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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


Et's picture

LI Doctor

Did you ever find a Pandas Doctor on Long Island ? If so please let me know.

Serendip Visitor's picture

Marney Jaffer with The New

Marney Jaffer with The New York Presb. Hospital in Westchester is my favorite.

Erin's picture

Any luck on finding a doctor

Any luck on finding a doctor in the LI area? My ped suggested that I look up PANDAS after seeing my son yesterday. I'm waiting to hear back from her but am curious to see if there are specialists on LI or I'd be willing to travel into Manhattan.


Richard's picture

Any luck in finding a doc?

My family is in Easthampton, and we're looking for a doctor in the area as well. Have you had any luck?

Serendip Visitor's picture

Genetic Testing for PANDAS

Is there any type of genetic testing done on the parents of children who have PANDAS? I have two family members from the same parents, who have recently been diagnosed with this and we all are wondering why and how this happened. Some has suggested the MMR shot has caused it????

Anonymous's picture

Ma General is doing an OCD

Ma General is doing an OCD genetics study and we participated. They do an extensive interview and either blood test or a swab
this is primarily for ocd but kids like my son who have fully recovered PANDAS may provide clues for genetic links

Serendip Visitor's picture

Genetic testing for PANDAS

I have two children with PANDAS also. I do not know of any genetic testing for it. I do know that there might be a genetic predisposition for it. I had a grandmother and aunt that had rheumatic fever. Since there is a link of strep between the two it is possible that parents carry the gene. Both rheumatic fever and PANDAS is an auto-immune response to strep.

Linda's picture


PLEASE HELP ME find a PANDAS DR in Kansas City, Columbia or St Louis who takes this seriously. Over the last 2 years our outgoing, intelligent, sweet son has turned into a frail, angry child who is wrought with OCD symtoms after 4 bouts with strep. We are a military family and dad will deploy again and I am frightened about trying to get our awesome 7 year old back on my own. I have heard Children's Mercy will not be a good choice...Your help is greatly appreciated! My email is . Please put PANDAS in the message bar.

St Joe Mom's picture

Dr. in KC

We live in St. Joseph, Missouri and have tried many doctors, but none in our area know how to treat. We just got back from Chicago where we saw Dr. Miroslav Kovacevic for IVIg for our son, age 11. Read the research by Susan Swedo and Perlmutter. IVIg and PEX have the best "cure" ratio, but are the most invasive and use a blood product-so there is risk there, too. We are only three days post IVIg, but we are seeing tiny little improvements and hope to see more in the coming weeks.

Kari's picture

In KC too.

Hello Joe Mom.

We live in Lawrence, KS and have had a difficult time finding help for our 7 year old daughter. I have a phone consult scheduled with Dr. K on the 9th of August. Because you are so close, I thought it might be beneficial for us to communicate about our children's cases. If you would like to do so, let's figure out how to exchange contact info. I am learning that finding people that actually "believe" you is so helpful. I hope all is well with your son now that he has had the IVIG. Best regards, Kari

Linda's picture


Just wanted to tell you about Dr Flasterstein in springfiled MO. He is a pediatric neurologist who just recently started treating PANDAS patients. Haven't heard much about him, but he is closer than Dr K in Chicago. We are seeing him on the 16th of Aug. His number is 417-820-9055.

Shirley's picture


Hi Kari

I received your message and I would love to exchange info about our children. Do you have a facebook account? My personal email is . We have had our ups and downs since the IVIG. We are scheduled for another on Saturday. I found my doctor in California. Dr. K was very expensive and for that amount of money, I would prefer a face to face visit. All PANDAS experts are expensive but if I could drive and meet my doctor Its a personal thing. Most people do consult with Dr. K.

Kari's picture

RE: in kansas too

Hi Shirley.

Please go to my google group that I just set up so that we can exchange contact info. The address is:

Thanks. Kari

Melissa's picture

Did you ever find a doctor to

Did you ever find a doctor to help? I live in Amarillo and have the same problem! I need to find someone who can help diagnose and treat my son.

