Serendip is an independent site partnering with faculty at multiple colleges and universities around the world. Happy exploring!

PANDAS: A link between strep throat and OCD

SerendipUpdate's picture

Biology 202
2003 First Web Paper
On Serendip

PANDAS: A link between strep throat and OCD

Cordelia Stearns

Can an ordinary streptococcal infection (strep throat) lead to obsessive-compulsive disorder (OCD)? In a small subgroup of children, a seemingly normal bacterial strep infection can turn into a severe neuropsychiatric disorder. The disorder affecting this group is known as PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections), and was identified by Dr. Susan Swedo just twelve years ago (1). Though research on PANDAS is still very much a work in progress, it has already generated excitement that this disorder may lead to answers about the cause and nature of OCD (2). Similarities and differences between PANDAS patients and the majority of OCD patients, experimental treatments for PANDAS infections, and comorbidity of PANDAS with a variety of other psychiatric and neurological disorders are slowly leading to an understanding of exactly what OCD does to the brain (3).

It is not the streptococci themselves that cause OCD symptoms. Rather, strep infections seem to cause the body's immune system to build up antibodies that, for an unknown reason, begin to attack the basal ganglia in rare cases (1). The link between streptococcal infections and neurological disorders has been known about for half of a century. Rheumatic fever was identified in the 1950s as being an autoimmune disorder correlated with strep; Sydenham chorea, a disorder of the central nervous system involving hyperactivity, loss of motor control, and occasionally psychosis, was recognized as another strep-linked disorder that could be a symptom of Rheumatic fever or could stand on its own. PANDAS seems to be a milder form of Sydenham chorea (4).

Dr. Swedo observed, tested, and interviewed fifty children with a sudden onset of OCD or tic disorders who had recently (within the past several months) been diagnosed with a group A beta-hemolytic streptococcal (GABHS) infection. These children tested negative for Sydenham chorea. Swedo discovered that the children had episodic patterns of OCD and tic symptoms. She tested the presence of antistreptococcal antibodies in their blood and found that symptom exacerbations were twice as likely to occur with the presence of antistreptococcal antibodies (1). Brain imaging studies found that the caudate nucleus, frequently linked with OCD, became inflamed in PANDAS patients when antibody presence was high (2).

OCD symptoms are generally very similar between children with PANDAS and other OCD patients (5). However, the onset of symptoms can be quite different. While OCD is usually first identified in adolescence, PANDAS patients are always prepubescent. This is likely to be because of the rarity of GABHS infections in teens and adults. Also, though OCD usually manifests itself gradually, in PANDAS patients it can set in overnight. Swedo and colleagues report frequently seeing children whose parents could recall the day their child became obsessive-compulsive (2). Though it is not known why, PANDAS patients overwhelmingly obsess about urination, which is not an especially dominant obsession in other OCD cases (5). The episodic pattern of symptoms is unique to PANDAS patients. While other OCD patients can go through periods where symptoms are slightly more or less exacerbated, PANDAS patients often experience complete disappearance of symptoms between episodes (1). It is unknown whether a genetic marker on B cells of the immune system known as D8/17 is specific to PANDAS patients, or common in all OCD patients (6). The structure and function of this marker is currently being identified, and may provide some clues about the heredity of PANDAS or OCD in general (2).

Thus far, studies in which penicillin was given to PANDAS infected children as a preventative measure against strep and OCD have been inconclusive (3). However, many PANDAS patients have shown significant reduction of OCD symptoms when given plasmaphoresis, a type of plasma transfusion, to remove the antibodies (2). Current studies are further investigating prophylactic antibiotics, plasma exchange, and steroids as possible treatments to go along with SSRIs in treating both PANDAS and ordinary OCD.

As in most cases of OCD, other neuropsychiatric disorders are often present in PANDAS patients. Swedo and colleagues found that 40% of PANDAS patients suffered from ADHD, 42% from affective disorders, and 32% from anxiety disorders (1). There are several points of interest in discussing the comorbidity of these illnesses with PANDAS. It was found that non-OCD psychiatric symptoms in most cases followed the same cycles as OCD symptoms, and set in suddenly when antibody levels were high (1). This brings up the question of whether any additional psychiatric disorders can be triggered by strep throat or other bacterial infections. Though there is no evidence to date linking post-strep autoimmune dysfunction with any illnesses other than tic disorders, OCD, and possibly late-onset ADHD, researchers are looking into possible ties with disorders like autism, anorexia, and depression (2). The comorbidity statistics also suggest that particular areas of the brain which we know are involved in other psychiatric disorders are attacked by the post-strep antibodies, and could help lead to identifying the exact cells or proteins that are targeted. Interestingly, the putamen and globus pallidus, neighbors of the caudate nucleus, are linked to tic disorders and hyperactivity (2). This could explain the frequency of occurrence of these symptoms alongside OCD in PANDAS.

The frequency of PANDAS in the general population is unknown, but it is definitely a rare disorder. By contrast, OCD is present in one to two percent of the population (7). This may make PANDAS research appear useless in relation to research on "normal" OCD. On the contrary, the small size of the subgroup of PANDAS sufferers and the link to a disease as widely studied as strep throat could provide the key to discovering the cause of OCD and identifying exactly what genes and brain structures are involved (2). For example, if the nature of the antibody attack on the basal ganglia in PANDAS were identified, researchers could possibly target similar degradation in the basal ganglia of other OCD patients and potentially begin to look at ways to prevent this degradation. Also, research and public knowledge about PANDAS might make more people aware of the medical aspects and biological causes of mental illnesses. Perhaps this would lessen societal discrimination against the mentally ill and lead more people to understand why pharmaceuticals are often helpful or necessary in treating mental illnesses (7).

