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PANDAS: A link between strep throat and OCD

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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


Serendip Visitor's picture


Our child is currently on clavulin for ocd symptoms. After having great days after starting clavulin, his ocd symptoms are worse than ever! He was complaining of probs when he had to pee and we suspect yeast. It seems like we take one step forward and go back two because of yeast issues! How can he maintain abx treatment when we gets such severe psychiatric issues from yeast? Will ivig help with yeast causing such ocds, tics, etc?

Serendip Visitor's picture

I developed severe OCD after

I developed severe OCD after the birth of my first child. I had strep throat infections most of my childhood and was given round after round of antibiotics. I did not want to go on anti-depressants and after researching the issue, I decided to try and get rid of the yeast overgrowth that I had as a result of being given even more antibiotics during the delivery of my baby (I was strep B positive) and from years of various other infections. I started out by doing a colon cleanse with Mag07 and then by doing a 21 day candida cleanse. By the end of the cleanses, my symptoms had subsided enough that I no longer felt out of control. I started taking mulit-strain probiotics afterwards as maintenance along with St. John's Wort and have not had anymore issues with OCD. Four years have passed and I am currently pregnant with my second child and tested negative for Beta-strep and although I stopped taking St. John's Wort once I found out I was pregnant, I have continued to take probiotics on a daily basis. I think treating a problem that was caused by taking lots of antibiotics with more antibiotics is counter-intuitive. It makes more sense to me to try and get the body back in "balance" so that it can function properly.

Sandy's picture

Thank you so much for this

Thank you so much for this information. I completely agree with you that treating PANDS with antibiotics seems to be unwise. I plan to try your regimen with my 20-year-old daughter who has mild OCD symptoms, including trichotillomania. I had rheumatic fever as a child, and my daughter had repeated cases of strep. She also had frequent joint pain (primarily knees) that we assumed were growing pains. I now wonder if the "growing pains" might have been associated with strep. I also recently took her to a naturopath, and test results indicated a lot of yeast in her blood. She also has cystic acne. I am trying to get her off carbs, and believe dairy is unhealthy for everyone. My intuition tells me that your regimen would help her.

Jaci's picture


I would be very, very interested in learning your daughter's response/success with regards to her trich, if you don't mind sharing. Thank you! You can PM me if you'd like.

Sandy's picture

Strep and Trich

Jaci, I'm afraid controlling the eating habits of a 20-year-old college student with her own apartment has proven to be more challenging than I anticipated. She got a very contemporary hair cut - short like a boy on one side and long on the other. I think the side she used to pull is now short. Since she pulled split ends, this hair cut has helped. She left for New York in May, so I haven't seen her since then. I have a feeling her symptoms will have to worsen before she will be willing to make the necessary dietary changes.

Theresa 's picture


Hi , Looking for Dr in California who is treating Kids with PANDAS. My son has high ASO titers and is having severe anxiety, with seperation anxiety. NO Ticks. Do symptoms get worse? From what I see my son is a mild case compared to others.

Stephanie LA's picture

Response to Mollybyday

The neuropsychiatrist that treated my daughter's PANDAS is Dr. Josephine Elia at the Children's Hospital of Philadelphia (CHOP) in Philadelphia, PA.

Serendip Visitor's picture

Your daughters visit to Dr. Elia

You posted that she went, but I wanted to see the outcome. What happened at your visit? Were you told she could recover?

Stephanie LA's picture

Dr. Elia @ CHOP

Dr. Elia diagnosed my daughter with PANDAS and successfully treated her with a regimen of antibiotics for 3 weeks, She began her treatment July 2008 and since then, she has been symptom free. I know PANDAS is a controversial diagnosis and people are hesitant about the use of antibiotics, but Dr. Elia literally saved my daughter's life.

