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.

 

References

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

MY PATIENT AND I THANK YOU FOR A VERY HELPFUL PAPER. DR. VTS

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

Comments

David's picture

Daughter with PANDAS

Hello, we live in Salt Lake City, UT and I have a daughter who is 17yrs and started having seizures last year for the first time and have continued now plus have tics. We need more information and I would love to get any additional information about this and how to treat it. She graduates from high school this year and plans on going to college in Houston, TX and we are not too sure now but hopes to find a doctor, support group ways to keep her safe, etc. Please contact me if you will . Thanks David,SLC-UT

Serendip Visitor Anne's picture

There is a wonderful DAN

There is a wonderful DAN doctor in Houston by the name of Arturo Volpe. We've worked with him on and off for almost 10 years. He's wnderful! Go to www.doctorvolpe.com for more info. Good luck to your daughter. Hope this helps!

Serendip Visitor    marilyn green's picture

PANDA OCD

Does anyone know of a doctor in Dallas, Texas area that specializes in PANDA OCD?

Serendip Visitor's picture

reply to Dallas, TX doc

Dr. Richard Jaeckle, MD is a psychiatrist on Walnut Hill in Dallas, TX. He is very familiar and treats children with PANDAS/strep. He has treated my anxiety and depression successfully with sublingual amino acids but he also administers regular prescriptions as well. It is up to the patient's choosing what they would like but I always prefer the natural route.

Mitzi j Erazo's picture

my son with pandas

My name is mitzi erazo and i will be try to share with you my son story but i am spanish, so ill try to write as clear possible for you all to understand me.My son has been diagnosed with pandas since 2008 and is realy hard when you see an austanding boy in school and see the diference after the diagnosis. This illness have been afected my son Janniel in school and his vehavior.After i notice as a mother my son changes ,I talk to the doctor because he was having a lots of headaches , throats infeccions,ocd and strange movements.Iam from Kissimme FL,so after severals test i ask for a neurologist to check my son.Then dr Davis in Orlando FL sent my son to a blod work and finaly he found the turetes level hight and the antibodies realy hight,the were in 1,092 this is verry hight.
Now I know what is happend to my son ,Janniel is 10 years old ,he use to be an oustanding in school now he is strouggling in school so I went to his school and he his in medical 504 program and with help he is doing well but is realy hard at home my son is suffering constantly "ocd " AND A lots of ticks.Sometimes he said to me "momy why I can control myself i dont understand why i have to bite my knuckles and i dont understand why I get so mad for little things". Janniel argue to much with me and his brother is hard to make him understand,he gets insecure a lots of time he make me check the hause ,to se is the door and windows are close he think some time that he is not supose to be in this world he scream sometimes when he get mad,is realy hard to see my son like this because he was a verry quiet and calm little boy. Thanks for listen to me
mitzi
is someone want it to help me
please e-mail me .

Kerrie Augustine's picture

Hi Mitzi, My son too sounds

Hi Mitzi,

My son too sounds like yours. His name is Nick, he is 16 years old. He was just recently diagnosed with PANDAS. He has severe OCD - extreme fear of urine. There is a doctor in FL that I've heard is really good.

Nick too was a really good student. He had all A's in 8th grade. That was the last year he attended school. He is now in the 10th grade, being home schooled by the state of MI and in struggeling each and every day. I DO feel your pain. It is awful to watch your child change and hurt so much. Has he been put on an antibiotic? Please write back if you have any questions. Check out Dr. Tayna Murphy in FL. Best wishes to you and your son.