There is strong evidence of a link between streptococcal infections and obsessive-compulsive disorder in some children. Though it is not known exactly how the immune system turns against itself and causes behavioral symptoms, there is hope within the scientific community that answering questions about PANDAS will in turn lead to answers about OCD and mental illness in general. This disorder provides evidence for medical models of psychiatric illnesses, and for the idea that the brain = behavior. It is amazing and frightening that an illness that seems like a mere nuisance can lead to a severe behavioral change almost overnight. However, research and possible treatments appear promising, and this tiny disorder may contribute more to the body of neuropsychiatric knowledge than any other illness in the past.



1) American Journal of Psychiatry Website, First Susan Swedo article about PANDAS, defines symptoms and criteria

2) The Scientist Website , Harvey Black article discussing research and several points of view on PANDAS

3) Science Direct Website , Pilot study on use of prophylactic penicillin in treating PANDAS

4) Medscape Website, Register for Medscape, then go to Richard Barthel article "Pandas in Children - Current Approaches", overview of knowledge on PANDAS

5) JAMA Website , Joan Stephenson article discussing antibiotic treatment

6) Psychiatric News Website , Article discussing biological marker associated with OCD

7) University of Florida News , Current research being done on PANDAS and OCD



Continuing conversation
(to contribute your own observations/thoughts, post a comment below)

01/18/2006, from a Reader on the Web


Additional comments made prior to 2007
I found all this very interesting. I am 24 years old, and at the age of 17 I was labled with OCD. As a child I had Strep Throat all the time. I would get at least twice a year. Often it was so awful I would end up in the hospital. When I came across this study, I was amazed! ... Melissia Eachus, 22 April 2006



My daughter Sacha, aged 6, developed OCD related symptons around the age of 4, two weeks after a strep throat infection. The symptons were brief and melted away over a period of 4 weeks. She had a second strep throat approx. 3 months ago which, unfortunately, was not attended to quickly enough, developing a rash over her body. No evidence of Scarlet Fever. Check for Rheumatic Fever was requested as she complained of sore knees, (negative). Since then she had three more suspected strep throats back to back (no cultures taken). She now has suddenly developed severe symptons of Tourettes. Awaiting diagnosis from specialists ... Belinda Allen, 26 July 2006



My son's doctor just told me about this correlation between strep and OCD today. We have started on an antibiotic to see if it relieves some of the symptoms. This was a great, easy to understand article. Thank you ... Robin Maupin, 25 October 2006



I read your article on PANDAS, after researching OCD. I was researching OCD because I beleive I have OCD. Even though I have not been clinically diagnosed, I am 100% sure i do. I have every symptom that is listed. Anyway, I had read a small paragraph that strep throat at a young age could lead to OCD. I was repeatedly infected with strep throat, when I was younger. Almost every year consecutively for a long time. This all seems to make sense now. I beleive that I got OCD from strep throat. One reason is because of getting strep throat every year, and now I [know] I have OCD. But another is because since I was younger I would have different episodes of having to say something over and over again, to feel right. And this wasnt present until I was say, 8-10 years of age. And everytime, I would have an episode, then be free of symptoms for a stretch of time, and feel normal. Then something else would takeover. Now I need this constant reassurance on one paticular issue. The funny thing is, is that I was free of symptoms for 6 months, and it has resurfaced in the past 3. There has been speculation that many people with OCD are unaccounted for clinically, I believe this to be true with PANDAS as well. While it is rare that the brain would have an autoimmune response because of this infection, I dont think it is too unlikely, especially after repeated exposure. Most people with OCD keep it to them themselves. And I think its because they know its obsurd, their actions and thoughts I mean. But they just cant help it. To feel right, they must have this reassurance with things. To constantly go over something, no matter how many other times they have thought about it, and have settled it in their mind. And even though people with OCD know that what they are feeling is because of a disorder, it doesnt matter. It doesnt help. Right now I take 5 htp supplements, I have read many studies that these help OCD and other related mental illnesses, by increasing the amount of serotonin. Also psilocybin has been succesfully used to treat OCD, which also by a twist of fate has to do with serotonin, specifically 5ht b and c, I beleive [could be wrong]. Anyway, thank you for your time. Your articles are greatly appreciated ... Conor, 11 April 2007



I am interested in learning more about P.A.N.D.A.S. (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections; specifically, whether there are any reports of this syndrome progressing into adulthood, as well as any current treatment recommendations and any specific bio markers. As far as I understand, the link is made presumptively based on history combined with the presence of immunologic markers for strep (which are very common). My questions are: Are you aware of any tests that are highly specific for PANDAS and if so, what are they? Are you aware of any reporta of adult cases (unreckognized in childhood, but diagnosed in adulthood as ongoing/chronic PANDAS)? What are the current treatment recommendations for this condition in adults? Thank you very much for any help that you are able to offer ... Bryan Conkling, 15 November 2007



My 17 year old son seemed to develop OCD out of the blue and it is now progressed very rapidly. He is currently awaiting bloodwork and evaluation for PANDAS. This paper was very helpful and informative. Thank you ... Lisa, 29 November 2007


Lori's picture

Doctor in Kentucky

Hi Kim-
I am having difficulty finding your comment on the site. For some reason I cannot find your post. I am commenting on the link provided, hoping
this will post under your question. Actually, I'm not even certain you are directing this question to me, as I am not from the Kentucky area.
I do not know any doctors in your area, but if you google P.A.N.D.A.S. Network, you can find a provider through their website. If you have any questions for me, please feel free to write, and I will respond (hopefully you will see this post). Good luck Kim!