Shirley's picture

Do you live in Amarillo TX?

Do you live in Amarillo TX? Have you found a doctor? Has your son been diagnosed? I live in NM. About 1.5 hours from Amarillo. My son is the only child diagnosed with PANDAS in the entire state of NM. Are you a member of the ACN forum? If you are, great, if not,I highly recommend you being part of this forum.

Serendip Visitor's picture

pandas in NM

Hello Shirley my name is Michelle and I also live in nm and my son was diagnosed with pandas last september. He recently had a second episode and we are starting all over again. Now that our pediatician is understanding and trying to learn about pandas things are getting easier but are still tough. I have been trying to find a local dr but have had no luck. what about you?

Linda's picture


I do not think that I can see your email address, I think this website may block that. I am in Texas not KC. We battled it out with many different doctors until our wonderful pediatrician was able to get a phone conference with Dr. Nicolaides from NJ. (Dr. that helped "Sammy" in the book and Mystery Diagnosis) Our son was as dysfunctional as Sammy but has been on Augmentin XR 1000 for 3 months and now half dose. (He is not well yet but slowly recovering) Many parents go the route of IVIG treatment with Dr. K in Chicago and we are considering contacting him if progress is no longer being made toward his healing. There are a few very helpful website that you should join for support and answers. DO NOT STOP LOOKING for answers...there is help, but you may need to travel, I don't know about your area. You can find a list of doctors on these websites. (not sure if this website will allow me to post them) If not email me back and I will type out the names.

Serendip Visitor's picture

looking for PANDAS doctor

I am looking for a doctor literate in tourette's and PANDAS. My 6 1/2 year old has had a few tics (nose wrinkling and finger-sniffing). About 3 weeks ago (a week after a high fever--never had her tested for strep), she almost overnight now has about 10 major tics (arm stretching with a finger-wiggle and stiffen, jaw thrusting, hair picking, fee flexing, eyebrow twitching.....). I am wondering if it could be PANDAS. My brother has Tourette's, and my 6 year old has some OCD tendencies all her life as it is.
We live in Virginia (Near northern virginia), and wonder if you have any doctor's names???

Stephanie LA's picture

I don't know of any

I don't know of any physicians in your state (I live in Pennsylvania), but in Philadelphia, at the Childrens Hospital of Philadelphia (CHOP), DR. Josephine Elia, a neuropsyciatrist, successfully treated my child. She was not in my insurance network, so I had to pay her rate of $400 an hour (this was in 2008), out of my own pocket, but she was worth every penny because my daughter is happy, healthy, and symptom free for almost 2 years now, thanks to Dr. Elia.

Serendip Visitor's picture

My daughter has had OCD since

My daughter has had OCD since 7 and just in September we put her on keflex and she showed marked improvement, then my other daughter got strep and my OCD daughter had a relapse of OCD symptoms and now is back on the same antibiotic, Keflex - seems to be going good - just want to see what treatment your doc used for your daughter as we are just starting this process. Thanks and so glad to hear you daughter is symptom free - it is amazing the difference in our worlds!

Linda's picture

Hi. Thanks for writing.

Hi. Thanks for writing. Please tell me the steps for treatment for your child. The Dr in Springfiled MO is treating Drew with psych meds and an antibiotic. Is that how you started out with your child. I am so unsure about all this! Please take me through the steps you followed for treatment.

Stephanie LA's picture

PANDAS Treatment

Dr. Elia put my daughter on 500 mg of amoxicillin pills (which is a high dosage of the antibiotic), 3 times a day for 3 weeks, but depending on the child, the treatment may be longer than 3 weeks....That stopped the seizures, tics, tremors....This treatment is called "prophylactic antibiotic treatment"....One caveat: what I have noticed is that when my daughter contracts a sore throat/strep throat, she starts to have slight tics...but her pediatrician will put her on antibiotics, and that clears the strep infection and the accompanying tics....It appears that kids with PANDAS are susceptible to strep infections, so I always have to be mindful of even minor illness with her.