Kerrie

Serendip Visitor Mitzi J Erazo's picture

Answer for Kerrie about Pandas

Hi Kerrie
This is Mitzi again, it`s been a little while since last time we wrote in here. I hope your son is doing better now. My son now is 11 and he still sufering tics and (OCD`s) desorder. I have news for you; Dr Ronald Davis his neurologist here in Orlando Fl, sent my son to Dr.Murphy in Rodman Research Center in, Stpetersburg Tampa because he fail third grade because he din`t pass the FCAT, due to the tics disorder. When they test my son, his ISO-Srtep-B test came back with 1,996 as a result. Dr. Davis told me that he neded more help because he though that he also had Tourette. I had some discussion with the Oceola County Board of Education about what happend to my son, and they desire to give my son some test again in third grade. He passed all test with high score so he was moved to fourth grade where he belonged. All these happend while he was with Dr. Murphy. She putted my son in a research, to test a madication call Abilify and while he was in that treatment he did great in shool, so he icrease his grade by focusing more in class, his tics and OCD`s where less than before the medication.That was last year by the months from April to June, then he passed to fifh grade. But now I feel like starting all over because since he begin his 5th grade he ISO- Strep-B levels are high again he does not madication because his insurance sent me a letter that said that the medication abilify is not aproved by the (FDA) for children of his age. The Health Insurance also said that "Criteria used make decision: That request could not be approved. The member`s age is 11 tears old. per the U.S. Food and Drug Administration(FDA) gudelines, Abilify is only aproved for the treatment of Schizophrenia only in those 13 years of age and older''(Staywell letter for my son Janniel). So naow I don`t know what to do.I will find the way to cure my sone. Mitzi

Lori's picture

OCD

Hi Mitzi,

My name is Lori, and I have been reading everyone's blog about what has been going on with their children. My son is 14 and suffering from tics and OCD for a few years now. My question to you is....did your son test positive for Group Strep B or Strep A? I ask this, b/c these are two totally different bacterial infections. I'm curious b/c I tested positive for Strep B, not Strep A (which causes Strep Throat). Strep B is found in a woman's vagina or rectum and can be passed on to her newborn with tragic outcomes. I just noticed that you mentioned your son tested positive for Strep B. Can you please elaborate, because now I'm really concerned that I may have passed Strep B onto my child and that it is not Strep A which causes PANDAS and OCD. Thank You.

Kelly Pyke's picture

Pandas

Hello, My daughter has pandas and I am seeking help and information of this condition. I was just told today that Pandas has not been recorded in children over 12 years of age, but i see your son has pandas at age 16. Would you mind sharing some information with me or even a letter to help me document this contraversy. The doctors want to treat her with therapy and ssri drugs. I am thinking that she should have ivig (intravenous immunoglobulin) Do you know of this treatment? If your son has this at 16 then my daughter may not grow out of it as the doctor suggested today. Please write back,

Mitzi j Erazo's picture

My respond to kerrie

Thank to respond me back i am sorry my English is so so but i will try . THanks for your answer,Tania im sorry about you too but you know what? God does not guive anything that human can resist i hope you understand.This is hard but moms like you and me make the diferense, because we are strng.Thanks for let it me know about Tania Murphy i am waiting for them, they allready callme for appoinment.I woul like to know if your son if with DR Murphy,i would like to know if they help you or anything that help me.Anyway there is no DR that attend PANDASA she is the one that deal with.I hope is working for you pls contact me Mitzi .see you soon

Sandra's picture

Young Daughter

You guys have got me worried I will be more vigilant

Serendip Visitor's picture

BIRMINGHAM, AL

DOES ANYONE KNOW OF ANY PANDAS DOCTORS IN ALABAMA, OR THE SOUTHEAST, IN GENERAL? We live in Birmingham, AL....anywhere nearby: Alabama, Georgia, Tennessee. PLEASE HELP!

Serendip Visitor's picture

Panda's Doctor in SE

We live in Birmingham, AL and have seen Dr. Daniel Kalb in Franklin, TN. I just read your post, b/c we are still in the early stages of all this. I hope you have found a doctor by now and if you did find one in Birmingham please post back.

michelle stovall's picture

info please

Hi. Not sure how old this post is. My son has been Dx with PANDAS n I need desperately to find someone closer to W KY. Cab u PLEASE email me @ ? Wanting info about Dr Kalb. Thank u

Serendip Visitor Melanie's picture

A PANDAS doc in Bham?

Did anyone ever find a PANDAS doctor in Birmingham or any other city in Alabama?

Serendip Visitor's picture

Beth Alison Maloney, the

Beth Alison Maloney, the author of Saving Sammy: the boy who caught OCD, has a list of doctors, on her Face Book discussions section, that many families have submitted to her. Also her website SavingSammy.net has many good resources. There's also the PANDAS RESOURCE NETWORK.