Serendip Visitor's picture

I have to wonder now if this is my issue

HI. I am very self educated on the immune system and depression, cancer, thyroid, hasimotos and the gamut of autoimmune disorders but OCD to the max with anxiety and spending and other complusions including irritability depression and vicious thoughts which then swing to emotion of "why can't I just be normal." My brother was a strep 'carrier' and in fact he had Rheumactic fever and I had strep now at least 30 times. The issue as a child of being changed from left to right handed I do not think helped and I DO recall always worrying about how to "pee." This article I just found (having a bad day) makes me wonder if all these years it is OCD which has lead to all else and furthermore PANDAS being untreated just making me feel more and more abnormal. I try not to go out, if I do I know I'll spend or get in trouble some way and if I stay home I obsess about a dozen other things - such as this week overspending to the point I am not sure my bills will be paid.
I have no joy, I do nothing that even gave me joy as the "why bother" kicks in. always.
People hate me most friends I've lost and the true blue ones worry about me constantly. .So I am a pain in everyone's neck.

This all a vicious cycle for me I desperately try to also break - as a cycle. NOT successful.
One wonders what could help.

I am glad I found the information but given the small amount known the newness of discovery and I am sure the medical community has a "poo-poo" factor on this (well its new so we don't really believe it..that thing they do) I am not sure I could find a suitable means of assistance.
However perhaps I am not crazy having read this and appreciate that and your research.
best to you.

Serendip Visitor's picture

Have you researched Bi-polar?

Have you researched Bi-polar? My husband was diagnosed with Bi-polar II he mostly suffers from cyclothymic Bi-polar, but his symptoms are a lot like yours. My son has PANDAS and we discovered my husbands diagnosis while researching my son's symptoms. There are a lot of similar symptoms and I wouldn't doubt if some day they are able to link most disorders like bi-polar to something like PANDAS during childhood. My son had PANDAS for a year before he was diagnosed so the inflammation did some damage. He is much better than he was, however it has been 8 years since his diagnosis and due to the long term inflammation he has some lingering side effects like difficulty writing, math, and some sensory issues. He has been on a profolactic antibiotic for 8 years and currently that is the only way to keep his symptoms stable. I hope that helps you. My husband is medicated with a mood stabilizer and anti depressant and has been for 7 years it took us awhile to find the right meds but he is doing MUCH better now. No spending sprees, much less anxiety, less agitation, still some dark days but not as long lasting and not as depressing as before his medication.

Serendip Visitor's picture


My son is 12 and was diagnosed several years ago with anxiety and ADHD. He has always been a "worry wart" and tends to worry about things more than most kids. However, in the past week, he has had an onset of OCD behaviors. He will share with me that he has thoughts of guns, violence, swearing, stealing, sexual thoughts, and things that are completely out of character for him. After each thought, I will hear him mumble a prayer. This is repeated several times, at times, within a brief period of time. He has also developed a couple of vocal tics which come and go. We are seeing the ped tomorrow for first steps as our son is becoming very distressed over the thoughts and it is starting to affect his ability to concentrate on work and life in general. Anyone have familiar stories? Any incidences related to PANDAS?

Serendip Visitor's picture

My son has PANDAS

Your son sounds like it is exactly like PANDAS. My son has and still is dealing with it. The symptoms minus the tics describes what my son went through. Take him to the doctor. Demand (nicely) that he get blood tested for strep. If they won't do it keep looking for someone who will. I can't stress on how important it is to find a doctor who will work with you. Once you get the results back, if they are high look for someone who will treat PANDAS in your area. Good luck and it really helps when you find the right doc to help you and him!!

Lori's picture

Linked to PANDAS

Hi- my son, who is 15 years old, has been going through similar events. I've been writing on this blog for some time now, and I have taken my son to see a PANDAS specialist. I've learned from past mistakes, that most pediatricians don't have a clue as how to treat PANDAS; nor do they believe that it even exists. Unless your pediatrician is well versed, or even the slightest bit aware of PANDAS onset symptoms, don't waste your time. Go and see a PANDAS specialist. My son began with tics first, when he was 10 years old. I brought him to a neurologist, and he was convinced that my son was experiencing Tourette's Syndrome. I was told to not bring attention to it, and that it will get better once he goes through puberty. As time went on, my son's tics grew worse. I began researching more on the Internet, which brought me to PANDAS symptoms. Long story short, we went back to the neurologist, he practically laughed at my findings of PANDAS, and told me not to worry; that my son will be just fine; his words, "He simply has Tourette's". As his tics increased, he began developing OCD, worrisome thoughts, just like your son. He couldn't watch the news, because he was worried that he could become one of these "bad people" he sees on the news. It was affecting his daily routine, sleeping, and he would cry over having these thoughts. His OCD got worse at the same time. This is when I took him to see a PANDAS specialist in CT. He answered all of my questions, and told my son that he does not have Tourette's. What he was experiencing was an autoimmune response to a trigger (strep, infection, virus, etc), which caused the onset of his tics, OCD and worrisome thoughts. He ran a whole series of blood tests which revealed many clues. He tested positive for Lyme's Disease, lacked enough antibodies to fight off strep, and other viruses that he had in the past. He began treating him with antibiotics, and within two-three weeks later, his tics began to go away. Unfortunately, he was unable to continue antibiotic treatment, because he had developed c-diff colitis years ago. This was two years ago. He has since then, gotten worse with the OCD, and his tics remain the same. If your son can be seen by a PANDAS specialist, this would be the best route for him and yourself. If your pediatrician is willing to listen to you about PANDAS, then most definitely start there. Maybe he/she can give you a referral to a PANDAS specialist. I know of two very good doctors who specialize in PANDAS. Not sure what state you live in, but they are located in CT and NJ. Good Luck!!