Sheila Trahan's picture

PANDAS and seizures

Hello Stephanie LA. I was reading that your daughter with PANDAS also has seizures. I was wondering if you could share a few things:
1. what kind of seizures and where in the brain are they originating from?
2. Does LA mean you are in Louisiana? Are you seeing a Neurologist there?
3. How old is your daughter?

My son (12 y.o.) has complex partial seizures (Frontal Lobe Epilepsy originating from the Supplementary Motor Area). I am confident that the PANDAS has brought on the seizure activity and we are trying to prove that theory. He has been weaning off of his seizure meds with no problems and is almost finished with them, but if he misses a couple of doses of anti-biotics (Keflex), he starts to have "auras" like he will have a seizure again, so we are weaning him off of seizure meds for diagnostic purposes. Before getting the seizures under control, he was having 6-8 a day! Of course, he had all of the PANDAS symptoms too, OCD,tics, rage, irritability. We have come a long way in a year, and he is doing sooo well today. However, he has been on Keflex 3x per day since February 2010 and I cannot get him off because the seizures return and the OCD, rage skyrockets! I don't know how others are doing it with only a 3 week course of antibiotics? But I do know that my child went undiagnosed for many years, so maybe that's why. Also, I will note that he was on Celexa for anxiety and that was a big no-no. Kids with PANDAS should not be taking SSRI's NOR getting vaccines, until this thing is under control. I would love to compare stories with you. I am from LA but currently live in the NC/SC area....near the state line. We have a fantastic, saved our lives, Internal Med Dr. treating the PANDAS (Dr. James Biddle in Asheville, NC) and a Neurologist in Winston-Salem, NC (Dr. Cormac O'Donovan). The neuro is not an expert in PANDAS but is willing to learn and most importantly, believes what I am telling him! He is collaborating with my Internal Med Dr. and we are looking for a cause to the seizure activity, to therefore guide us better in a cure. Thank you for reading!

wendy's picture

why antibiotics for pandas?? if strep has healed..

I am wondering why antibiotics would help with tics, etc. if you are dealing with a kid who no longer has strep? My daughter (6) started having major tics within a week of a high fever. She had had one little tic and some ocd, but i wasn't concerned because my oldest went through about a year of a couple crazy tics then ended up being transient. My brother does have Tourette's, so I always worry from that angle. Anyhow, from what i understand, the antibiotics treat the strep while you have active strep (or prophylactically prevent another infection), but the PANDAS is a result of the brain being affected from the antibodies from the infection. So it's the antibodies that are causing the issues, which aren't affected by antibiotics???? Just trying to pediatrician did a throat culture a month after the fever when i was in for an issue with my son, and it was negative. I'm not positive it was strep anyway, as many kids in the area were having a fever for a day with negative strep. In either case, if the strep test was negative ONLY because it healed on it's own, then would there be any reason for antibiotcs?

Stephanie LA's picture

Antibiotics and Tics/Tourette's

Hi Wendy:

I'm not a physician or other medical professional, so I don't have the expertise to answer that question on a clinical level, but as a mother whose daughter suffered through PANDAS, and who has done research while seeking a treatment for my daughter, from what I understand, even though the active strep infection is no longer evident, the child with PANDAS symptoms often has an elevated strep titer....My understanding is that after the outward strep infection clears, they strep is still latently present in the body, and well after the infection clears, something will trigger the latent strep to in effect attack the neurological system, causing the tics, tremors, Tourette's, etc....My daughter had a strep infection in September of 2007, started having symptoms of OCD by October 2007, started having tics and tremors in November of 2007, and by December of 2007 was having full-blown grand mal seizures.....One of the reasons I suspected PANDAS was the culprut was that during her illness, she contracted other illnesses (bronchitis, urinary tract infections, etc.), and when she was treated with anitbiotics during these illnesses, her PANDAS symptoms disappeared, but of course, the pediatric neurologists at Hershey Medical Center and St. Christopher's didn't listen to me because I didn't have an MD.....My daughter has been fine since the late summer of 2008, but I do notice that she is prone to strep infections, and one of the ways I can tell that it is strep is that she will show slight evidence of tics....Her doctor immediately puts her on a 10 day regiment of antibiotics, and she is fine. For me, even if the strep culture comes back negative, unless a blood test is done to test for strep titers, strep may be present. I wuld rather err on the side of caution and put my daughter antibiotics as a precautionary measure than take the risk of having her experience the horror she experienced before.

