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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


Rachel's picture


I, too, am in KS and was wondering if anyone has had any luck finding success with a doctor who deals with PANDAS in the KC area?


Linda's picture

Another KC mom needs PANDAS

Another KC mom needs PANDAS doc! I am also looking for a PANDAS doc/clinic in Kansas City for our 7 year old son. He developed these symptoms when he was 3 or 4 and they come and go, lasting longer each time. Need help quickly!

Anonymous's picture


there is a dr. in cleveland who can help you. IVIG has been given to my granddaughter who ha been non stop sneezing since dec. 2009.look under ariicles about the 12 year old girl with sneezing , lauren johnson. his name begins denis B lynn johnson is a PANDAS adovacate, the girls mother

Serendip Visitor's picture

cleveland Dr for PANDAS

Can you get me the Cleveland Dr's name. We live in OH and I have not found a Dr. in OH who treats PANDAS. My son has struggled with this for 7 1/2 years.The only treatment we have been given is drugs and it really hasn't worked so well.

Keri's picture


My son is 8 and on Thursday began developing facial tics that included eye rolling, blinking and head jerking. I began looking for information about what could be wrong after we noticed it several days in a row.

I found information on this condition not knowing that there was a potential relationship between group A-strep and the sudden onset of OCD and/or tic disorders. He had strep A within the last 4 weeks and his strep culture just came back positive again. However, his titer levels were considered within normal limits.

We have noticed an increase in his activity level, decrease in some of his writing fine-motor skills and of course the tics (which occur 5-8 times per minute). We have not noticed any OCD behaviors or some of the other behaviors that they have linked with PANDAS (separation anxiety, decline in math calculation, etc.) Our school has been trying to keep us updated about what they're seeing during the day as well.

Right now we're just watching and waiting to see what happens. He's on a course of antibiotics for the active strep infection and we're downplaying the tics so he doesn't become concerned or self-conscious about them. We have 1 more week of antibiotics, then another strep culture will be done to see if he continues to test positive.

I know that symptoms can become very severe in some children, so we're considering ourselves fortunate that his is limited to a tic disorder and symptoms that don't prevent him from daily function and academic participation.

This article was well-done...very user-friendly. We don't officially have a dx of PANDAS yet, but I am convinced this is what my son has after all of the research I have done on this condition.

Shelley's picture

Just a thought

Hi Keri,

Have you investigated the possibility of Rheumatic Fever? You might want to look into it....I've been doing alot of research as well, since my 6 year old son is going through his second case of strep in 4 weeks, along with his second dose of antibiotics and a second body rash! The first rash was more like scarlet fever, but this rash is different. The Dr. said it wasn't antibiotic related, so I'm really not sure where this one is coming from.

Good luck,


Anonymous's picture

Can PANDAS cause motion disturbances and car sickness?

My 6 year old child who has PDD NOS was very ill at Christmas and given breathing treatments and not tested for strep. His class had 5 cases of strep and some scarlet fever, 2 weeks later I tested positive for strep. His behavior in January was very OCD and very difficult behavior with his eyes looking weird (which happens at times). But whenever his eyes look like that I know his behavior will be aggressive, defiant, and difficult and yet he is typically a very compassionate, loving child. His OCD increased during this time with a very weird "scratching behavior". My question - have you heard of PANDAS causing motion disturbances or carsickness. My son has never been car/bus sick since birth and we travel alot and he has been in school for 4 years. He gets sick at least once a week since Christmas and he is a sensory kid who usually craves rollercoasters and extreme sensory input. I haven't been able to find anything regarding visual/motion disturbances but would be interested to find out if any other kids suffering from PANDAS have had this happen.

Anonymous's picture

Googly Eyes

I was wondering if your child's eyes go "weird" - if it is the same as our 14th month old. She has been fine until about 2 weeks ago when we notice, usually later at night, right before bed, her eyes seem to rolls around for a second, like she is out of it, then BOOM back to normal girl again. It lasts 2-3 seconds at most.

I cannot find anything on it but I am very worried.


Anonymous's picture

could it be pandas?