Lori's picture


Hi glad to hear that your daughter got the right help at the right time. The problem I'm faced with is the unknown cause of my son's Tourette's and OCD. It all started with tics. When he was 6 years old his eyes began rolling to the side, so I brought him to an opthamologist who said he had vision problems and a lazy eye. He gave him an eye patch to wear and a prescription for these glasses which he was unable to see out of. Needless to say the glasses were short-lived. At around 5 years old he began having strep infections, sometimes 2-3 a year. He has a twin brother and they would often pass the strep on to eachother. This continued since he was about 12 (repeated bouts with strep). In between all those years he has also come down with Fifth's Disease, cowasakie disease (hand/foot/mouth disease), Mono, sinus infections, Impetigo (unclear if was properly diagnosed), c-diff colitis (from cephalasporin antibiotics to treat the impetigo/staph)....I know I'm forgetting something here. In 2008 he must have had strep throat 2 or 3 times in the early part of the year....sometime around October he broke out in this rash all over his torso. I took him to the dermatologist and she diagnosed it as dermatitis (something he reacted to that he must have eaten or laundry detergent). A few weeks later he began to have anal itching and I noticed that his peri-anal area was so very red. I immediately thought STREP (b/c I know that it can show up in this area too). He went to three different doctors, and all three with different diagnosis....psoriasis was one diagnosis, possible lichen sclerosis was another and she gave me this really strong corticosteroid to put on there (but I never did). The last diagnosis was Dermatitis. This doctor seemed to think it was something he ate and reacted to and to leave it alone. I had all three doctors do a strep test to see if it was anal strep and they all came back negative. It is now 4 years later, no rash down there - gone. My other son developed the same exact red rash on his peri-anal area one week after his brother and again I was told it was psoriasis. His rash came and went and not to be seen as of today, so I doubt it was psoriasis. What is wrong with these doctors!! That same year in 2008 after all those bouts with strep and being on antibiotics several times, he developed internal poison ivy and was given prednisone to treat it. Later on that year in December he began to complain that his neck was hurting. This went on for about a week, until one evening he went to bed and woke up the next morning with all of these tics and twitches all of a sudden. At the time the only noticeable OCD he may have had was mild smelling of food and his fingers. I went straight to a neurologist and brought to his attention all the strep he has had since 5 years old, and he basically told me this was not PANDAS. He tested him and it came out negative for strep. He said I would need to wait a year in order to get a diagnosis of Tourette's Syndrome. So I kept a log of all of his many ever changing movements and slight OCD for a year. One year later he was officially diagnosed with Tourette's with no sign of PANDAS. Now this doctor seemed a bit condescending each time I asked a question related to PANDAS. He just did not "sit well" with me....I felt as though his knowledge of PANDAS was incorrect. We stayed with him for the next 4 years (not sure why), and just recently my son began showing more signs of OCD...tapping, touching, counting, flicking lights on and off, hesitating before walking through certain doorways, straightening his pencils, shoelaces, etc,, brushing his teeth becomes a 20 minute routine - water goes on and off several times, showering takes about an hour due to the fact he is tapping things in the shower, opening and closing shampoo bottles and looking up about 15 times. I don't know what to make of all of this. I'm thinking this could be non-pandas OCD/Tourette's, but what if it's not? What do you think?

Linda's picture

Does anyone else find it

Does anyone else find it astounding that so many of our children have PANDAS all of a sudden??? What has happened here? Is it something they were fed (everyone is talking about something happening to our beef such as hormone and anti biotic injections) or is it the shots the children revieved? What has happened to our children?

michele's picture

Ryan's parents

I was trying to respond to your post. Thanks for your response. I live in OH and wondered if I could email you? My email is . It is too small of a world. We saw Dr. Erenberg since my son was 1 yr old for the tics. He had referred us to a psychiatrist for meds for the comorbid symptoms. He was a real nonbeliever in PANDAS and I had not been back to see him in the past year and a half. I can't believe he was treating your son for PANDAS. I have been searching for a Dr. to do IVIG. WoW! Thanks for the update. I hope it works this time. My son is back in exacerbation and we are trying to get the tics and compulsions to resolve. Did he ever prescribe antibiotics for your son? How is he treating him daily? I would love to hear from you. Michele

