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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


Anonymous's picture


My four year old has suddenly developed OCD over a very short period of time in connection with a strep infection. We are devasted by his unusual behaviors and we are getting nowhere with our pediatrician or the children's hospital in our area. Does anyone know of any specialists (psychiatrist, infectious disease, etc.)in the central Ohio area who know how to treat this? We of course are willing to go anywhere to help him so any other suggestions outside the immediate area are also welcomed.

Michele's picture


I am in OH and having the same issues with finding Dr's in OH. Please contact me. I would love to talk. It sounds like we are living the same nightmare.

Robert's picture

12 year old son with PANDAS

Our son Ryan developed Pandas in January 2009. He is now suffering from his 3rd reocurrence. He has a loud, vocal seal bark tic. He has been treated with different antipyschotics and antibiotics to stop his tics. The first time it stopped to a reaction to Haldol. The second time it stopped as a result of two, two day courses of ivig therapy 2 weeks apart but it took it a while to go into remission. 3 months later the tics suddenly reappeared again after not having any for three months. His tics have been occuring for about 3 weeks now and we just had him go through another two day course of ivig therapy. We can only wait and see what happens. Like all parents with a child suffering from this, we are also going through a living hell and can only hope and pray that it ends. Ryan is being treated by Dr. Gerald Erenberg at the Cleveland Clinic. He has been excellent throughout all of this.

michele's picture

Hi Ryan's dad, What a

Hi Ryan's dad,
What a coincidence. We saw him for about seven years and got nowhere on the PANDAS. In fact he was a non believer and would only diagnose him as tourettes. We have not seen him in a year and a half. Does he also treat him with daily meds? Can we talk? . I have gotten nowhere on the PANDAS and he is in exacerbation again, Are you using daily antibiotics? This is like a nonending nightmare. I feel we are losing my son to this.

Cathy's picture

PANDAS related to mucous retention cyst in the sinus area?

I have a 16 year old son who has been treated for PANDAS for a year and a half. He recently had a CAT scan which indicated mucous retention cysts within the floor of the left maxillary sinus and one within the base of the septated sphenoid sinus. Has anyone ever heard of a connection between the two? My son also has very high ASO titers and we are considering a tonsilectomy in the near future. I'm interested in any information on the possible connection between the cysts and PANDAS (or the elevated ASO titers).

Gerry's picture

PANDAS related to mucous retention cyst

Hi Cathy,
Did you find anything out about this?

Anonymous's picture



Anonymous's picture


My 11 year old daughter has been dealing with anxiety for about a year now.She had strep throat last January and had a sudden onset of anxiety and separation anxiety following the illness.I'm sure it is PANDAS.Does anyone know of a doctor in the central PA area who treats this? My pediatrician doesn't seem to take it seriously.I really need some help!

Anonymous's picture

My daughter has had ocd

My daughter has had ocd since she was 6 years old,we went for counselling and meds,in about a year all better no more meds nor counselling.This last march she came down with strep.....all went obsessing over her toys could not play,crying ....a nightmare to say the least i never dreamed of this happening,back on meds,geodon,fluxotine,working so so some meds.really causing total i wonder has anybody gone through this??? how long does it take to recover its been almost 3 months now?? or is this the way it will be?? God i hope she will recover,thanks for all replies.

Regina's picture


My son has had PANDAS characteristics for almost 2 years and it has been misdiagnosed until recently. His pediatrician put him on antibiotics for 6 months and then thinks he will be fine. A few days after he started antibiotics, his tics almost completely disappeared. He had a great week. Yesterday, he started a lower dose of antibiotics and today he had several emotional meltdown, completely losing it, even hitting himself. The littlest things triggered these meltdowns. He has not done this before. What can I expect from the antibiotic treatment? What do you do when antibiotics are over? What are alternative treatments tried? Should he be on psychiatric meds too? Anyone know of a PANDAS expert? Any advice or direction would be greatly appreciated.

