't have pre titers to compare to but my sons titers are still waaaay elevated. Who knows what they were before. Good luck on your decision.

 

Dedee

[kim]

Lumberjack,

 

I edited above post, it didn't belong on your thread, I'm sorry.

 

I wanted to ask Dedee and others what they used to manage pain after tonsil removal. As I mentioned in the other post, We were given tylenol with codeine, and told to alternate with motrin. My son did have a very sore throat (which I was not expecting) for quite some time after the surgery.

 

I have since learned that tylenol is probably not what you want to be giving kids especially long term, as it's said to lower glutathione, which may be low in our kids to begin with.

 

If you decide to go ahead with removal, maybe you could ask on this forum, if there are any supplements that would be a good idea to boolster your son prior to the surgery. http://neurotalk.psychcentral.com/forumdisplay.php?f=49

 

Pain management and getting my son healthier before having his tonsils removed, are two things I wish I would have given more thought to.

 

Dedee, how long has it been since your sons tonsils were taken out, to his last titers test?

[81lumberjack]

Thanks everyone for the specific feedback on the original question as to whether tonsillectomies can serve as helpful treatment for tic/ocd type stuff. Thanks for the good post Kim on being prepared for pain management and overall health prior to a procedure like a tonsillectomy. Please keep the posts of your personal experiences/knowledge coming........it is very helpful.

 

We have not seen Dr Murphy at Shire that so many of you have written about, I wonder if she would have an informed opinion on tonsils and their connection with OCD/Tics/PANDAS?

 

There are about 3-4 articles on PubMed similar to the one I have posted below, including one from the Mayo clinic, that are interesting, but I've not seen any real "studies" yet. Apparently the NIMH and Dr Swedo have not really investigated this possibility, other than opining that they do not see the therapeutic value in true PANDAS cases.

 

 

 

Heubi C, Shott SR.

PANDAS: pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections--an uncommon, but important indication for tonsillectomy.

Int J Pediatr Otorhinolaryngol. 2003 Aug;67(8):837-40.

"Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, also know as "PANDAS," is well described in the neurologic and psychiatric literature. PANDAS is associated with obsessive compulsive disorders (OCD) and tic disorders. The streptococcal infections may trigger an autoimmune reaction that exacerbates these conditions. Recurrent streptococcal tonsillitis is one of the recurrent infections associated with PANDAS. This paper reviews the case reports of two brothers, one with OCD and the other with a tic disorder, both of whom improved significantly after undergoing adenotonsillectomy for treatment of their recurrent tonsillitis. A review of the pathophysiology and current understanding of PANDAS is presented." [Abstract]

[momX4]

So to be diagnosed with PANDAS does your child have to have both OCD and Tics?

 

My child has a motor tic that comes and goes. It has been gone for as long as 6 months before. It gets much worse with an active case of strep throat. After treating him with amox. he is now 95% better. Tonsils are gone due to constant strep throat they were removed almost two years ago. He still gets strep throat but not as much and not nearly as bad. I have noticed when he is under stress he will tic but usually that is following strep throat. I can't remember what came first the tic or strep throat but i know the onset of it was nearly the same time. He is almost 8 years old, growing like a week......no OCD, No ADHD, just a very sensitive/nervous child but is doing great in 2nd grade and is quite the soccer athlete.

 

I haven't been on here in a long time cause well we have been tic free for a very long time until about two weeks ago when he came down with strep throat (HERE WE GO AGAIN!).

 

Looking forward to finding out more info to help me figure out what the next step is!.

 

ps. he had his titers checked one time a long time ago and they were very low but i think this was after his tonsils were removed. do you have to have high titers to have PANDAS or if your child meets most of the criteria is that enough of a diagnosis for PANDAS?

 

 

 

 

Thanks everyone for the specific feedback on the original question as to whether tonsillectomies can serve as helpful treatment for tic/ocd type stuff. Thanks for the good post Kim on being prepared for pain management and overall health prior to a procedure like a tonsillectomy. Please keep the posts of your personal experiences/knowledge coming........it is very helpful.

 

We have not seen Dr Murphy at Shire that so many of you have written about, I wonder if she would have an informed opinion on tonsils and their connection with OCD/Tics/PANDAS?

 

There are about 3-4 articles on PubMed similar to the one I have posted below, including one from the Mayo clinic, that are interesting, but I've not seen any real "studies" yet. Apparently the NIMH and Dr Swedo have not really investigated this possibility, other than opining that they do not see the therapeutic value in true PANDAS cases.

 

 

 

Heubi C, Shott SR.

PANDAS: pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections--an uncommon, but important indication for tonsillectomy.