My 10 year old had strep at 6 months and prob. 6 reocurring strep infections after. His tics developed almost overnight. He calls them his habits. He can go months without any and then develop a new one like blinking, opening mouth over and over again, His latest was a head jerking movement that was pretty constant. He also has adhd and oppositional issues. I know a fair amt. of info on pandas from a friend who's son had pandas but is now symptom free from ivig and antibiotic treatment. Does this sound familiar to others. That adhad could too be a symptom of pandas?

Trina's picture


Does anyone know a dr in the Tennessee area that treats pandas?

NoSleepo4Mommy's picture

Tennessee MD

I recently went to Dr Kalb at Cool Springs family medicine and he seemed well versed on Pandas, we shall see :)

Serendip Visitor's picture

Dr. Kalb...


I have a 10 year old that has been diagnosed with PANDAS. We are moving to the Nashville area. How did you like Dr. Kalb? Does he do IVIG??

Linda's picture

10 year old son

My name is Linda. We have a 10 year old son, Hunter, who was ill in December along with one of his brothers. My husband and I were out of town for the few days that the boys had fever and were ill. Never went to the doctor. Several days later we began to see changes in Hunter's behavior and attention. Teachers reported that it was as if someone had switched off a light. Took him to his pediatrician because Hunter reported that he could not focus and he was having sudden intrusive thoughts. Things then began to get worse...OCD type behaviors, lost in the hall at school, bed wetting, not able to speak or eat, odd thoughts, walking around the house with his face against the wall, crying,... We removed him from school and took him to see a psychologist. Could not explain and had not seen this type of OVERNIGHT regression before. Thought about hospitalizing him. Dr. said that it looked like Post traumatic stress. To us it looked like a nervous breakdown. Kept him out of school and made an appointment with Dr.---PhD, MD, FAAP (Pediatric Neurologist) in the Houston Medical Center. He asked us if we have ever heard of PANDAS and said that he is not stating that this is what he has because it is not a confirmed medical diagnosis and he has not seen a patient with this before. My husband and I have read what little we could find on the topic and it describes what happened to Hunter almost exactly. Hunter has been improving and has been put on Prozac, but not sure if this is the correct thing to do. (could be temporary OCD???) No one seems to be able to give us any direction on where to go from here, what to expect, is this permanent damage to his brain, or how to protect him from this again. Should we contact researchers on the subject? Are there doctors looking for people who may have experienced this? I keep fairly detailed information and documentation on Hunter. I looked back at my documentation and found that Hunter had a short "Odd" type of "episode" last year and I was able to see that this also followed an illness of Strep. (As a side note: Simultaneously, while we were dealing with this with Hunter...we were also dealing with HSP (another rare autoimmune illness followed by Strep, with the son that had Strep at the same time Hunter was ill.) Dr. --- is having Genetic testing done and has ordered 2 different titer tests for evidence of previous Strep.

Would you happen to know of current research or researchers that we could contact or studies to join? We would be willing to go or do whatever it takes to avoid another reoccurrence of this very scary illness / episode. My doctors have been nice and willing to listen, but I would rather have a doctor with experience in this and leading us rather than us leading them. Houston Area Doctors???

GARY SALEM's picture

This response is for Linda. I



Katie's picture

8 yr old w/ anxiety problems -Pandas?

When my daughter was 5 old she was diagnosed with Strep & doctor put her on medication. 3 days after given her strep meds she developed a extremeb body rash with high temp & I took her back to doc and he diagnosed her with scarlet fever & she got a stronger dose of antibiotics. I do want to make a note that that year she had strep so much the doctor/pediatrition wanted to take her tonsils out after her scarlet fever. We never ended up taking her tonsils out because after she her scarlet fever things went down hill. She started crying when I had to leave her with her daddy-which she never did. She started really struggling in school. She couldn't read simple words like she was. I took her to eye doctor & her vision suddenly went to needing glasses. Her grades continued to get worse & she struggled more. Besides school she wouldn't eat away from home because her fear of getting sick. She got very thin. She had fears of her mother or father getting hurt, so we couldn't leave her sight. She is also obsessed about things like washing hands, where she sits to eat-it went on & on. This went on for 2 long years. In between those years she was diagnosed with strep maybe 2x. She went to a psychologists for 3 months before my husband & I relocated to a different state & she was diagnosed with anxiety/OCD. was scared to death to move knowing our situation. She is now yrs old & we have lived in our new state for a little over than 1 year. She got strep within the first 4 months of living in our new state/home. Nothing new -she struggled in school. We can't get help with the schools because she's not learning disabled the schools say. She still had seperation anxiety. She
can't go to a friends home to play because of it. She still won't eat away from home. She constantly has a mental breakdown when she does homework. She also picks at herself until she bleeds-her face, ears, hands,etc. It's exhausting & I'm tired. My daughter was NOT like this. The doctors just want to put her on medication. Someone help me! I know in my heart that she has PANDAS. thanks