Thank you!

Doug's picture

4 year old daughter

HELP PLEASE! My wife and I are so confused and worried, our 4 year old daughter had a sore throat, then a few days later she was excessively worrying about Germs and then having lots of other fears like choking & real Bizarre thoughts.
I found a website on PANDAS and it fits my daughter to a tee. We had a throat culture done a week later and it was negative and she wasn't sick very long. (It didn't appear to be anything serious like strep, she had a slight fever but wasn't acting ill.) She is still having lots of fears & unrational worries & somedays are worse then others. We haven't had her blood levels tested to see if she was exposed to Strep. My question is do you think this is worth while and if they are elevated should we start antibiotic treatment. (Does this generally help? )

Dot's picture

I would get the blood work

I would get the blood work done. It is the antibodies to the strep that are the problem in PANDAS, not necessarily the strep itself. So if she has a negative culture, she still may have the antibodies that are causing the problems. Try to find a pediatric neurologist or pediatric psychiatrist.

KimA Sarasota's picture

PANDAS/ Mono *Pre-teen/ Teen OCD and Eating Disorder

I am SO relieved to find this forum. My (now 16) daughter has had a funky immune system all her life, starting shortly after she was born. No allergies, but strange reactions to viruses and normal immunizations. Constant ear infections. Began showing all sorts of OCD tendencies in her childhood but nothing major, just weird--like waking in the middle of the night, fully alert, and lining up all her toys throughout the house.

When she was 12 she caught mono and was out of school for 5 months, it was so bad. That was when her OCD symptoms started with a vengeance. She did a lot of skin picking. After the mono subsided she got better (somewhat) and stopped the skin picking but began hearing fuzzy noises, she couldn't explain them. Then, a year ago, she developed a sudden Eating Disorder. It happened right after she was sick with flu-like symptoms. She became anorexic. After 6 months SSRI's and therapy she got somewhat better but still had OCD thinking about her body (body dysmorphia).

Two months ago she went to the doctor for an ear infection. While she was there he looked at her throat and said it was red. Daughter said it didn't hurt at all but the doctor wanted to take a culture, just in case. Sure enough, turns out daughter had strep.

She was put on a round of Amoxiciilin followed by a round of Keflex.

After the course of both antibitoics my D's OCD/BDD/Eating disorder and face picking symotoms disappeared completely--within 48 hours!!! Not a trace, daughter completely normal!!! Her psychiatrist said she thinks it is PANDAS related (also research shows correlation with Mono infections, too) and from now on to keep an eye out for a return of the OCD thinking. If it becomes worse then I am to take her to the doctor for strep culture and blood test. Psychiatrist says she sees this happen all the time, and more research must be done in this much connection with autism, anxiety disorders, etc.

Isabel's picture

Thank you for sharing your

Thank you for sharing your story. It is so encouraging to hear that the antibiotics worked so well for your daughter! My son has PANDAS. The Dr. is 99% sure, but run tons of tests and we are going back in a couple of days to get the results...
Again, I am so encouraged by your story. Most articles out there say antiobiotics don't always do the trick, but I hope and pray the work for my son just like they did for your daughter.
Thank God for your doctor who checked things out too! Hope your daughter is still doing great... watch out for any symptons and go back to the doctor at the first sign of illness.

 Rex Coate's picture

I have had anxiety disorders

I have had anxiety disorders since I was nineteen years old. I am fifty seven now. I had a severe case of strep throat when I was eighteen. I had a temperature of 105 degrees. Would it be possible that the strep throat I had at eighteen started some type of reaction that has caused my anxiety disorders. As I recall, I started having severe anxiety problems after I had the strep throat at eighteen. I have had serious anxiety problems ever since. I have been to numerous psychiatrists and psychologists. I would certainly appreciate a response to this. Thank you

Anonymous's picture

PANDAS and later manifestations

A relative of mine was diagnosed with PANDAS about 10 years ago and was treated as a part of the original research. I am posting because after years of thinking that he was "cured" we discovered that he had been battling depression ever since, even though the OCD symptoms had dissapeared. It is unclear how directly this is related, but he does feel that the depression orginated with the PANDAS. If your child suffers from PANDAS, please do everything you can to maintain a dialogue with them and let them know the signs of depression so they can tell you if they feel at risk.