Serendip Visitor's picture


If you could please give me that PANDAS Doctor's name/# in NJ I would really appreciate it.
Thanks so much,

Lori's picture

Doctor in NJ

Hi Donna,
The doctor in NJ is Dr. Rosario Trifiletti (Ramsey, NJ).
There's also a doctor in CT, Dr. Dennis Bouboulis.
Good Luck....Lori

Caryl's picture


I am 57 years old, suffered Strep throat several times yearly as a child, developed OCD and separation anxiety that went untreated. As an adult, I have had OCD and separation anxiety continually, depression/anxiety issues and PTSD that I finally had diagnosed and have been being treated for off and on for the past 36 year...and a compromised immune system and all that goes with it. My daughter has OCD/anxiety issues and now my 11 year old Granddaughter is having real problems with OCD, ADHD, severe anxiety, separation anxiety, anger, had a real issue with urinating at age 5 and has trouble leaving the house. I talked my daughter into "forcing" the doctor ( who didn't think it was necessary) to do a blood work up as the meds she was getting for depression/anxiety were just not working. After he finally did, he called my daughter and mentioned the possibilty of PANDAS, which he didn't know much about, but would investigate. We are both doing our homework and I just came across this site. I am wondering if it is genetic...maybe I had/have it and passed it on? And more importantly...will my Granddaughter be able to have a normal happy life, unlike mine? I worry so much about her as she is so there someone in Washington state that anyone can recommend? Any books to get, articles to read....any hope? Any help would be appreciated. Thank you.

Lollymom's picture

Doctor in WA state

You may have already found a good PANDAS doc but if not I will pass along a name. Dr. Cynthia Keller at Redmond Pediatrics is wonderful and has many PANDAS patients. Highly recommend her. She may be difficult to get into. Wish the best for all of you.

Serendip Visitor's picture

Washington state doctors

I just called her yesterday and learned she is no longer taking new patients. Anyone else have a legitimate PANDAS doctor in the northwest? We've been searching for 3 years now to find help for our now 11 year-old son. Thank you.

Lolymom's picture

PANDAS Doctor in WA

Did you contact Dr Keller at her new practice? She started a new practice that is called 'Centered in Wellness'. She is no longer at Redmond Pediatrics. If she is still not taking new patients, then I would ask if she could recommend a local doctor who also treats PANDAS. I actually live in Oregon and don't know many docs in Washington. I suspect she would pass along a name if she knows one. She is a great doctor. Will pray for you and your son and would be happy to talk on the phone or email if I could figure out how to not let the world know either.
Best to you,

LAMP's picture


I have an 8 year old (healthy otherwise) daughter.
She started obsessing and acting distressed about this time last year. It happened out of the blue. After many phone calls to local therapists for anxiety and OCD, and many tears from both my daughter and myself we ended up at a therapist's office that specializes in pediatric anxiety. It helped slowly but surely. Although still riddled with anxiety, we have been able to keep it at bay with very little bouts with the OCD. About a month ago we (the counselor and I) noticed some signs of it escalating again. She is very repetitive with her obsession and continually expresses concern and guilt over 'bad' words said in her mind. (Words that she would NEVER say otherwise, like frickin', stupid, hate).There is nothing I can say, nothing I can do to ease her mind of her latest obsession or her concern for the 'bad' words said in her mind. I feel helpless, and she is exhausted and in a perpetual state of anxiety. I miss her smile and I just want her to be happy again.
We have NEVER tested positive for strep. Is it a coincedence that it is spring again? I'm not sure what to do, or if this is in any way relative to this topic. Any suggestions are helpful. We live in Edmonds Washington.

Serendip Visitor's picture

I had OCD as a Child .. There is hope for Children w/ OCD.

I read about your daughter and I felt as though I was reading about my self as a child. I'm now in my early thirties but had severe OCD as a child...I had other obsessive compulsions as well though. Back then it wasn't really talked about like it is now and my mother, who sounds alot like you, did everything she could. I can remember seeing countless psychologists and other professionals and even ended up in a type of in-patient hospital as a last resort(of course only a 2 week temp stay.. my mother really didn't want to but the doctors convinced here it was in my best interest). I was diagnosed by multiple doctors with OCD. I can remeber being little, around 2nd-3 rd grade and thinking why? Is this gona last forever? Anyways I could go on and on but I just wanted to let you know it gets better. Over time the obsessive thoughts started to go away ( Some weird obsessive thoughts still pop up every once a while & i still worry a lot, but I can control it & I would say for the most part I'm pretty normal ;). I just wanted to let you know that there is hope for her and for you:) It doesn't last forever, at least the severity of it diminishes. Ill say prayers for you and your baby. I know she will be ok:) If you ever need to chat or have questions or if she has questions please respond to this comment and i will be notified by email.. Maybe I can answer some questions or just be someone you or your daughter can relate to. I know exactly how it feels and what goes through their little heads.. not being able to control it and the obsessive guilt too. I remember having to always have my hands clenched in fists just so they wouldn't touch anything bad or dirty and a big part of the ocd was having to tell my parents if i did. Also I washed my hands obsessively, anytime I touched ..well anything:/ But...It all pretty much went away:) It's strange because I had forgot about alot of this stuff. I saw something on TV and that's how I ended up googling it and ended up here ... Well anyways ...There is hope! I really think your little ones will be ok. I know what it's like being the child but I'm sure being the parent and not being able to do anything and having to watch your child go through it is heartbreaking. I know it was for my parents. Hang in There!!!