Cynthia's picture

The antibiotics and a

The antibiotics and a tonsillectomy worked for my son. He had a severe tic during the strep. The tic completely went away and hasn't returned since the tonsils were removed.

Good luck.

Linda's picture

Thank you for your reply.

Thank you for your reply. The pediactric neurologist put our son on the same medication, however in liquid form. Now we are trying to work with his terrible skin rashes...tried everything under the sun. The doctors now are thinking it may be a yeast issue. His colitus and glutten/leaky gut issues have retruned as well. He keeps jumping from one problem to the next (in addition to the PANDAS issues). Seeing a behavior therapist who has worked with OCD Pandas children before has helped us to hone our parenting skills with this issue! Things are starting to become more normal, which I am so thankful for. Just nervous about the return of the symptoms. He still has bouts of anger and is very tired, but the Respiridol is helping. We were able to get a liquid form from our pediatrician, so we cold control it better. The neurologist wanted us to give him .25 ml twice a day which completely knocked him out. Our peditrician gave us this form and we can give him .15 ml twice per day and it is working pretty well.
Good point about the minor illness. My red flags, however, are usually crabby behavior at school. Drew is so good natured that I pay attention when a teacher wants to mention something to us about Drew acting up at school. Then we know to check for Strep. Go to or webmed MD for more info...

Serendip Visitor's picture

PANDAS Help in Kansas City, St Louis or Columbia

I read your message this morning and believe me, I feel your panic and desperation to help your child. We live in the Kansas City area. Our normal, funny, intelligent 8 year-old child developed OCD symptoms virtually overnight last June. We took him to therapists and eventually had him treated at children's mental health facility that is part of the Saint Luke's system bc his symptoms were so severe. THEY were the ones who knew to test for strep and had heard about PANDAS. However,they had no idea how to treat.

I can tell you you WILL NOT find support in this part of the Midwest. Our pediatrician was sympathetic, but clueless. He spoke to the infectious disease docs at Children's Mercy several times and they simply don't buy into the the theory and had no explanation for our son's continued elevated ASO levels even after infection has cleared up. We ended up flying to Chicago to see Dr. Miroslav Kovacovic. He has worked with several PANDAS patients and successfully treated our son. Our son had IVIG treatment in February and is almost 95% symptom free now. He is on preventative antiobiotics.

I hope this information helps you. Best of luck and prayers for you and your family.


Anonymous's picture

Preventive Medicin in P.A.N.D.A.

Following a discussion in Medscape(Forum for physician),I became aware,of this form of neuropsychiatric disorder.
Having read through this forum,I agree that PANDA is an Auto-Immune disorder that involves the brain at the Basal
Ganglia and its surrounding like the Hippocampus.
Started with a Strepotococcal infection(And any other
infection whatever)it activates initialy the Innate Immunity
later the Adaptive Immunity.The symptoms encountered in this
type of O.C.D. are just expression of continuing damage to the local dentrits(The only dividing cells in the C.N.S.)
Arresting damage can not be done with Antibiotics.It can be done with Nutrients that control the Toll-Like-Receptors,
located at the cell wall.(My invention:"The Foriegn
Molecules Theory")

Christie's picture

Dr. in Utah

My son had his first severe attack of PANDAS 1 1/2 yrs. ago. He developed severe OCD overnight. We went through 10 months of therapy for his OCD before I found out about PANDAS through the NIMH website. I mentioned it to my dr. and he was VERY skeptical. We continue to battle this illness each time someone in our house gets strep. I am looking for a dr. in Utah that recognizes PANDAS as a true illness if anyone could help that would be great!