Robert's picture


In response to your post, my son's tics started in Jan 09 after a strep infection. He was first treated in Children's Hospital in Pittsburgh. He was treated with a low dose of Hadol and upon increasing the dose he had a dyskinesia one night which immediately stopped the tic. He went symptom free for about 10 months and then after another strep infection he had his tonsils removed and about a month later the tic returned and lasted for about 5 months. We took him to Cleveland Clinic and he saw Dr. Erenberg. I tried him on several different antibiotics and Dr. Erenberg tried him on several different classes of drugs without relief. Then we titrated him back up on Hadol but the tics remained. Finally after two 2 day courses of ivig infusions 2 weeks apart, the tics gradually disappeared in about a two month period of time. We finally had our son back. He did well for 3 months and then the tic returned about 3 weeks ago. One thing we did do which I didn't realize we shouldn't was update his childhood immunizations. Whether this was the cause for the return is anybody's guess. I hate to think it was. During the time Ryan was tic free, he was on penvk 250mg two times a day. Since I am in the medical field, I have also tried him on Clindamycin and Azithromax. I really can't get an answer on what antibiotic or how much to put him on. Everything is hit or miss. Last Wednesday and Thursday, he did go through another 2 day course of ivig at Cleveland. If I see no resolution in 2 weeks, I would like to go with another course of it. I do know that the brand of ivig he had this time is different than last time and he is going through alot more severe headaches. Only time will tell. I don't know how the forum operates and if you can get my email but I would like to talk to you. My email address is

Robert's picture

Michelle, If you get this,

If you get this, reply to my email at Since I am in the medical field, I think he has been pretty willing to get my input. It has been only been 3 days since he had the repeat course of Ivig. It does take time to react. The first time he had it, I had to convince Dr. Erenberg to repeat it in 2 weeks. I do believe in my heart this is what brought he out of it before and hopefully will do it again. I can really sympathise with you. It is a real hell, both on the child, parents, and other sibblings who feel neglected. Let me know if you get the email. I would like to talk to you by phone if possible.

Keri Dickman's picture

Children's Mercy in KC

I am from a small town in MO, and suspect my 2 year old may have PANDAS. Our physician referred us to Children's Mercy in KC, however is I have heard that they don't really believe in the whole pandas thing there, and could tell our physician here probably was not a believer as well. I am not sure whether to keep the appoitment or seek out another dr. and of course I am not certain this is what my son has, but feel that it is a very strong possibilty. Any advice from anyone who may be familiar with Children's Mercy or just any advice from parents who have dealt with this situation? Thanks-

Serendip Visitor's picture

pandas dr

did you find a doctor because I was very disappointed with our recent appointment in KC at children's mercy. they tried to admit my child for a inpatient psych eval over christmas. I have already had a psych eval. my child is responding to antibiotics prescribed by my gen practicianer, but I need someone who will actually believe in this diagnosis for long term treatment.

Linda's picture

Does anyone else have a

Does anyone else have a PANDAS child who presents with a severe rash on the child's bottom? I feel so sorry for my son who is in such pain and has been for several weeks. The anti biotoc is suppossed to be helping, but I don't know...

Sheila Trahan's picture

PANDAS Dr. help-across USA

There are a handful of great docs across the country. The best place to look is

There are also a couple in the Charlotte, NC area that are not on the site.

Also, if any of you are interested in seeing an Integrative type medicine doc (M.D.'s)....most of them are pretty familiar with PANDAS. My son sees Dr. James Biddle in Asheville, NC.....he is fantastic, diagnosed him immediately, and has been invaluable in my son's treatment. He has made a miraculous turnaround and I would say is almost well!


Susan Yates's picture

I'd like to get support from

I'd like to get support from parents with a child with pandas. My daughter is 5 and I suspect she has it. Pls email me.

TMom's picture


Dear Susan,
I would be happy to speak with you about our experience with PANDAS. I am a mom with a daughter with the illness. You can email be directly--

Stephanie LA's picture

Child with PANDAS

Hi. My name is Stephanie and my daughter contracted PANDAS in 2007 and was diagnosed and successfully treated in 2008. You can e-mail me at or .

Serendip Visitor's picture

Son with tics

Hi Stephanie,
My name is Mrs. M. My son developed ocd after strep infection, which flared up his tics. I would like to know where did you get your daughter treated and how did they confirm that it was PANDAS for sure.