Kelley's picture


Hello, I'm reading your message about your daughter, I have a six year old daughter who has the exact same symptoms as yours. I'm wondering if she finally received help? I'm so exhausted from notknowimg how to help her . Any info would be greatly appreciated.
Thank you,

Serendip Visitor-Katie 's picture


This is the scariest feeling to have about your own child. The first thing I did for my daughter was got a copy of all her health records (visits since birth). We lived in Kansas at the time and couldn't find a doctor to believe me when I talked about PANDAS to them. I went to therapists to therapists at different offices and many minutes...hours...days on researching myself. At the time PANDAS was pretty New in the US and doctors didn't know much or didn't have a lot of information on it. Get your daughter to a good Pyschatrists that specializes is OCD and ADHD. That way she won't get mid-diagnosed like my daughter. My daughters symptoms wax and waned for years at a extreme level. It was like Jekyll and Hyde. We moved out of Kansas we things were going good at the time for my daughter for a job my husband took in Georgia. It was heaven sent for us. My daughter had another onset of her symptoms again and I found a psychiatrists office that was able to see my daughter immediately with the therapists. Within a few visits the therapists said my daughter needed to see Doctor(pychatrists) immediately. So they were able to get me in the next day and we spent a hour and half with the Doctor the first visit. He went over everything with me and my daughter seperately. He said that she had missed diagnosed wrong and that he wanted to take a long hard look at her health records that I had multiple copies of. The next day when I saw him it was a hour visit and he said that his wife was a pediatric doctor and that this was a very unusual pattern of strep throat. NOTE; I didn't mention anything about pandas to this doctor because I got tired of being shot down and treated like I was a fool or crazy parent. The psychiatrists asked me if I have ever heard of "PANDAS" ...I broke done and cried in front of him and I said yes...he said then you have done your research and your a great parent for this. I told him no one believed me and that's why I didn't mention it to him. SO....he immediatley gave her a book for us. One side is parents and the other is children. It's called "Talking back to OCD". Since her symptoms were lot of OCD this book was awesome . He explained that this is no curable but dealing emotional/psychology of it is. He gave her a very very small dose of lexapro to help take the edge off so her mind could work through her thoughts with the book. The books helped learning tips for both of us. To help her sleep at night we had created a pattern of busy things we would do that worked for her. She was able to communicate to me when she felt at worst.
She is now 15 and doing just fine. We still see the same doctor. BUT when my daughter has a sore throat or gets sick with fever. The doctor give her penicillin to take for 3 weeks. After a few times taking Penicillin her strep illnesses slowed down. Please tell what you need help with. I will do whatever. I have been in your shoes...very scary. It will get better but you have to find a doctor who will listen to you! Keep me posted

Anonymous's picture

my daughter has been dealing

my daughter has been dealing with ocd/anxiety-panic attacks, anarexia and now goraphobia for 5 years now I truly believe she has pandas syndrome and have been trying to get someone to believe me for years. she started with a strep infection that went to a rash that peeled away layers of skin and all this happened over night right down to the separation anxiety etc. my advice is dont give up , if you believe it is pandas keep telling someone till they listen and dont take no for an answer

Anonymous's picture

My daughter was diagnosed

My daughter was diagnosed with pandas at 61/2. I did antibiotics but the only real hope was ivig. She improved 70% from the ivig. She is still not at her base line yet- but she is SO much better! You need to find a doctor who will do ivig. I am so grateful for ivig- it truly helped he rso much.