Serendip Visitor's picture

Get in touch with Susan Swedo

Get in touch with Susan Swedo at the Mental Institute in Maryland. The last I checked with her office, your options are 1. Blood transfusion with a shunt in the neck to immediately get rid of the antibodies that are attacking the basil gangli and maybe the heart.
2. Zoloft or some med for anxiety. 3. Cognitive Behavior therapy helps a lot. (It is this part that is hard to find someone good) . You may have to travel out of state for a while. It is important to retrain the part of his brain that was damaged. 4. Low doses of daily penicillin is the most important think to prevent another episode if he gets exposed to it. Keep him away from anyone with strep. Have the school call if they are aware of strep. Also check for heart murmurs. The strep may attack the heart, also.

Anonymous's picture

I work with a child who has

I work with a child who has been diagnosed with P.A.N.D.A.S. However, this child was treated at Dartmouth Hitchcock Medical Center in New Hampshire and was able to get rid of the virus over time. I believe this child was diagnosed with P.A.N.D.A.S. by either Dr. Filiano or Dr. Moen who works at Dartmouth Hitchcock Medical Center. I know this is far from Utah, but I wanted to share this with you just so you know there are doctors out there who are more familiar with this virus and may be able to diagnose your son. I wish you the best of luck with everything!

Anonymous's picture


Thanks for your Tips- My son is completely recovered and on prophylactic antibiotics ( it will be 2 years this summer)
He still has a rare tic... but in general he is fine

thanks for the reply

Y's picture


Did you go on the PANDAS Foundation website and ask them for a referral?
Or go on the Savingsammy website - the author of the Child who caught OCD - Saving Sammy is spearheading a worldwide awareness campaign and may have doctors in Utah to help you. Dont give up go to a OCD specialist in a big city hospital for help.

Christie's picture

Found a Dr.

I went to and through this website was referred to a mom here in Utah who has had her daughter successfully treated for PANDAS by a local dr. Thank you so much for everyones help and concern.

Serendip Visitor's picture

Need a PANDAS dr in Utah

Hi I know this is an old thread, but I live in Utah and am desperate to find a good doctor who treats PANDAS. Could you give me the name of the doctor you found for your child? I would be extremely greatful!

Christie's picture

Dr. in Utah

I know how it feels to be desperate to get help for your child! Please contact me directly at and I can give you the name of the Dr. that is treating my son and give you some details of his journey of recovery.



Anonymous's picture

In search for a Dr.

I am interested in finding a Dr. near me in helping me help my child. I do belive with all my heart after reading everything available that I have access to on PANDAS, that it is very possible this is what it could be.
I have a precious 10 yr old son, he had strep in 2008. It did not completley clear up with the meds. We did not catch it immediatley because he was feeling fine (so I thought). One day about a week later he said my neck has been kinda sore, I felt of his glands and they were swollen and hard as rocks, the skin on his hands was peeling. Of course we went immediately to the Dr and he hadn't fully got over the strep and had to go on another round of antibiotics.
Immediatley after that is when I noticed the tics in him. First is was the rolling of the eyes. He now goes from one tic to the other, he calles them his habits. At times they are bad, at times he goes through periods where he does really well. I think he does worse if he is in an uncomfortable situation such as in a crowd; things of that nature.

Unfortunatley I live in Western Kentucky, a very small town near Paducah, Ky. I'm faily positive I won't find any Dr's in my immidiate location. I asked my ENT Dr. about it last week and he looked at me like I was crazy. Nashville, TN would be the largest city closest to me. Its about 1 1/2 hour drive. I realize I may have to do a little traveling, however I can't afford to travel to extreme, we are by no means wealthy people.

We could travel to Louisville, Nashville or TN surrounding areas.