Mrs. M

Wendy's picture

Pandas doctor

Hi there,
Can you please tell me what treatment was used for your daughter's pandas? Are you still "cured"--I am starting to wonder if there is really a cure, or just remission until the next exposure. We may have started with strep, but in june it was a high fever, followed by months of staph impetigo, and tics have not resolved at all. some ocd, and loss of drawing skills, sep anx, etc...
Thanks so much.

Kari's picture

Kansas / Missouri / Midwest PANDAS discussion group

In short. I believe that my daughter is suffering from PANDAS -
Pediatric Autoimmune Neuropsychiatric Disorders Associated with
Streptococcal Infections. I am sure that I am not alone in my endless
search for help and information about this disease. Like any parent,
I am willing to go to the ends of the earth and back to find help for
my daughter. In my search, I have found countless blog posts and
message boards posts from parents across the greater Kansas City area
and across the Midwest - all searching for information and local
doctors and help. I am not a doctor - I am not an expert - just a
concerned parent. If your experiences have been at all similar to
mine in trying to find help for your child, then I am sure that you
understand the frustration and desperation involved with getting
people to listen, help, understand and BELIEVE what is happening to
your child. My hopes in putting this group together is to bring us -
the parents - together geographically. We all need to help and
support each other. We need to tell our stories and we need our
stories to be heard. I hope that this forum will be a landing place
for us as we wade through the world of this newfound disease. If you are in the Midwest. Please visit this group:

Serendip Visitor's picture


I am looking for a doctor to treat my son for PANDAS. We live in Wichita, KS. Please email with any names of doctors in the Midwest. Thank You, Jill

Linda's picture

Dr Flasterstein in

Dr Flasterstein in Springfield MO helped us (St John's Children's Center)

Kari's picture

I have not found any local

I have not found any local doctors yet. Another parent's post says that there is a doctor in Springfield MO. She had her first appointment on the 16th. Hopefully she will let us know how it went. Keep looking. Stay strong. Kari

christel king's picture

dr in KS MO

my son and one of my friends have PANDAS and see Jeremy Baptist in Kansas city Mo. he is an immuneologist and takes insurence.....we HIGHLY recommend him.

Linda's picture

What method of treatment did

What method of treatment did Dr Baptist use?

Linda's picture


FRUSTRATED PARENT checking in. Dr Flasterstein in Springfield/ St John's hospital is treating PANDAS children...BUT since Drew wasn't presenting during our 20 minute visit, he doubted my husband and I!! He would not even read the 5 page behavor/health log I typed up and faxed in advance. Finally after showing him video of our son's rages and photos of some OCD behaviors, he said "Well, maybe" and gave us a script for psych meds and antibiotics for the strep (which he said Drew will be on until he is 21). I don't want him on the pscyh meds sicne he is only 8 but we had no other alternative. He promptly slept all day long. First sleep he has really had in a year. We are headed to the clinic to get his antibiotics in the next few days. The Strep is crazy and this is his 4th or 5th bout this year 9and it is presenting in a bad rash on his body!!
Is it PANDAS if the meds work? Is it PANDAS if it doesn't?
By the way Dr Corinine at DIOKONOS Christian Center in Kansas City is amazing for the OCD and parent help. Please call him...he has seen other PANDAS children. They are going to wake up to this thing soon! It is growing exponentially...

Kari's picture

Hi Linda, Thanks for the

Hi Linda,

Thanks for the update. I can feel your frustration. I am meeting with our GP today to sit and talk seriously about our issues. I plan to get down to the nitty gritty with her and find out if she will work with us on this. If I find that she will work with us, I will pass on her name and information.

To all of the parents out there in the Midwest - I have created a blog (although I am not very experienced in this blogging thing) for parents to share their stories. Although this is a great platform, we are unable to share email and contact information on this site. If you would like to do so, please join my blog at

just copy and paste this link into your browser. Since we are all somewhat close geographically, I thought this might be helpful. We all need to share with each other and support one another. I also hope that parents in other geographic areas set up similar groups. I agree with Linda - "They are going to wake up to this thing soon! It is growing exponentially!"

Lets help them WAKE UP.