Linda's picture

Thank you so much for your

Thank you so much for your response!! Our pediatrician was able to get a phone conference with Dr. Nicolaides from NJ and Hunter has been officially diagnosed with PANDAS by our pediatrician. He is being treated with antibiotics. I have been on the PANDAS network and the PANDAS fondation. We have read so many parents say how Dr. K was able to help their children!! We have his name and number, just in case we need to take this to the next step!! God bless him and all the other doctors helping with this scary illness!! I hope and pray that your son is improving. The word is getting out...our school counselors got an email from our school district administration informing them about PANDAS!

Bethany R. Brinton's picture

OCD from Scarlett fever, advanced strep, PANDA from strep ears

One of our sons came home from school, in the first grade and started to wash his hands non stop. He would take a step away and then step back and begin washing and he couldn't pull himself away from the water. A day later he had a fever and then a rash. Scarlett fever. Four of his classmates in his NYC elementary school had it at the same time. We now have a younger son who has down syndrome and ASD. The Southwest Autism Center told us he had PANDA. This younger son who has continual ear problems and surgeries, also has permanent OCD with water and other things, but water is his main issue. The most common cause of middle ear infection is strep. The Down Syndrome population is OCD from ear issues, I believe and not just stubborn. Studying indivuals with Down Syndrome, may open up understanding in this field, because their anatomy is more likely to harbor strep, in their middle ears.

Anonymous's picture

Tourettes and tonsil removal

After reading this "article " I wonder if removing the tonsils, of a person with Tics or Tourettes syndrome,get some ease from
the Tics.Do you know if there is any infor or publishes articles on this.If yes please let me know how I can get the information.

Thank You !

Anonymous's picture

PANDAS Doctors Lists

If you need a list of DOCTORS helping with PANDAS the following web links will help.
(this is a parent generated list)
(send them a request for doctor's name in your state)
(send Beth Maloney a request for a doctor's name in your area)

Wendy's picture

Looking for Dr. in canada?

I'm looking for a Dr. inc Canada that might be able to help our little girl who is being tested to Pandas has all the signs and symptoms that come on over night she is 9 years old. Thanks for your help.

mia's picture

PANDAS Dr. in PA area?

My daughter has experienced all symptoms of PANDAS with positive strep tests for the past 3 years. Once we started antibiotics, the symptoms would slowly resolve. Our pediatrician recommended reading up on PANDAS but nothing further. This year, we were really struggling to clear up the infections- we would go through three courses on antibiotics on average to finally get it cleared up. We had her on clindomiacin (?) along with rifampin (?) and still weren't able to clear it. We finally had her tonsils and adenoids removed in August. After the surgery, she broke out in terrible hives all over her body- esp legs- along with swollen ankles and wrists. We took her to the pediatrician and they tested for strep. This test came back negative, so they told us it was a reaction from all of the antibiotics. It did clear up within a few days on benedryl, but the OCD symptoms were back. I had them test her three more times over the course of a couple of months and all were negative. They finally recommended seeing a psychiatrist, who diagnosed her with OCD and generalized anxiety. I am having trouble believing this since the symptoms always resolved on an antibiotic before surgery. They are hesitant to test her titer levels since we know there was an infection right up to her surgery. I could use a doctor who knows PANDAS well and can give us a definite diagnosis. Our psychiatrist doesn't believe it's PANDAS and put her on Zoloft. She reacted terribly and we had to take her off after a week. Would you recommend a neurologist? We are in the Chester County, PA area.

Sheila Trahan's picture


Please trust me and take your daughter to an Integrative Medicine doctor in your area that works with children. You can go to to find one. I am confident that they will correctly diagnose and truly get to the root of the problem, not just cover up symptoms with more drugs. I have a similar story to yours with my son who is 12 y.o. Conventional medicine does not have the has taken me 12 years to get where I am now. My son has OCD, severe anxiety, ADHD, and Epilepsy. He is spinning out of control and just tested positive for PANDAS as well as many other body systems and nutrients that are out of kilter. These doctors are truly like a medical private investigator and WILL get to the cause of your child's problems. We are working with antibiotics now as well as many nutritional supplements to boost up his brain health. I wish you all the best and hang in there.....there IS a cause for these problems.