Just realized the original post is over a year or more ago .. Hope things are better for all the little ones I read about on here. I'm sure there are lots of new info out there that's alot better than what I may know but as I said I went through it and have seen and felt it through the eyes of the child.
BTW my mother doesn't recall if I had strep or not but before the OCD, not sure how close to the onset of it, but I was hospitalized for pneumonia and had an extreme high fever( she said the doctors actually had to pack my entire body in ice to drop my temp..Apparently I almost died. I was on an IV and medication in the hospital for a few weeks. Somehow while I was there with numonia I caught some type of other infection she thought it was hepatitis but not sure if that's accurate .. again this was 20 something years ago so its hard to recall). That's the only relation I had Strep/Pandas or anything similar. Maybe try finding more info here . Take care.

Juniper's picture

Reply to Help

My daughter has OCD and Tourettes. She does not swear like some people do, but she focuses on words. Sometimes they are bad words she is just able to refrain from saying them at this point. Your daughter may be starting Tourettes type symptoms. does she have any repetitive body movements or ticks such as eye blinking excessively? This may not be the case. I just thought I would bring it up in case it helps. Good luck!

Lori's picture

Your daughter's Anxiety

Hello LAMP~ I can tell you what I've learned about OCD/Anxiety. First of all, NO it's not a coincidence that your daughter's ocd/anxiety has returned during springtime. My son, who is now 14, developed what we thought was tourette's syndrome back in 2008. Upon researching and surfing the web, the word P.A.N.D.A.S. kept popping up related to what my son's symptoms were (involuntary muscle movements, OCD rituals, anxiety). Long story short...4 years later, a visit to a doctor I found in CT who treats children with P.A.N.D.A.S, (not necessarily caused by just strep), ran all these tests on my son, and we found out that he has past and active lyme's disease among other past viruses that he tested positive. However, the doctor said that since my son is prone to sinus infections, primarily in the springtime, he believes he has strep trapped in his nasal cavity. He was put on two months of augmentin, which he showed signs of improvement in his tic movements, but not the OCD rituals. He later was given prednisone to drain the strep from his nose. His tics seemed to disappear for a short while but later returning with the OCD rituals still in full effect. You see, he was supposed to be on a much higher dosage of augmentin to start, but the doctor was hesitant since he developed c-diff colitis years ago on cephalexin. I guess what I'm saying to you is, your daughter doesn't necessarily have to test positive for strep in order to be diagnosed with P.A.N.D.A.S. There are other viruses and infections and allergies that can trigger the autoimmune response that cause PANDAS. This is what the doctor told me. He is an immunologist/allergist who specializes in the treatment of PANDAS. He also has his own infusion center located on the premises of his office. IVIG infusions is sort of a last resort to treatment of PANDAS if the antibiotics and/or prednisone do not work. I hope this helps. Good Luck.

Serendip Visitor's picture

Hi Lori, What is the name of

Hi Lori,

What is the name of the doctor in CT?

anyone reading this blog, do you know any good doctors that treat PANDAS in NC?

Thank you!

Lori's picture

CT Doctor

The doctor in CT is Dr. Dennis Bouboulis (pronounced boo-boo-liss). He is located in Darien, CT. There is also another doctor who specializes in the treatment of PANDAS; his name is Dr. Rosario Trifiletti. He is located in Ramsey, NJ. This NJ doctor is the one who treated all those high school girls from Leroy, NY who mysteriously and suddenly all came down with tourette-like tics. Good Luck....Lori

Lori's picture

CT Doctor

The doctor in CT is Dr. Dennis Bouboulis (pronounced boo-boo-liss). He is located in Darien, CT.
There is also a doctor in NJ, Dr. Rosario Trifiletti; he is the doctor responsible for treating all those high school girls in Leroy, NY who came down with Tourette-like symptoms all at once, at the same time.
Good Luck....Lori

kwartist's picture

awareness can help others

Kids with P.A.N.S. are worldwide and we can make a difference together. Parents need to take care of themselves in order to be able to help their kids. I have witnessed this and watched how it makes siblings feel as if they are now living among strangers... when it is actually their big sister.

Serendip Visito  jennifer's picture

make a difference

What can we do to make a difference when the doctors where I live don't have a clue what I am talking about when I say pandis

hungry joe's picture

Strep Throat cured by Fasting

Just a quick note here that I have found the best cure for a strep throat is to fast for a day or two. Rarely does it take more than that.

I would give more details but these posting things haven't worked for me at all today, so until they start working properly . . .