Serendip Visitor's picture

PANDAS Dr

I was just notified yesterday that my son might have PANDAS. He is 7 & I'm also looking for a doctor that specializes in it. I live in Enterprise.

Sheri's picture

The Probiotic Contributor

I was wondering what probiotics you are taking. My 18 yr. old son has seen improvement with prophylactic antibiotics but the cleanses and probiotics seem interesting to me.

fran Grippo's picture

Looking for PANDAS DR. IN NEW YORK OR CONN.

Hello Everyone:
Can anyone help me find a Doctor who treats Pandas in the New York OR CONN. area ?
I have a 22 year old son recently diagnosed with PANDAS. He has severe OCD and aggression. I would
really appreciate it if someone can help me.
Thanks, Fran

Lori's picture

PANDAS Specialist

Hello Fran...this e-mail may come to you a bit too late, but I haven't had to research PANDAS until recently due to my son's repeated bouts with Strep. He has been diagnosed with Tourette's by a neurologist, but I now think it may be PANDAS due to the nature of his symptoms (OCD plus Tics and moodiness along with some depression as well). I found a doctor in CT who specializes in treating children with PANDAS. In fact he is thinking of possibly opening up his own Infusion Center near his office to help children with this disease. He has cured many children. He's also been on The Today Show. When all other doctors failed, he was the only one to help diagnose and treat a little girl who had problems with excessive sneezing. Her mom found this doctor, and she is now cured. Apparently the sneezing was due to PANDAS. His name is Dr. Dennis Bouboulis in Darien, CT. I have an appointment scheduled for my son in February (there is a waiting list to see him). I hope by now you have found someone to help your son. If not, you should google this doctor, and see if he is someone you may be interested in bringing your son to. Good Luck to you and your son.....Lori

Serendip Visitor's picture

Pandas

I believe if you look for a research hospital in conn. they are having a study on PANDAS. I have a son who is possible to be diagnosed this month and they kinda mentioned in passing that there was a family that was doing the antibiotic treatments and they were in conn.
GOOD LUCK

Tanya's picture

PANDAS

Dr. Harvey Singer @ John Hopkins Pediatric Neurology in Baltimore MD. Fantastic Doctor with an abundance of knowledge and understanding of PANDAS and PITAND.

Serendip Visitor's picture

Harvey Singer told us that

Harvey Singer told us that PANDAS does not exist! I would NEVER tell anyone to go to him!! Try Dr Beth Lattimer in Bethesda

Meena's picture

PANDAS

Thank you for the suggestion of Dr. Lattimer. My pediatrician just gave me Dr. Singer's name, but warned me that he may convince me that PANDAS doesn't exist. I was hesitant, but desperate. I don't understand though how two people in need of the same information from the same doctor came out with polar results. don't want to waste my time or co-payment to be shot down. Thanks!

Serendip Visitor's picture

PANDAS doctors

Hi Fran--Google the "ACN Latitudes Forum PANDAS".

At the top of the page is a "helpful thread" where parents have listed doctors who have helped with PANDAS -- Dr. Schulman is in NY, though I do not know anything more about her and have not seen her. Schulman has some PANDAS videos on YOUTUBE, with more info. Best to you--

M Mages's picture

Help for PANDAS + Autism

Our eight year old son was diagnosed with Autism at 2.5 years. After trying every therapy known to man, some with wonderful results, he is currently fighting severe OCD and TICS. He tested positive for PANDAS 2 years ago with our DAN doctor. After rounds of anti-biotics, steroids and finally anti-inflammatory drugs he seemed to improve. We have had success with Acupuncture and were able to decrease his med.s for the PANDAS. And now we have has a TERRIBLE setback. He is tormented by fits of OCD and TICS. We spent yesterday at the hospital for labs etc. He is currently on Anti-biotics and steroids plus more anit-inflammatory med. in hopes of helping if this is truly a PANDAS episode.
Is IVIG the best option for fighting this?
Where is the best facility?
We are looking into a place called the Rothman Center in Tampa, FL for Neuropsychiatry.