Any help anyone can offer would be greatly appreciated.
Thank You,
Julie Knight

Kim's picture

In Search of GOOD Doctor

I live in central Kentucky and have had trouble finding doctors/specialists who take PANDAS seriously. My son began having symptoms at age 7 after having strep throat several times. He has had many diagnoses and on different medications, that really haven't worked. He is 19 now and was in therapy and on meds until he was 18 and then he quit everything. He still has many symptoms and I would like to find a doctor that will help him. Just wondering if you ever found any help for your child.

Sheri's picture

We live in Louisville. My 17

We live in Louisville. My 17 year old year old son is currently under the care of a psychologist and psychiatrist. Next time I visit with them I am going to press them to at least try the antibiotic option even though he has had this for many years. The drug he is on, and we have tried many, aren't helping very much. I will post when I have some results.

Kim's picture

Wanting to find good doctor for my son who is 19

I live about 50 miles south of Louisville. My 19 year old son began having symptoms of PANDAS when he was 7 after having strep throat several times. I took him to Louisville to see psychologists and psychiatrists. But no one really took the PANDAS seriously. He has been on several medications throughout the years and many diagnoses including bipolar (but he wasn't). He quit taking his meds when he was 18 and his symptoms have remained especially after having strep throat a few months ago. Do you know of any doctors that can help and take this seriously for adults that have suffered for years.

HomeschoolMom's picture

recommend great DrT in NJ(also helps with teens/young adults)

Highly recommend and forever thankful for Dr.Trifiletti and his staff in Ramsey NJ. He is known in PANDAS/PANS community as 'Dr.T' for help with children to young adults. He does office visits and/or phone consults, support group (also can attend online). A dedicated PANDAS/PANS expert, hence very busy practice, but he is wonderful doc, a truly kind man who knows his stuff and the research.

Kelly's picture

15 Year old with sudden onset of tics

Last summer when my son was 15 he came down with a sudden onset of strange tics and vocalizations. He also became very moody and depressed and when school began, his grades suffered. I initially took him to our family internist who recommended a phychiatrist. (Initially I thought it was a delayed reaction to his grandfather's suicide 2 years prior and/or a reaction to the recent breakup with a girlfriend.)We met with the phychiatrist and he recommended a nuerologist. We went to the nuerologist and all of his bloodwork came back normal and all of his muscle reaction was good. The symptoms actually seemed to disipate for awhile but have now come back stronger. I have researched PANDAS a little bit but it seems to be a pediatric condition. I am considering a trip back to the neurologist for further testing but am really not sure what to do next. I hate seeing my son having to deal with this, although he doesn't discuss it with me, I know he must be being teased at school. He has throat clearing vocalizations and body movements I can only describe as the "heebeejeebies". I don't want him to have to be put on anti-depressants if they are not necessary. If it is OCD...then why the sudden onset...wouldn't I have seen signs earlier and wouldn't it have been more gradual? Would appreciate any advice on the next course of action.

Stephanie LA's picture

Find a neuropsychiatrist or

Find a neuropsychiatrist or psychiatrist who treats PANDAS....when my daughter became ill in 2007, she was not diagnose until 9-10 months later, and a 3 week regiment of prophylactic antibiotics eliminated all of her tics, termors, OCD, Tourette's. She's now 11, and is perfectly fine. Best of luck to you.

MIKE's picture



I would see a FUNTIONAL Medical Doctor. Go to web sites for the society for funtional physicians etc. and they will refer you to one in your area. There are some in Houston. It very well could be PANDAS or a food allergy to gluten (glutamate), aspartate,etc. These free amino acids are flooded in our food supply. Also casein in dairy products.