Serendip Visitor's picture

Yes, fasting stimulates

Yes, fasting stimulates autophagy which means the cells "eat" intracellular pathogens for food because they are being denied food from an external route. Many papers back this up. It has worked well for me for thyroid pain caused by strep infection (supposed to be rare, but happened to me). 5 years of thyroid pain disappeared after only 2 simple 15 hour overnight fasts. I am continuing with fasting twice a week to get on top of strep in my gut.

Jennifer's picture

need PANDAS specialist in VA/MD area

How is the best PANDAS specialist in the VA/MD/DC area? We are in WV but nearby. My 15 son with HFA has PANDAS and needs more aggressive treatment. Thanks.

Serendip Visitor's picture

specialist in Md

Hey Jennifer! I hadve hears of specialist in Bethesda, Md. I'm I'm NC so not sure if that is anywhere near you. Dr. Elizabeth Latimer. -If you scroll down on that web page you will see that it says Dr. Latimer specializes is treating PANDAS. Also there is a recruitment for Pandas patients to be involved in a clinical study right now with some of the most experienced Pandas doctors in the world. Here is the #for the one I'm Bethesda- 1-800-411-1222. Good luck to you!

Serendip Visitor's picture

Specialist in MD


Do you know any good specialist in NC?

Thank you!

Jaci's picture


Hello, I live in Loudoun County, VA, so probably near you, and I was wondering if you found a local specialist? I am sorry I can't help you, but I am checking into treatment for my son, so I wanted to see if you found anybody. Thank you in advance for your reply.

Lori's picture

PANDAS Experts

Hi Jennifer,

I am unaware of PANDAS specialists in that area, but I know you can find one through the PANDAS Network site. If you google PANDAS Network, the site will come up, and there is a link to contact them if you have any questions. They may be able to refer someone in your area. I'm not sure if you are willing to travel to CT, but this is where I live, and my son sees a PANDAS doctor that is currently treating him.

Cynthia 's picture


Anyone in the Portland Oregon area specializing in adult PANDAS?

Laurenza's picture

Doctor in Portland OR

Did you happen to find a pediatrician in Portland who deals with PANDAs?

Serendip Visitor's picture


Hi my son is in process of being diagnosed with pandas by my dr here in NJ. He is on antibiotics. Can anyone tell me if they have had a great day in treatment and then a bad day the next. We thought we were on the home stretch but now seems to be having a bad day with anxiety today..please help if you have any info

Serendip Visitor's picture

Doctor in NJ

Hi...the doctor my son is currently seeing is located in CT, but there is a very good doctor in NJ that is well versed in treatment of PANDAS. His name is Dr. Rosario Trifiletti (Ramsey, NJ-I believe). In fact, this is the doctor that is currently treating all the teenage girls who suddenly came down with tourette-like symptoms in upstate NY. He seems to think it is an autoimmune response to a trigger, and he is currently treating them with great results.

Patrice 's picture

Need a doctor

Who is your doctor in New Jersey? We live in Southeastern, PA (Chester County). Do you know of any other doctors? Thank you!


Lori's picture


My son began treatment with antibiotics this past February. Initially, the first two weeks on the antibiotics, his tics began to diminish, especially his eye blinking. We thought we were home free as well. By the beginning of the third week on the antibiotics, all of his tics slowly returned. My son also has OCD issues...tapping, touching things repeatedly. It takes him a very long time to tie his shoes, due to the fact that his laces have to be just right. His personality has changed as well. Although the tics seemed to have subsided in the beginning of treatment, his OCD did not. Upon questioning his doctor as to why a sudden return of his tics on the antibiotics, he commented that he most likely needs to be on a Prednisone Burst for at least two weeks, because the antibiotics were not strong enough to possibly eradicate the strep (which he thinks may be in my son's nasal cavity). My son is unable to be put on a high dosage of antibiotics, because he contracted c-diff colitis a few years back on another antibiotic he was taking. I live in CT, and the doctor my son sees is a specialist in PANDAS diagnosis and treatment. The next step is the prednisone, but I haven't begun treatment for him as of yet. I am waiting until he has a few days off from school to start the treatment. His doctor did a whole immune work up on my son, and we also found out that he has past and active Lyme's Disease, so that needs to be addressed as well. He went ahead and tested 14 Serotypes of antibodies my son has to fight off the strep virus. Out of the 14 he only has 4 that help his immune system to fight off the strep. I also had the doctor test my son's titres to check if he still has immunity towards all the childhood immunizations he had years ago. I haven't given my son any immunizations since 2007, due to all of his tics, twitches, etc,.. Once his test results came back, I found out that he DOES NOT need any immunizations that are required, because he still has immunity towards all of them. I needed these results to present to the school district. Keep in mind, if your son has strep/PANDAS, you don't want him infected with any virus, even if it's a small dose of immunizations. I can go on and on, but I hope this helps.

Serendip Visitor's picture


New to PANS/PANDAS....are you saying not to vaccinate your child if they have PANDAS? Unfortunately I did vaccinate my kids until I realized all the issues with vaccines. They haven't had any in a few years, but I'm sure they are due for the "regular" ones. I usually research and then decide whether or not to give them it.