I hope this helps someone else protect their loved one from years of hiding mental illness.

Anonymous's picture


I too live in the Atlanta area and I am concerned that two of my children may suffer from PANDAS, however, I don't have a clue as to where to turn to find physcicians who are willing to recognize and treat them for this disorder. Does anyone have any references they might be willing to share? Particularly in the metro/southern part of the city..

Anonymous's picture


I live in the Middle Ga. area and my 11 year old son has been diagnosed with PANDAS in the last few months. He was actually diagnosed with Tourettes at the age of 7 and the last 2 years have almost been unbearable with OCD and tics so we have seen several different Drs. I suspected PANDAS last year and didn't pursue after our peditrician said,"to rare" so until the last Dr. we saw asked me if I had ever heard of it and I said yes. We did the blood work and now we are waiting to get the IVIG approved but our insurance has denied it and I have appealed their decision and we are waiting. If you have anything to share it would greatly appreciated.

Serendip Visitor's picture

To those in GA

Is there anyone in the Georgia area that has worked with a doctor that will treat PANDAS with IVIG? I feel like I have seen 90% of the doctors here for my son and they do little or nothing to help. I can't tell you how many times I have seen doctors who say they treat it. Then they waist our time asking the same questions over and over. They finally end with "Yes, I do believe your son has PANDAS. There is a study going on at the NIMH that you can try (which he was turned down for...he was not severe enough...I can't imagine it being much worse than his). He also needs CBT." That is all I ever get and it is not working. My insurance will pay for the IVIG. I just need to find a doctor who believes in it.
Please Help!

Diana 's picture

California - PANDAS 4 cases here near Stanford Univ.

Atlanta - I hope you will contact me. I am working with about 30 other parents now on solving this issue. My son is recently pretty much recovered from PANDAS thanks to the efforts of many doctors and friends and RESEARCH. I have found Azithromycin daily prophylaxis to arrest the most acute symptoms. He received a medical treatment that was helpful - IVIG. This is used in MANY autoimmune illnesses with good affects. It is expensive though. The onset must be VERY SUDDEN and EXTREME - either tics or ocd and extreme anxieties and/or other odd behaviors. The average age here is 7 yrs old and onset occurs immediately after strep infect. or 4 to 6 months afterwards.

Pamela Varady's picture

PANDAS twin boys

My 10 year old twin boys and their first cousin have PANDAS. We all live in Santa monica, Ca. We did several rounds of IVIG for each child and six months of antibiotics. We have good hours and bad hours. They still suffer from mood swings, reactivity, tics, mild inattention, some OCD, extreme difficulty handling dissapointments, fine motor changes,and a subtle decrease in math skils.

When you wrote that your son pretty much recovered I was relieved-- for you and for me, hoping we will eventually get the same good results. How many rounds of IVIG did you do for your son? What are the symptoms if any that you see now?
Do you think the type of antibiotic matters? We are using Keflex.
Have you tried any amino acids to treat specific symptoms or psychotropic medications?
{Ed note: We don't publish phone numbers or email addresses for privacy concerns.}
PLEASE call me. You seem to be the most knowledgable Mom on this list.