suzie from new york's picture

? use of rifampin

our 10 year daughter has possible panda. she has a second strep titers done that was even higher then the first. she had a slight tic that went away with 3 weeks on amoxicylin. then came back before we tested her strep titers again. the tic seems to have gone. she is on augmentin. one doctor feels that we must put her for atleast four days on rifampin and the other doctor feels we should just keep her on the augmentin for 4 weeks. has anyone else had this conflict?

suzie from new york's picture

? use of rifampin

our daugther has possible pandas with elevated strep titer levels (second one much higher then first one- done 5 weeks apart). her glands are very swolen and she has a slight throat clearing tic that comes and goes. three weeks on amoxicillin seemed to get rid of tic but not titer level and tic seemed to return slightly. one doctor recommending augmentin for 4 weeks , while another feels we should stop augmentin after 10 day and give 4 day treatment of rifampin. the second dr. feels very strongly that without the rifampin the symptoms will return. does anyone have any experience with this drug or course of treatment. thank g-d our daughter is only showing traces of ocd thinking and anxiety for which we just started counseling. thanks

Serendip Visitor's picture

PANDAS/PITANDS and asd

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

Serendip Visitor's picture

I developed severe OCD after

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

Sandy's picture

Thank you so much for this

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

Jaci's picture

Trich

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

Sandy's picture

Strep and Trich

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

Theresa 's picture

Pandas

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

Stephanie LA's picture

Response to Mollybyday

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

Serendip Visitor's picture

Your daughters visit to Dr. Elia

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

Stephanie LA's picture

Dr. Elia @ CHOP

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

Lori's picture

PANDAS vs. Non-PANDAS

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

Linda's picture

Does anyone else find it

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

michele's picture

Ryan's parents

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

Robert's picture

Pandas

Michelle,
In response to your post, my son's tics started in Jan 09 after a strep infection. He was first treated in Children's Hospital in Pittsburgh. He was treated with a low dose of Hadol and upon increasing the dose he had a dyskinesia one night which immediately stopped the tic. He went symptom free for about 10 months and then after another strep infection he had his tonsils removed and about a month later the tic returned and lasted for about 5 months. We took him to Cleveland Clinic and he saw Dr. Erenberg. I tried him on several different antibiotics and Dr. Erenberg tried him on several different classes of drugs without relief. Then we titrated him back up on Hadol but the tics remained. Finally after two 2 day courses of ivig infusions 2 weeks apart, the tics gradually disappeared in about a two month period of time. We finally had our son back. He did well for 3 months and then the tic returned about 3 weeks ago. One thing we did do which I didn't realize we shouldn't was update his childhood immunizations. Whether this was the cause for the return is anybody's guess. I hate to think it was. During the time Ryan was tic free, he was on penvk 250mg two times a day. Since I am in the medical field, I have also tried him on Clindamycin and Azithromax. I really can't get an answer on what antibiotic or how much to put him on. Everything is hit or miss. Last Wednesday and Thursday, he did go through another 2 day course of ivig at Cleveland. If I see no resolution in 2 weeks, I would like to go with another course of it. I do know that the brand of ivig he had this time is different than last time and he is going through alot more severe headaches. Only time will tell. I don't know how the forum operates and if you can get my email but I would like to talk to you. My email address is rearcher1@att.net.
Bob

Robert's picture

Michelle, If you get this,

Michelle,
If you get this, reply to my email at rearcher1@att.net. Since I am in the medical field, I think he has been pretty willing to get my input. It has been only been 3 days since he had the repeat course of Ivig. It does take time to react. The first time he had it, I had to convince Dr. Erenberg to repeat it in 2 weeks. I do believe in my heart this is what brought he out of it before and hopefully will do it again. I can really sympathise with you. It is a real hell, both on the child, parents, and other sibblings who feel neglected. Let me know if you get the email. I would like to talk to you by phone if possible.

Keri Dickman's picture

Children's Mercy in KC

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

Serendip Visitor's picture

pandas dr

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

Linda's picture

Does anyone else have a

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

Sheila Trahan's picture

PANDAS Dr. help-across USA

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

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

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

Sheila

Susan Yates's picture

I'd like to get support from

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

TMom's picture

PANDAS

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

Stephanie LA's picture

Child with PANDAS

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

Serendip Visitor's picture

Son with tics

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

Regards,
Mrs. M

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