Serendip Visitor's picture

Immunizations and PANDAS

When I asked my son's doctor about vaccinations for my son, he said it isn't a good idea to vaccinate him while he is currently experiencing an autoimmune response to "something". You see, he believes my son has PANDAS and most likely was triggered by having multiple bouts with strep. Once tested for strep, his results were negative, but he only has 4 out of 14 antibodies to fight off the strep virus; Which leads him to believe that he is carrying strep somewhere in his body, like his nasal cavity. My son is also very prone to sinus infections as well. His doctor went on to say, until his body is "back to normal", we shouldn't be exposing him to ANY virus, which also means he needs to stay clear from vaccinations as well. This could trigger another autoimmune response in his body. My son was given antibiotics to try and eradicate any strep in his system, and although it helped him somewhat, he wasn't able to be given the full course of treatment to allow his body to heal, because he had developed c-diff colitis years ago on another antibiotic. I asked his doctor to check all of his titres to see if he is still immune to all viruses, because he was once immunized for all his shots. I needed this proof to present it to his school, since he has now entered high school. His results indicated that he is still protected from measles, mumps, rubella, chicken pox, hepatitis, whopping cough, etc,.. I think the only result that was negative was for tetanus. Once he is older, and his body has had a chance to heal a bit more, the doctor said that slowly he can be given immunizations, especially before entering college. I hope this helps. You said your child has had immunizations before. Have the titres checked to see if immunity still exists. If so, the vaccinations aren't necessary.

Paula's picture


Does anyone know of a PANDAS specialist in the Philly area?

Serendip Visitor's picture

I've had it

I've had Pandas myself, and it's been a few years since. Only kids can get it, before puberty. I got tested, but all my results were all over the place, and finally a doctor diagnosed me with Pandas. When I got diagnosed, and read about it, everything made so much sense. I was a straight A student, playing four sports a year, doing Science Olympiad, on Student Council, and friends with everyone. I wad put on a ton of medication, and finally I got an IVIG. The next day after I got that I went to the emergency room, and I was diagnosed with aceptic meningitis (not the one that can be spread) but that was because they didn't put if in right. I went from the perfect daughter to screaming, gettingad, having vocal tics, handwriting getting worse, and not knowing what had gone wrong in so little time. I've gotten the IVIG twice, and am feeling health. I'm going back into sports, and in the fall will go back to school. I got diagnosed the middle of seventh grade. I missed the last month of seventh grade, and I went back to school in the fall for eigth grade, but didn't completely finish the first semester. I'm in ninth grade now, haven't gotten sick, and finally after two years am healthy and getting my life back. It's hard going through this, and those who have, no one will ever understand them. I've been to many doctors and hear the same thing, "it's not a real disease." But it is. If you saw me or anyone with it you would know for sure that it's real. Many people think they have it, and are worried their kids do, but it is so very rare. I know from personal experience that if is the toughest thing to go through, my mom was crying, I spent hours going to doctors, and my life fell from beneath me. I can't wait till fall to go back to school, and Pandas takes a huge toll on your family. I remember that most days I wouldn't even show up until eleven it twelve for school. It was tough. I'm home schooled this year, getting through the rest of eighth grade and ninth, and even if wouldn't say this then, I'll say it now. I'm glad I got diagnosed, because if I didn't it would've gotten worse. Also, I thank the doctors who helped me, and God for keeping me healthy and helping me and my family throughout this.

Samantha's picture

You are a brave young lady

You are a brave young lady and certainly one to be admired. GOD bless you:)

CT Visitor's picture

helping someone we know with pandas

My son has a friend who is 11 that they think has PANDAS. I had never heard of this. Today my son asked me what his friend has as kids are saying that if he even sees a crack in the wall he has to go to the nurse. I feel terrible for the boy and his family. I know that they were giving him antibiotics. From comments related to this article I see that perhaps an IVIG or switching to organic foods and no dairy might improve the condition. My son has Type 1 diabetes and celiac disease, which are both autoimmune diseases as well. There is no history of autoimmune diseases in our family. Why are so many autoimmune diseases on the rise? What can we do to help my son's friend who has PANDAS and his mom and sister that he lives with?

Serendip Visitor's picture


my son who is 9 has P.A.N.D.A.S he was diagnosed just after his 8th birthday. I got thru the first couple months with support and lots of it co-workers and friends helped to keep me grounded and kept me researching. Alot of doctors don't believe in it so as a parent of a P.A.N.D.A.S child you do the bulk of the research and advocating for your child. I would suggest the mom go to facebook the link is called PARENTS of kids with P.A.N.D.A.S this group is the most knowledgable group of parents that are all going thru the same thing. Let your son know to be patient and kind his friend can't help some of the quirky things he does. I wish there was more I could offer just be there to support maybe help research if you have the time.

Lori's picture


Hi...I just read your comment and feel for your son's friend. What happens every time he sees a crack in the wall is the effect that the infection, (whether it is strep or some other infection), is causing him to act this way. it is an autoimmune response that attacks the brain cells, therefore he is unaware or unable to control his actions. This is the OCD part of this disease. I'm not exactly sure where your friend lives, but I am in CT, and my son is currently under the care of a specialist who dedicates his work towards PANDAS. He has helped many, many children and adults. He is extremely knowledgeable of infusion treatments (IVIG), and he has currently put my son on antibiotics. My sons were not breast fed as babies, and through much of my own research, I firmly believe this is where it all began. I have identical twin boys, and both of them were bottle fed from the get go. I didn't realize the effects of breast milk and a child's development and strengthening their immune system. What's done is done. But I do stand behind this, and I think it is so important during a child's first year of life. If you would like the name of the doctor my son is seeing, please let me know. I'm not sure if we're allowed to indicate names on this site, so I would appreciate it if someone let me know if it is okay to do so. Also, tell your son that this is something "normal" that happens when children have PANDAS, and that his friend can't help it. I'm sure your son is a terrific friend to him.