MJ's picture


Wow, I am 60 years old and finally going to get help for mild OCD and tics, which started when I was about 4 and I just realized I had terrible strep in those years - I'm surprised to see the strep and ocd/tics are related - I, too, live in Santa Monica, now I am wondering what kind of doctor I should see? anyone out there in Santa Monica, can I get a referral? thanks, MJ

Sherry's picture


My daughter is VERY concerned about one of her twins possibly having Pandas. I also live in Santa Monica. Any information you can share including physicians who might be able to diagnose him would be most appreciated! Please contact me asap. Thank you so much, Sherry

Sean's picture

Vocal Tics maybe related to PANDAS

WE HAVE TRIED EVERYTHING from diet to excercises to chiropractic and now we are looking into the Brain Balance Center in Suwanee as we saw an amazing article in the Atlanta Magazine. which deals mainly with Autism but also my son's issues.

I came across your post after having a tough vocal day with our 6 year old son who is just an amazing boy all around! He really gets going when TV or video games are on with throat clearing and a ENNNNN ENNNNN noise so today, being a rare inside snow day, we heard it non stop! We are very open with him about it and let him know it's ok to make the noises we don't mind but if they are bothering him to let us know and we will go do something to clear his mind etc...

I can tell you that he really seems to have issues when we have viruses among the five of us (he has two sisters 5 and 8). Everytime we are in a waxing period my wife goes to get strep test and they are positive. He gets on the pink penicillin antibiotic we always see a waning almost immediately (other than when the Sony DS or TV's are involved). Anyway, our Doctor here in the John's Creek area just gives us a blank stare when mentioning PANDAS and doesn't agree. We would like to look into it some more but are just so worn out and defeated all the time really need some direction. After seeing your post is gave me some hope.
Please let me know who you see in the Alanta area or who you recommend in the Atlanta area ;-)
Kinser's Dad---- Sean

Anonymous's picture


California, I see you say that your son is pretty much recovered. Any info you can provide would be great. My son had strep four weeks ago and had sudden onset of vocal, followed by motor tics. We have had to shop around for a Dr. The specialists seemed the least help. One put him on Tenex, made it worse. Our current Dr tried klonapin, to see if it had the same or different effect than the Tenex, it again made it worse. We are three days into a five day steroid burst and have seen no improvement as of yet. Since I am seeing no decline in his tics I am very worried. Our current Dr. says this is related to an older disorder-sydenham's chorea. To just have a doctor who knew that much was a relief. But, we are still just trying to find something to help. The Dr. is still very much hopeful that the tics will subside at the 6-8 week mark, as he had seen years ago with the other disorder, but I have not seen any improvement yet, and worry that it won't be that easy. He is already on a daily antibiotic. As a side note, there is no history of tics anywhere in the family. Upon doing more research the farther we get into this, I have just started seeing mention of trichotellomania being related as well. I have trich, started around the same age, 7. I'm starting to wonder if I may have been a PANDAS kid too...still have the trich, it never went away....Thanks for any info! Oh, and BTW I'm in Michigan...

Regina's picture

Michigan submitted 12/26/08

My son is on Amoxicillan and Clavulanate and that seems to be the only antibiotic that helps. However, I'm not sure it isn't just masking the symptoms or tics.

Regina's picture


My son started showing characteristics of PANDAS 1 and 1/2 years ago, but no one knew what it was and symptoms were misdiagnosed. He went on antibiotics a little over one week ago. After about two days his tics almost completely went away. He had a great week and tics were 99% gone. Yesterday he started lower dose of different antibiotic and today he started having emotional meltdowns (which he had not done before), even hitting himself, emotionally out of control, sobbing, etc. The littlest thing would cause it to happen again. His pediatrician wants him on antibiotics for 6 months and then thinks he will be fine. I don't know what to do, I need more information on disorder. Does he need psychiatric meds too? Can you give me some good websites to look at or any advice? What is IVIG? Would greatly appreciate any information or direction.

Thank you.

Pamela Varady's picture

twin boys with PANDAS and their first cousin Dx PANDAS

My 10 yr. boys are on augmetim and one boy had two rounds of IVIG, and while he is much improved he still has angry outburts and eye tics. His twin brother was more recently diagnosed. We just finished a steroid burst and sadly have not seen improvement. (Have you heard that a five day course of steroids followed by recovery would indicate that IVIG would be affective?) I will go ahead anyway with IVIG since it appeared to help my other son.