Stay strong. Kari

Concerned Mother's picture


You have provided a wonderful service to all of us who are concerned about the prospect of OCD in our children. I saw Sammy last night on T.V.
25 years ago when my son started exhibiting these behaviors we were beside ourselves with very few answers.He was eventually treated with seritonin uptake drugs. and behavioral therapy. Which helped some. He continues to this day to battle this disturbing disease. No one ever told us about antibiotic therapy. I assume it to be penicillin. As many of the others he suffered severe Strep infections as a child. His tonsils were removed when he was 19. An amazing article to this frightening and not so rare condition. This possible link helps with many questions in our minds. Thank you for printing it.

Serendip Visitor's picture

Son with Tics for 4 years now!

My son, now 12 years old has had tics for 4 years. He had been diagnosed with Scarlett Fever in Pre-school at age 4 1/2. He has had repetitive strep every year since. Sometimes several times. The tics started half way thru the 3rd grade. Before that, he was a perfect little boy with a lot of friends and no symptoms. Since the 3rd grade, his tics started with blinking. Then, it went to shoulder shrugging. Next, he started looking at the palms of his hands. Then, it was skipping and throwing his foot out in front of him and looking at his foot. Now, he is clearing his throat and pushing his head backwards and puffing his chest out! It is so hard to watch this as a parent. The kids make fun of him and he has been on 2 different medications. The 2nd has helped a little more than the 1st. But, I notice he gets breakthroughs and will go with no symptoms for months and then all of a sudden have symptoms for several weeks or longer. He constantly has to touch people. Sometimes it is constant hugging or poking. He would even get out of his desk at school and go up and talk to the teacher for no reason except to get up.
But, he always has to touch someone before he talks to them. There are times he acts like a very young child and lays on the floor at home if he is upset! That is behavioral. He is not a bad kid and the teachers at school love him and say he is always willing to help and always wants to hangout with the teacher instead of playing with the other children.
They call him a teachers pet and make fun of him. He plays sports but with his tics it is very noticable when he plays. The kids sit on the sideline and laugh at him. It is horrible! I even have parents that come up to me and ask me what is wrong with him!
I just want to keep him at home during the school year!! I notice less tics over the summer when he is at home and not sick! He has almost been symptom free until he got sick with what they are calling a bad sinus infection. But, he was complaining of a sore throat and had a negative strep. He has been on antibiotics for 2 weeks now. He still has some coughing and still has sinus issues. But, his tics have started back up in the last 2 days.
So, I am wondering if this is related?
**Any doctors that are on the East Coast in the Maryland, VA, NY area?
This has been a great site!

Serendip Visitor, Ruth's picture

doc in VA

Dr Eric Rydland (pediatrician in Charlottesville, VA as well as an office in south Florida) told me about PANDAS recently because of my daughter's OCD which started suddenly when she was about 8 yrs old which was nine years ago. I have only tonight gotten to read up on it. It sounds possible for her. Check out Rydland's website. I totally trust him - he is not your typical medical doctor. Above all, pray to God for wisdom, guidance, and direction!

Mitzi j Erazo's picture

thanks for your shearing my

thanks for your shearing my son is like your son too. IAM WITH YOU TANKS

Stephanie LA's picture

East Coast Physician Who Treats PANDAS

Hi. My name is Stephanie and the doctor that treated my daughter is Dr. Josephine Elia at Children's Hospital of Philadelphia, in Philadelphia, PA. She is a neuropsychiatrist who has studied PANDAS for years. She is an amazing physician who saved my daughter's life.

Jake M's picture

My son who is 5

Hi Stephanie. I found this thread when I Googled Doctors who treat in PANDAS in Philadelphia. Our son who is 5 developed an eye blinking tic and OCD behavior suddenly after an ear infection. After Christmas he was sniffling a bit and we took him to his Ped. where they discovered he had ear infections in both ears. He always has had ear infections, having tubes twice and his adenoids removed so we figured it was just another chapter in that saga. His behavior was normal at the diagnosis of the ear infections. He has always been spirited, being a highly intelligent child with a Type "A" personality brings out passion for so much. Two weeks ago a slow blink in the right eye, while on Omnicef treating the ear infections has turned into a full blown motor tic, consisting of eye blinking in both eyes and intrusive thoughts have started entering his mind as well, with OCD episodes over sleeves being too short etc. I worked with him all weekend controlling his emotions and encouraging him to beat back the bad "thinkys" where he has been able to be able to calm down quickly. This literally has taken me shadowing him all weekend. I can see him as himself under almost a thin layer of anxiousness that sometimes gets the best of him. The internet has helped me so much providing with so much behavioral tactics for the short term, but I know there is something else to this because of the sudden onset. We just scheduled an appointment with Dr. Elia and I wanted to thank you for your post. We love our son with all our heart and I would do anything to switch with him. I just was wondering if you had a similar experience with your daughter? We just hope we can find out what this is quickly.