Jaci's picture

Hi Lori, I just want to tell

Hi Lori, I just want to tell you not to beat yourself up about the breast feeding. I believe in it too, and I breast fed all five of my kids till they were at least one. However, we've had all kinds of tics, OCD, ODD, and ADD things going on, so really? Let yourself off the hook :). I'm researching the whole PANDAS thing right now, and I notice that a lot of your posts help me the most to gain some clarification. So I just want to thank you.

melanie's picture

parents helping parents

I know I'm reading a post from 2012, but maybe you'll still see this... I just wanted to say that I think it is extremely kind of you to say what you did to Lori about letting go of the guilt for not breastfeeding. It was thoughtful and meaningful, especially considering you did breastfeed your children. I hope more parents reach out to one another like this. As a mom with a pandas son(age 9) who was raised Catholic, I carry yplenty of my own guilt, lol.... but, seriously, it is truly amazing what a small statement like that can do :) Thank you!

Serendip Visitor's picture


Hi Jaci....I just wanted to say You're Welcome. I try to add as much input/info as I can with the hope of helping others who are going through this. I have learned a great deal these past few years just through my son's own experience with PANDAS. He is doing better, but not out of the woods just yet. He was currently taking Doxcycyline for a past and current infection of Lyme's. Hopefully, he won't develop any symptoms from having had that in his system, which most likely went undetected until his doctor in CT diagnosed him. My son still has tics every now and then, but they aren't noticeable as they were before treatment. The problem we are faced with is that my son is unable to have the full course of antibiotic treatment in order to rid him of all his tics. He was on 500mg augmentin, 3x a day for two months. He suffered from c-diff colitis 4 years ago while on a cephalosporin antibiotic, so his current doctor was a bit reluctant to give him such a high dosage. So we are sort of "stuck" right now, because his symptoms have diminished but not all. I am faced with the concept of forging ahead with the proper antibiotic treatment and run the risk of activating his c-diff colitis at such a high dosage of antibiotics. He is also taking a very good probiotic...I give this to him religiously...on or off any antibiotics. All in all, he seems to be fine with all of this. Like I said, his tics have diminished, but the OCD remains the same. We will be visiting his doctor soon. In the mean time, everything seems to be better. If he ends up staying the way he is today, I thank God for even the slightest change, because it has made a difference in his symptoms. Good luck Jaci. E-mail anytime.

Kristen's picture


To Lori,...would you please let me know the name of the doctor in NJ that has helped. My daughter was recently diagnosed. Thank you. Kristen

Lori's picture


Hi Kristen,

The doctor is located in Connecticut. His name is Dr. Bouboulis in Darien, CT. If you google his name, you can view his web site. He has a very informative site and talks about treatments as well. Good luck to you and your daughter.

Serendip Visitor Lynn's picture

dr for pandas

I was curious to see who you see for the PANDAS in CT. I live in RI and my son was diagnosed at the end of last year with PANDAS by his pediatrician and he referred him to a neurologist who we saw in Jan and she pretty much told us that he fits the profile for it but she doesn't believe in PANDAS. She said she might eat her words in 5 years, but that's where she stood right now. Which was no help to us. I have tried to research dr's in our area familiar with PANDAS and I found a Dr Louise Kiessling but she retired last summer. I am waiting for an appt with the group of Dr's she worked with. I read your comment about the breastfeeding and my son was breastfed just under 10 months.

Lori's picture

doctor for PANDAS

Hi Lynn,

I would be more than happy to give you the name of the doctor my son sees in CT. His name is Dr. Dennis Bouboulis in Darien, CT. He is actually an immunologist, allergist and asthma specialist. He is very well versed in PANDAS, and has treated numerous children including adults. He was on the Today Show in 2010...he was the only doctor who was able to help this one girl who developed a sneezing tic after having a bout with the common cold. This girl's mom had taken her daughter to several doctors, who all misdiagnosed her, until she heard about Dr. Bouboulis. He was able to eliminate her tic within two weeks of treatment. Check out his web site...once you google his name and location, (Darien, CT), you will see a link to his website. There you will find the Today Show video, and a lot of info in regard to PANDAS. If you would like to e-mail me privately, that's fine; Please let me know. Good Luck to you and your son......Lori

Paula's picture


Hi Lori -- We just moved from CT to PA, and I'm wishing I had known about this doc before we moved. I am just learning about PANDAS. My 14 year old had sudden onset of OCD and an Anxiety Disorder in 5th grade -- it was like she was one kid, then she was another. School aversion, separation anxiety as if she was a preschooler all over again, developed Trichotillomania at the same time (which is also related to Tics). I didn't know about PANDAS back then. Wish I did. Now, I'm wondering if that is what she has. She had strep 3 times this past year, and her symptoms are much worse again -- same as 5th grade, but worse. She's actually failing out of 9th grade at this point; however, it is complicated because we also recently moved, and that could have exacerbated the anxiety and OCD, too. Anyway--I can't seem to find a doc that will really take this seriously, find out what is REALLY going on here, and pay attention! I would love to email you privately, as you seem to have some good info. my email is

I guess my main question is: Since she HAS been on antibiotics a few times since 5th grade, yet still has the anxiety/ocd/trich symptoms -- does that mean she does NOT have PANDAS?