My boys each woke up one day I even know the exact time with extrmee tics adn mood disorders. They were very well adjusted kidds, friendly, social adn kind before PANDAS. I believe that I have one of my sons back adn now I want teh other one back to. I am so scared though since athe steroids did not seem to make a dent that the IVIG may not be useful this time.

I also read somewhere that even if your child responds well to the IVIG that you need to do IVIG every six months. Is this true? What about plasma Exchange? Do yo know who does this for PANDAS? Did yo consider it yourself? Any info. is greatly appreciated.

Anonymous's picture

I am the mother of an 8year

I am the mother of an 8year old boy diagnosed with PANDAS.
I have found lots of very usefull information and support at the online discussion forum at ACN - here :
Best regards -

Nicole's picture

PANDAS at 3 yrs old in Atlanta

We currently have our daughter's PANDAS under control! We were lucky and caught it very early but I am fearful of the future. Anytime our daughter is sick, tired or stressed we see the OCD kicking in again. I can tell you 4 days before the tics occur and when we need to jump on antibiotics. We have kept her immune system in check and healthy, we have stopped taking her to the inflatable jumpy places or similar breeding grounds for germs. We carry antibacterial wipes and wash our hands much more frequently. We cook at home much more! She is on vitamins and anything else we find to boost her immune system. We try and save antibiotics for when we truly need them!!! We took her out of school for a year and she just started back 2 weeks ago with nothing but sniffles. Her older sister came home sick the first day of school with strep but no one else in the house got it!!!

With PANDAS being part of the Autism spectrum disorders, I have started to read more on Autism since there is not much on PANDAS. I find a good deal of correlations and some things in my daughters early years which could be indicators for her current disorder. There needs to be more research on PANDAS not just with the older children with more severe cases but also for the younger children who still have a lot of years before puberty. Too much time for my daughter's condition to worsen. There is a need for immune system testing to help "predict" and "prepare" for these types of disorders!

Feel free to contact me...I would love to hear from other PANDAS parents!

Karen's picture

Dr. for Pandas in Atlanta?

I am not sure if my son has Pandas...but he had Scarlet Fever on My 15th and then on July 15 he had full blow OCD. Do you know of any doctors that treat for Pandas in Atlanta. My son't pediatrician does not believe in it:( I have been looking everywhere.
Thank you,

cindy's picture

Dear Nicole Would you please

Dear Nicole
Would you please let me know the doctor who diagnosed your child and the doctor currently treating her? I live in North Atlanta and have had issues finding someone who specializes in this. She was originally thought to have a mild form of autism, then was told it was OCD. I don't know if it is PANDAs but because strep has run rampant in our house, I am thinking she needs to be checked for this.
Any help or direction is greatly appreciated!

Anonymous's picture

Hi, I was wonderng if you

Hi, I was wonderng if you could refer me to your pediatrician or whomever treated your children. I am also in the Atlanta area and I've had a hard time finding anynone who will recognize PANDAS with merit! Thanks.

Anonymous's picture

Nicole -- PANDAS doc in Atlanta?

Just read these posts. Nicole, if you see this, could you share the name of your doctor in Atlanta? I have a son with PANDAS characteristics but would like to go to a doctor who has treated it before. Thanks!

ashley - new to pandas's picture

PANDAS doc in Atlanta

I read a few posts from a while back of people in the Atlanta are who had some docs familiar with PANDAS. My son's tests just came back positive indicating probably PANDAS and our doc is a believer but not sure what to do next. We live just north of Atlanta. Anyone who knows of something in the Atlanta area who is familiar with treating PANDAS - - please let me know.

Anonymous's picture

I have to say, it is about

I have to say, it is about time that the public is being made aware of this. I am 24 years of age. I went and tested for this disorder when I 13, about 11 years ago. I was also diagnosed with "trich" at the age of 11.