Stephanie LA's picture

East Coast Physician Who Treats PANDAS

I live in southeastern Pennsylvania, and my daughter was successfuully treated for PANDAS by Dr. Josephine Elia at the Children's Hopsital of Philadelphia (CHOP). She is a pediatric neuropsychiatrist who not only believes that PANDAS exists, she has studied the disorder and has written published scholarly journals about it. She literally saved my child's life. I will always be indebted to her.

karen's picture


Can you tell me how your doctor at Children's Hospital treated your daughter?
MY son has been getting strep throat since April 2010 and I don't understand why. My son has since stopped eating solid food and does get ensure atleast 5 times a day so he's not losing weight. I have been seeing a psychologist and very slow process. Can you please give me any information how they treated your daughter because I don't know if the psychologist is going to work.
thank you

Stephanie LA's picture

PANDAS Treatment

Dr. Elia at CHOP put my daughter on 500mg of amoxicillin for three weeks....her PANDAS symptoms stopped almost immediately after treatment began, and she has been doing well since.

Linda's picture

If you look up "leaky gut

If you look up "leaky gut syndrome" and GAPS diet, that will help you. Our son lsot nearly 10 lbs last year and went from a size 8 to da 3T in the hospital. Docs didn't have any answers but did find colitus, which caused lots of pain. Going glutten free for the last 8 months or so was a big help and not hard to do at all. We also started getting our produce from a Whole Foods store ( pesticides). It was like flipping a light switch when I stopped the snack chips and cookies and premade, processed foods and just started giving him fresh squeezed lemonade (sweetened with Stevia)and home made chicken noodle soup (broth only for the first 2 days). The marrow in the chicken helps rebuild the lining of the intestine. (Free range chickens with out chiken feed; because that has grain with glutten in it and even that affected our son). Beano also helps him every morning, as well as probiotics and digestive enzymes for kids...
that is the majic recipie (speed course)
Eventually I started to make home cooked crock pot meals that I could prepare with oranic veggies in 20 mins before work...easy as that. Thanks to the GAP book, I was able to nurse him back to health. I will pray for you.

Serendip Visitor's picture


denis bouboulis md new york - immunologist specializing in pandas

Toronto Butcher's picture


Thank you very much for this one.

Michelle Baie

Serendip Visitor's picture

Although he tested negative

Although he tested negative for strep with a throat culture, he may still have strep. The doctor can order blood work that will tell if he has had a recent strep infection. I believe this is an ASO titer. My sons have had strep before that has not shown up in a throat swab. I have discovered that the tics and behavior can reappear with an illness(does not have to be strep). I live in Roanoke, VA and have had a great peditrician and neurologist. Basically it has been trial and error. For almost 8 years now the tics will increase in severity from time to time.

Jaci's picture


Hello, I am looking for help for my 22 yo son. You said you live in Roanoke, he goes to school in Radford. You mentioned a neurologist. Would you mind telling me who that is? Thank you.

Wendy's picture

pandas docs

Can you please tell me who your pandas docs are, and what treataments they use?? I live in Virginia too.

Serendip Visitor's picture


who is your pediatrician in roanoke virginia

Serendip Visitor's picture

Dr. Kunkle at Pediatric

Dr. Kunkle at Pediatric Associates

Serendip Visitor's picture


looking for a pandas doctor in new york. i live on long island.

Serendip Visitor's picture

Long Island PANDAS dr.

Have you found a Dr. here on the idsland that you can share,or has anyone else? Looking for one for my son..