Int J Pediatr Otorhinolaryngol. 2003 Aug;67(8):837-40.

"Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, also know as "PANDAS," is well described in the neurologic and psychiatric literature. PANDAS is associated with obsessive compulsive disorders (OCD) and tic disorders. The streptococcal infections may trigger an autoimmune reaction that exacerbates these conditions. Recurrent streptococcal tonsillitis is one of the recurrent infections associated with PANDAS. This paper reviews the case reports of two brothers, one with OCD and the other with a tic disorder, both of whom improved significantly after undergoing adenotonsillectomy for treatment of their recurrent tonsillitis. A review of the pathophysiology and current understanding of PANDAS is presented." [Abstract]

[Chemar]

hi

 

as far as I know, there does not HAVE to be OCD for PANDAS dx.......or even tics for that matter......... it is the elevated strep antibody titres plus a range of other markers I think, with OCD and tics being amongst the most common

[michele]

Have there been cases where after repeat exposure to strep titers elevated and PANDAS episodes where the symptoms like OCD and tics, ADHD came out following an illness and stayed and devloped into Tourettes, OCD permanently? They call PANDAS an Autistic spectrum disorder does this mean it gets more like autism with repeat episodes? Does autism ever heal itself and get better? What do you all think about this Jenny McCarthy autism story with her son's improvements with GFCF diet and supplements. Does she ever say exactly the supplements they use? I know she says alternative meds. I'd love to know.

M

 

 

hi

 

as far as I know, there does not HAVE to be OCD for PANDAS dx.......or even tics for that matter......... it is the elevated strep antibody titres plus a range of other markers I think, with OCD and tics being amongst the most common

[bmom]

I have not read her book, but I read the People magazine article which I found very interesting and also similiar since I have taken my son to UCLA tics and Tourettes and turned to alternatives as well. She also discusses how she is constantly on the computer which we are all probably familiar with. Anyway, she discusses the GFCF diet that seemed to bring success. It said she took away yeast, wheat, sugar, and dairy and an anti yeast treatment that brought great improvement. She did not mention supplements. She said a doctor prescribed anti yeast- possibly Nystatin? I found the article to be a good one and I might try to buy the book to see if she discusses supplements in it. She said her son has some OCD compulsions that lessoned with the anti yeast. It did not say in the article if he had any Tourettes behaviors, but in the end said he will repeat words sometimes. It also discussed his stimming behavior of flapping his arms.

[optimistic3]

Hello all. I want to give an update and also post some new info. Figured I would put it in this forum first instead of a posting a new topic.

 

First, a side issue: Aside from the earlier post which focused on the tonsil issue, my son has had a "rocking" feeling when laying down especially at bedtime. This started first about two months ago. First periodically, then consistently. Checked out fine at MD's, but in August he had the neck pain and a few days later tested positive for strep. Put on antibiotics, tics lessoned eventually but rocking feeling remained. Saw the ENT specialist, see my prior post and the "tonsil" issue arose.

ENT put him on meclizine (like dramamine a motion sickness med), half pill at night. This worked perfectly, but rocking comes back if he does not take pill.

Pediatrician wants MRI of head-ears canal with contrast. ENT advises against it.

 

We figured the rocking could be a tic, but it is a unique one that has stayed consistently.

 

Any thoughts?

__________________

 

NEW INFO: I received a few direct posts & did some research.

 

there is a forum at Yahoo that discusses PANDAS etc:

 

http://health.groups.yahoo.com/group/PANDAS_Support/

 

I looked and found this post:

 

 

Re: New treatments from the NIH for Pandas

 

"Interesting to see that NIH is now studying riluzole, a glutamate modulating agent--notonly for PANDAS/OCD but also for autism.

 

I have posted prevously that namenda---also a glutamate antagonist---has worked wellfor my son---both for his severe OCD (likely PANDAS induced) as well as underlyingaspergers/autistic elements (improved socialization). No negative side effects

withNamenda---; a study is coming out soon where they used it on 150 autistic kids withvery positive results.

 

N-Acetyl-cysteine is also a supplement that apparently can be beneficial---byincreasingexpression of glutamate transport proteins in the brain----that helps decrease extracellular glutamate---which is toxic. Common lactam antibiotics also promote theexpression of these transport proteins--and are likely beneficial.

 

The bottom line--it is looking more and more like excess glutamate is the problem thatcan cause OCD as well as autistic spectrum disorders."

________________________________________

 

Llactam antiobiotics (which is a broad range of meds-penicillins, cephalosporins etc..) work well with PANDAS along with Riluzole, and these meds also affect glutamate levels with beneficial results, has anyone more info on this & glutamate issues?

 

 

THANK YOU.