I had and still do suffer from Strep Throat atleast 2 times a year, and I can tell you that I notice the difference in my behaviors. The key is start the antibiotics right away, DO NOT WAIT! Also, I take them longer than the amount of time required to sure the strep throat so that I can be sure.

My 8 yo Son's picture

Will it go away

My son was 6 when he had a series of strep infections. OCD symptoms did not start until 3-4 months after the last infection. The OCD comes and goes seemingly depending on stress levels. (We've dealt with this with therapy.) Last year he was doing well and then he woke up one morning with sudden fears again and so had him tested and put on antibiotics. (He had no active case of strep.) He did better after the antibiotics and his titer level went down which seemed to prove that he has Pandas. He hasn't had an active case of strep in 2.5 years. My question is will the OCD go away?

Nicole's picture

My understanding is that

My understanding is that with each episode our children will only recover a small step or two each time. Once they reach puberty our children will remain the same throughout their adult life without fear of the disorder worsening. It was explained to me as a scale of 0-10, with 10 being worst case and 0 best case (non-existent issues). When our children get sick their problems can worsen depending on how sick they are/get and how quickly they recover. Every time they move up the scale they can/will recover 1-2 steps back.

Anonymous's picture

she prob has Pandas. Get

she prob has Pandas. Get her Titters checked to confirm.

Maura Heckmann's picture

My 11yo son

Just like the previous posts- I too believe in PANDAS as a valid clinical diagnosis- I am a pediatric nurse practitioner and my son changed overnight the night of june 27th 2008. He had never had any issues with OCD or any psychiatric diagnosis-- he awoke at his friends house , vomited and called us- stayed the night but the next day came home vomited and c/o a sore throat. His brand new obsessions have been chemical related thus making medication administration impossible-- he also fears contaminants like soap or toothpaste ( not easy to live with) this has been the worst month of our lives-
We can't get a strep culture or blood to test( too traumatic) causes full blown panic-
I need to find a neurologist in the boston area ( or anywhere in the northeast) -- Has anyone found an immunologist with experience in this area??
Please help

Anonymous's picture


We're in your area. My daughter has full blown case of PANDAS. Trying to get help through Children's Hospital in Boston. Feel free to email me and I'll let you know what I know.


Beth Maloney's picture

Mass General not Children's

I found no help at Children's. Instead, see Dr. Daniel Geller at Massachusetts General. My child is fully recovered. Our story is being told in Saving Sammy: Curing the Boy Who Caught OCD that will be published by Random House in Sept '09. It details what we went through and provides a roadmap for any doctor willing to recognize and treat this disorder. See

Anonymous's picture

Question about PANDAS


I read your post (of August 2008) about your daughter and PANDAS. My 8 year old son probably has PANDAS, he took antibiotics 2 times and they helped. Now his tics are increasing again though he has had no strep in recent weeks.

I was wondering what your experience was with your daughter as I am trying to determine what to do next. I am emotionally exhausted from the ups and downs of this disease.

Thank you for any advice you may offer,

Lisa Byrne's picture


Saw your post re: PANDAS we are in the Boston area and are desperate to find someone willing to diagnose and treat for PANDAS for our 12 year old daughter. What can you tell me about this? We have been through hell and no one will listen or even believes the PANDAS theory.