Anonymous's picture

mesial temporal sclerosis

my name is tony i had rheumatic fever at age 7 i am now 52 i have dealt with many symptoms all my life with great uncertainty- these articles give me some peace and insight into the possible origins of my epilepsy depression anxeity and vitiligo i am fortunate to live a reasonably normal life but the uncertainty made me question my own judgement

Anonymous's picture

Dr Josephine Elias at

Dr Josephine Elias at Childrens Hospital Philadelphia Pa

kelly's picture

pandas dr. in pa.

i live in the philadelphia suburbs. i would be happy to pass along all of the info i have gathered over the last few years. i appreciate your frustration with drs. who do not believe in pandas. been there!(yes, even at chop)to keep things simplified ,i will tell you where we have had some success. my son has severe ocd. we have established definate patterns to his constant and chronic strep infections(one requiring hospitalization for few days)and ocd excasserbations. he also had been treated by our c.h.o.p. neurologist with the typical ocd meds and had a terrible neuropsychiatric reaction. we were referred to dr. christopher lam. he is a psychopharmacologist. he was the first person to listen to me when i insisted there was a pandas issue not being addressed. he actually asked if we had seen the pandas expert at chop, dr. josephine elia. funny how neurology didn't mention the existance of such a physician after my repeated requests to explore this path and my familiarity with swedo's work.(i even emailed her research assistant begging for direction a couple of years ago.)we consulted with dr. elia and she did offer us plasmapheresis therapy for my son. unfortunately the chances of it having therapeutic benefit after such long exposure to strep antibodies, is markedly decreased. it is still an open door for us, however we chose a more promissing treatment. dr. lam referred us to the national institute of mental health for a riluzole study in children. dr. paul grant is conducting the study. this is the same group who did the pandas research. the good news is, my son is responding to this treatment. he has been on riluzole since aug. 2009. he seems to be a "late responder", but he is responding. glutamate is the targeted neurotransmitter. there is so much evidence supporting this, and the area of study has exploded!
dr. christopher lam is at the children's hospital of philadelphia.
dr. josaphine elia is at chop as well.
dr, paul grant is at the nimh in bethesda, maryland.
feel free to contact me if i can offer more info.
good luck with finding the best treatment for your daughter!

Anonymous's picture

PANDAS doctor in PA

Look on the website: for A LOT more information. Also, if you contact me at:, I can give you more personal info, and names of doctors, research, etc. (haven't found anyone in PA, yet, but certainly would like to.

linda's picture

underarm pain

Has anyone experienced their child having underarm pain or problems with tight clothing, during an active time of PANDA, or when a child has strep?

My son will not even put on a coat (it's winter in MN) because he cries that his arms are in SO much pain. It is heartbreaking! He had this condition previously and then it went away for 8 months and now is back full force. He currently has strep and we just found this web site. Could it be this?

Thank you.

Anonymous's picture


My 8 year old daughter has recently began showing signs of PANDAS. I have an appointment with her doctor tomorrow, but I am concerned that she won't listen. Does anyone know a doctor in Kentucky that has dealt with this?

Courtney's picture

On October 7, 2009, after a

On October 7, 2009, after a couple of days of fever, my 8 year old son was diagnosed with Type A Influenza. Exactly one week later on October 14th, he suddenly began crying constantly, confessing things, and having obsessive thoughts. I became very concerned, being as though on Tuesday he was fine and on Wednesday things drastically
changed. This behavior continued and I brought him to a therapist. The therapist told me that he had OCD and that it was more than likely caused by “an emotionally traumatic event.” I also brought him to his pediatrician, because I felt like there had to be a medical explanation for this. This doctor told me the same thing as the therapist. There were no changes in our family, home, or school life that would constitute an emotionally traumatic event. Over the past year, he has had strep throat a couple of times. Could this be PANDAS????

My son is an intelligent, humorous, fun-loving, polite, honor roll student. He is now suffering in school, crying before school, taking days to complete short assignments, refusing to answer simple questions, and is unable to make any kind of decisions. He has also been very scared and worried about everything, from getting in trouble to ghosts in his room.

I’m not sure what steps I need to take in order to make this better. We live in Southwest Louisiana. Any suggestions??????

Anonymous's picture

Is it PANDAS? Need a doctor in Iowa

I have severe OCD and developed it as a young adult almost overnight. Am very interested in finding a doctor in Iowa that will be open minded enough to test for PANDAS related OCD. Can't get my family doctor to believe in such a thing and am so frustrated. I would drive out of state if I could get info about doctors in neighboring states. Please help.