Debbie's picture

Son diagnosed with post-streptococcal syndrome

My son is 17 and has always made good grades without much effort and has always been an excellent football and baseball player with a promising future of playing baseball in college. This year, his junior year, he has missed over 7 weeks of school since the beginning of school with fevers from 100 - 102 for 3 - 5 days at a time and other cold- and flu-like symptoms, horrible headaches, sore throat, etc. He was finally diagnosed with post-streptococcal syndrome by his Infectious Disease doctor. I was told good nutrition, rest when fatigued, and exercise when not is about all we can do. He is now facing summer school for three classes because of incompletes and was kicked out of baseball about 6 weeks ago. I thought his anger, depression, and other psychological issues were due to the stress of going from having so much to look forward to to feeling like there is no hope. But after reading about PANDAS, I believe the strep virus he had at some point - that wasn't correctly diagnosed - is the cause, especially since the changes in his mood started before he was kicked out of baseball. Has anyone else that has be diagnosed with PANDAS had the same issues with getting sick with fevers and constant illnesses? It happens about twice a month or more. I just know there is something terribly wrong with my's like he has been replaced with someone I don't know who is sick all the time.

Cathy's picture

sudden onset O.C.D. Andrew

I have a son , Andrew who is now almost 15. At the age of 7 he developed sudden onset O.C.D. He was a perfectly normal child, he has a twin sister, Katie, One morning, as I was taking them to school, Andrew refused to buckle his seat belt. He didn't want to touch it but reluctantly did so. When we arrived at the school about 5 minutes later, he started crying as he unbuckled his seatbelt. He kept retouching it over and over, every edge every surface, every where it had touched him. When he finally managed to get out of the car, he was dragging his backpack on the ground, dragging his feet, backstepping and doing all these weird things with his feet. He made it through the door and I left for home fully expecting a call from the school nurse any second telling me something was terribly wrong with Andrew. She never called. I called the school and they said Andrew had not been down to the nurse. I explained to them what had happened that morning. I thought that whatever he was doing that morning was over. WRONG!!! When he came home from school he could hardly walk up the sidewalk and get through the back door to the house. He walked through the house swinging a towel,tee shirt,etc. so it would have the last touch. Within a week he had spiraled so wildly out of control that I brought him to the emergency room. That was the beginning of our 8 year journey through Hell. I urge any of you who have not read "Saving Sammy" by Beth Alison Maloney, to get a copy as soon as you can. Reading about the struggle she had gone through with her son,Sammy, was like reading about my own struggle with Andrew. Andrew is now on a strong dose of antibiotics and has been since Nov. 2009 and he is slowly making progress. We had been to countless doctors and therapists, tried many psychiatric meds, with horrible results,

ann's picture


my granddaughter 12 years old, has been sneezing since december 2009. her parents has had her to many doctors, no results. they are at wits end for relief for her. they contacted the dr. in cleveland that treated the girl on the today show. he gave them hope... ordered many tests and some antibotics and another one. since taking new meds ,friday and sat. there is no change yet. we pray she will get better. the next step is IVIG or as another dr suggesred haldol.there are so many side effects to haldol. i hope they decide ,if necessary with the cleveland dr. and choose IVIG worried grandmother

KC Mom's picture

Looking for doctor in Kansas

Looking for doctor in Kansas City

I too have a son who was diagnosed with OCD when he was 10. He had several cases of strep and one day began having intrusive thoughts and was using hand gestures to help him get rid of the thoughts.

We are currently seeing a psychologist and psychiatrist. They have put him on Prozac which has helped. However, every time he gets sick, his OCD tendencies seem to come back stronger.

Have mentioned PANDAS to our pediatrician, psychologist and psychiatrist. All claim to not know enough about it. Would like to find a doctor willing to explore PANDAS more in depth.

Please let me know if you find a doctor in the Kansas City area who is reputable and willing to travel down a path less traveled to help these children.

Kari's picture

In Kansas too.

I wanted to contact you about your post. I wonder if you have found any help. I too am in Kansas and have not had much luck. I have found several of us in the KC or Kansas area posting on this site. If you all are reading. Let's set up a forum to talk and share our stories. We are all so close in proximity (at least in the same state) and, if your experience with this has been anything like mine, I am sure that you could use some support right now. Let's figure out a way to exchange info and we should get it set up.

Best regards, Kari