Mariesa Estes's picture

My 9 yr old daughter

I am a pediatric RN, I work with kids premautre babies all day long, I have been thrown a curve ball on 7/2/08 about 1130 p.m. my daughter and I was about to go to bed, she started shaking her head several times and I told her to stop so I could fall asleep, several min. went by and she cont. to do this I told her to stop again and she yelled at me "I CANT", I started watching her with out her knowing it and realized she was not doing this on her own. I started talkin to her and having her go to her room to get a book thinking if I got her mind off of it that it would stop, but it did not. this lasted for about 45 min. I had her do some breathing tech. and she fell asleep, I thought it was over. She awoke on 7/3/08 and she told me she felt better and I went to work. I called several times that morning and she said she was okay, but by the afternoon, she was calling me saying she could not get her head to stop shaking and all she wanted to do was play! I felt like my world was coming to an end, as a nurse all kinds of stuff runs through your head about what it could be and of course its always the worst stuff! She was able to see her peds in the afternoon and after all the assessments they finaly tested her for strep, it came back positive! The peds consulted with the neuro. and my daughter was given an antibiotics, Clonidine, and Diazepam. within 12 hours of starting the medications I have seen a huge change in her tic, less movement and she is resting. Does anyone have any advise for me, I realy just want to know if the tics will stop once we clear up the strep. I cant believe that one min. she was fine and the next min. she was not!!!!

Nicole's picture

Similar onset and the tics

Similar onset and the tics stopped after 2 weeks with only amoxicillan! We have been dealing this since Halloween last year, pleas feel free to contact me.

Nick's picture

Not recognized as a child but diagnosed as adult (my brother)


Do you know of any cases where someone was not diagnosed as a child, but later diagnosed as an adult. My brother realized after watching the movie Matchstick Men that he had OCD. He was 27 at the time. In watching home movies from childhood we can see that he had his facial tics way back when, so its possible it came from strep. Are there ways as an adult to determine if strep is in fact still in the body? Any help would be greatly appreciated.



Anonymous's picture

my daughter

My daughter has had ocd since she was 6 years old,we went for counselling and meds,in about a year all better no more meds nor counselling.This last march she came down with strep.....all went obsessing over her toys could not play,crying ....a nightmare to say the least i never dreamed of this happening,back on meds,geodon,fluxotine,working so so some meds.really causing total i wonder has anybody gone through this??? how long does it take to recover its been almost 3 months now?? or is this the way it will be?? God i hope she will recover,thanks for all replies.

scholarlymama's picture


I'm a single mom of 2 and my youngest, who is nine years old has had PANDAS since last fall, and it has been a nightmare for all of us. My daughter had a sore throat last fall, and when I called her pediatrician, the nurses refused to have her tested for strep. It turns out she did have a strep infection. Within weeks, my previously healthy daughter was displaying signs of OCD, tics, tremors, and seizures. Emergency room docs declined to help, because she was not a trauma case. Her pediatrician was clueless, so I insisted that she be referred to a pediatric neurologist at Hershey Medical Center. The first neurologist, some old dinosaur who was weeks from retiring, accused me of poisoning my daughter, then accused my daughter of faking her symptoms. After he retired, another neurologist at the same practice dragged his feet. I found out more info on her illness via the WEb than I did from him. All of her ASO titers since November came back positive for strep, but the docs refused to give her antibiotics, claiming they were false positives.

In January, she had to be hospitalized due to the seizures, and she was finally given an antibiotic. Her condition did show improvement, but she kept having reoccurrences of strep plus a UTI (urinary tract infection). Again, she received antibiotics, and she improved and was virtually symptom free for about 6-7 weeks.

A few weeks ago, she had a nasty stomach virus, and now the seizures/tics/tremors are back with a vengeance. Her neurologist, pediatrician, and psychologist are all playing pass the buck, and now I'm looking for a pediatric neuropsychiatrist that believes that PANDAS exists, and is willing to help my daughter. I live in Pennsylvania, but I'm willing to travel to Hell itself if it means getting help for my child. If anyone out there knows of a physician who specializes in PANDAS, please let me know. Thank you.

Trudy's picture


I live in the Philadelphia area, and there is a doctor here that does treat it, at least in part. Also, there is a doctor in Chicago, and we are seeing one in NJ (but I'm not thrilled with him.) There is also a Mom in CA who is gathering together a list of all cases she can identify (I can give you her email if you contact me), and she is collecting this for a study at Yale University, as well as giving additional information about doctors. Contact me, and I will be happy to give you the information.