John's picture

I found this doctor in

I found this doctor in Chicago.
I hope he can help .

Anon's picture

I heard about this on the

I heard about this on the morning news. It made a lot of sense. I am lucky in the sense that my OCD is I guess, what you would call on the lower scale. During stressful times it becomes worse. AT various times in my life is takes different forms from counting to picking etc. My therapist didn't even believe that I had OCD because I do function fairly well. I am 34, and as a child had continuous strep ear and throat infections from the ages of 3-10. To the point that my balance is damaged from the strep ear infections. I also have anxiety/depression probably caused by low serotonin. For most of my life I have had a lot of my life I have had a lot of shame about not being able to just handle it, stop the behavior, or feel better. That somehow it was my fault that I couldn't handle things the way other people do. Knowing that there may be explainable medical reasons, help me to be more forgiving to myself. That is why this research is important. So kids growing up don't blame themselves any more than someone with asthma or some other medical condition they did not create.

kristine Osbakken's picture

rheumatic fever

My mother was autopsied upon my request as a result of being morphined to death by a hospital. The autopsy showed, that though old, she was a basically healthy person except for scarring of her heart valves, which the forensic pathologist attributed to rheumatic fever. Rheumatic fever is caused by strep.

My mother had outbursts all her life, sleep problems, sustained anger and fatigue. Her children never understood her harsh, quixotic nature. Learning about the wide-ranging effects of strep finally sheds light on what may have been her underlying malady.

Oh, yes...she obsessed from my childhood till her death at 97 over a number of issues. Even as school children, we realized her obsessions were not normal, but we had no control over them nor on the effects on us.

Wen's picture

Seeking Dr in Texas

Seeing a doctor in Texas that knows and has treated a child with PANDAS. Will go anywhere in Texas if that is what it will take to see a doctor that really understands and has a lot of experience with PANDAS. Pediatrican has never heard of PANDAS, reason seeking to find someone that knows. Thank you!

Anonymous's picture

Dr. In TX

Hi there. I saw your post. Check out "The Thoughtful House" in Austin. They will be very familiar with PANDAS since this infection is not uncommon for kids on the spectrum, since they have weakened immune systems. They treat this regularly. They are also well known and get patients from all over. They are MD's in bio-medicine. My son is being treated by a wonderful dr. there. Either that or find a DAN doctor - they should be very familiar with this protocol. Chances are you won't get anywhere with your pedi. Here is a list by state:

I am going to copy and paste this message for the other couple of people that asked for dr.'s in TX. Good luck.

Anonymous's picture

Your search

Did you receive any response re your inquiry for a Texan physician with Pandas experience? My 9 year old son had a very rapid onset of OCD in June and we realized about a month later he had a strep infection. We cannot seem to get his ASO levels down and he seems to be going through another increase in his OCD behaviors right now. I'm in Kansas City and my pediatrician as well as the infectious disease docs here at Children's Mercy don't buy into the Pandas connection.

I do have family in TX and am willing to travel to get help.

Any info you can provide is great!

Anonymous's picture

PANDAS dr. in TX

Hi there. I saw your post. Check out "The Thoughtful House" in Austin. They will be very familiar with PANDAS since this infection is not uncommon for kids on the spectrum, since they have weakened immune systems. They treat this regularly. They are also well known and get patients from all over. They are MD's in bio-medicine. My son is being treated by a wonderful dr. there. Either that or find a DAN doctor - they should be very familiar with this protocol. Chances are you won't get anywhere with your pedi. Here is a list by state:

Good luck!

Sylvia's picture


My son was diagnosed with pandas 2 yrs. ago. He had a long bout of tics his first year, few months second year and this year its been a few weeks in July and it seems like a new one is about to begin. Does anyone know any doctors in Texas that treat children with Pandas? Please let me know!!!

Debbie's picture


I have a friend with OCD and wonder if someone could please send me more info as to how to get a doctor that understands this strep and ocd connection. Also the news cast that recently showed a segment on a 19 yr. old who had OCD and found out it was caused by strep. He is now well and going to college after treatment. I think this was aired on a news show with a doctor the weeks of Sept 7th though Sept. 22. Possibly the Denver news stations.

Anonymous's picture

My son will be tested

My son will be tested tomorrow Oct. 26 for antibodies. Sure he tests positive. He has ocd and sleep problems along with bowel problems. He cannot keep a job. Had beta strep when he was born, pandas were also diagnosed. I sure hope my son can start a new life. Will keep posted.

Anonymous's picture

my son

When my son was at the beginning of his fourth grade year he came down with a virus. He was sick with a fever for one week, I took him to the doctor asking them to check for an infection. They said there were no signs of infection and that the virus would have to take its course. He was back two or three weeks later with strep and then put on amoxicillian. He then continued to be sick with stomach problems and lots of diarreah. This went on for weeks until the Doctor tested his stool and we were told he had giardia. He was put on another anti-biotic. This helped. A week later, my son could not go to school one morning. He told me he was too sick when he was at school, he was extremely nervous, sweating, having a fast heartbeat, and stomach aches. He was having severe panic attacks. This was six years ago. He is not much better, we have to home school him. He very rarely leaves the house, and he gets very little relief from his anxiety. He was a great student, who played baseball and hockey, had many friends. Is it possible that my son could have PANDAS? Is it possible that he could come out of this horrible life that he lives? We live very close to Boston, and would appreciate any information on who we can see for a PANDAS diagnosis? Any help would be appreciated. Thanks.

Cheryl Stasis's picture


I am going through the same thing with my 16 year old.
He had surgery for a severely broken ankle in August 2008.
He started 9th grade on crutches and soon refused to go to school. He, also, was very active and had lots of friends.
Now he just refuses to go to school and gets very anxious.
His strep blood levels were over 800 in May and I am waiting for results of more blood work that was done on Friday. He was going for his 1st degree black belt in Karate, played basketball, cross country, baseball, and golf. He was, also, a sponsored motocross rider. This seems so crazy...looks like he'll be tutored or I'll be teaching him at home...there has to be an answer...these wonderful children just changed over night...I've seen so many doctors that my head is spinning and we are getting no where....he was put on zoloff 7 months ago and there is no change so I know it is more than regular depression...he was treated with amoxicillin, but I've heard that undertreated strep can cause this...he now developed a rash and I think I'll have them get me an appointment at Children's Hospital in Boston and, hopefully, he'll get the treatment he needs or at the very least, a diagnosis...did you have any luck getting a diagnosis? His school suggested Pandas, but nobody in the medical world is listening...I'm very frustrated as I had to have him repeat his freshman year of high school and this year isn't any better....I'm thinking he picked up a virus when he broke his leg because they left the wound open to heal to avoid another surgery to take pins out...please let me know if you found any answers..I'm at my wits end and don't want to see him throw his whole high school years away...he went from being an honor roll student to failing 9th grade...I don't get it and I don't understand why nobody can figure this out...
thanks for listening

Deb's picture

Another mom suffering with an OCD child.

I am very interested to find the same information out. I have been looking for someone who may understand what we go through on a daily basis. I would love to talk to you about this.
Thank you,

Karen's picture


I too had strep & mono as a child. I am 47 years old & have had OCD for many years now. I would like to find a doctor in Oklahoma (preferably Oklahoma City). Does anyone know of one?

Anonymous's picture

I am in desperate need of

I am in desperate need of answers regarding PANDAS. I am in St. Louis, and I'm hoping you know of a Doctor in the St. Louis, or surrounding area, that has some knowledge of PANDAS??

In October of 2008, shortly before our Son turned 8 years old, we suddenly saw his behavior change and he developed a shoulder "tic", along with these horrible "sleep episodes" (I've determined they were in between sleep walking and a night terror because he was extremely frightened and he could some what communicate with was during these episodes that lasted for 20-30 minutes). He had no signs of strep throat. School had just started at the end of August and we thought the behavior/tic were related to the new school year. So, we waited several weeks to see if the behavior/tic would subside.
Well, everything worsened, and we took him to the Pediatrician in December 2008. She looked him over and said he seems to look fine, but decided to do a rapid strep test, because strep can sometimes cause tics. It was positive, and he was given an antibiotic. He seemed to slightly improve about 5 days after started the antibiotic. Then, 12 days into the antibiotic (with only 3 doses left) all the symptoms were back and much worse. He finished the antibiotic, still no better, so I scheduled an appointment with the Pediatrician. In the mean time, he was so anxious, scared, and would not leave my side. He followed be throughout the house. He started seeing and hearing things "that were not there". I was frantic and I started doing some research on the Internet. That's when I found the PANDAS website and these symptoms:

ADHD symptoms (hyperactivity, inattention, fidgety)
Separation anxiety (Child is "clingy" and has difficulty separating from his/her caregivers. For example, the child may not want to be in a different room in the house from his/her parents.)
Mood changes (irritability, sadness, emotional lability)
Sleep disturbance
Night- time bed wetting and/or day- time urinary frequency
Fine/gross motor changes (e.g. changes in handwriting)
Joint pains
Our Son, HAD a sudden inset OF ALL of the above symptoms, and a positive strep test, a tic, and OCD tendencies. I printed the information I found and mailed it to his Pediatrician, along with a note explaining everything. (Our Son was also extremely sensitive/emotional and I didn't want to discuss all if this in front of the pediatrician during his appointment). A few days later, he goes to his 2nd appointment. The Dr. Has read the information I sent. She does a rapid strep, and he's positive. She then takes blood and the results show an elevated Strep Titer. She gives him another dose of antibiotics.
So, from October 2008-April 2009 he has had all the PANDAS symptoms. In April he is finally 100% back to OUR SON!

Our Son, does NOT have another strep infection (that we know of, since he never shows the normal fever, sore throat, ect) until June 2009, but the other symptoms are still present since October 2008. He gets another round of antibiotics...all symptoms are still present. The Pediatrician does not have any advice for me. She only gives antibiotics when there's a strep infection. She will not consider prophylactic penicillin, because of antibiotic resistance. She has no idea what my family has been going through for the last 7 months! On my own, I've took him to a neurologist, who referred him for an MRI and an EEG. The neurologist didn't seem to know what to do and said the MRI and EEG results were normal.

I started shopping at Wholefoods....our son doesn't eat anything with artificial colors or preservatives, and this helps with the ADD/ADHD symptoms. I also start an Omega/DHA supplement. He also drinks Pro-biotic filled Kefir and eats Pro-biotic filled Stonyfield Yogurt, in an attempt to boost his immune system. After about 6 weeks of this he has returned to our normal son.

From July 2009-September 2009, he does not show any signs of PANDAS.

School started in August.....5 days ago, Our Son started having a facial tic, ADHD symptoms, Mood changes, sleep walking, frequent urination. Yesterday I took him to the Pediatrician and told her I think he has strep. She asked his symptoms and looked at his throat and I could tell she thought I was crazy. His throat looked fine, he had no fever, ect. I reminded her of what happened last year and she agreed to do a rapid strep throat test. She looked surprised when she came back to tell us it was Positive. I knew it would be positive......and it starts all over again.

I am hoping and praying that the NO artificial colors or preservatives, and addition of Pro-biotics and Omega/DHA supplement to our Sons diet will help to make this round of PANDAS less severe and shorter than in the past. His school work, social life, family life, ect. are extremely impacted while he's experiencing PANDAS.

I have many questions and I would like to schedule an appointment with someone who can answer my questions, and hopefully give me some suggestions to help my son. It is my job to protect, nurture, and provide for my Son. I don't think I'm fulfilling my duties when I take him to his current Doctor. I know there has to be more than can be done.

While I don't feel, at this point, that his PANDAS symptoms are severe enough to warrant plasma exchange or immunoglobulin (IVIG), I do feel prophylactic penicillin would be helpful during the school year. Our pediatrician won't even consider that do to the antibiotic resistance, which I have told her would be a SMALL PRICE TO PAY for a PANDAS FREE child!!

Will PANDAS episodes get worse?
Will he out grow them? Or will this happen when he's 30 and contracts strep?
What else can I do to help him?

Thank you in advance for taking the time to offer any information you can.

Cynthia's picture


We also live in the St. Louis area. I wondered if you had any luck finding a doctor to treat Pandas. My son had it, and I wonder if he could still have it even though he had his tonsils out last June after 6-7 months of constant strep. He changed overnight. Most symptoms are gone except anxiety.