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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.

 

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

Wendy's picture

PANDAS

I would love this information regarding the Yale study thank you!

Wendyjambro@hotmail.com

another mom's picture

Doctor in Chicago

Do you know of a doctor in Chicago who is familiar with PANDAS and has worked effectively with previous patients? Also I would be interested in getting any information about PANDAS doctors that the mom in CA is gathering.

EAMom's picture

Chicago Dr./Diana Pohlman

Dr. Kovacevic in Chicago has probably treated more PANDAS patients than any other doctor in the country. He is the real deal. http://www.webpediatrics.com/pandas.html

Feel free to contact Diana Pohlman (the mom in CA working with the Yale docs) personally: pohlmandiana@yahoo.com

Also, if you have questions about PANDAS there are lots of PANDAS moms/dads that will help you out at www.latitudes.org/forums

Sue's picture

Name of Dr. in Phila. area

My high school age daughter has been diagnosed with a Non-Verbal Learning Disability (part of the autism spectrum family of disorders). I have always noticed an increase in her OCD/autistic behaviors when she had "a sore throat." When she was young, she had either a sinus infection, ear infection and/or throat infection [strep most times], almost every other month. Her tonsils were finally removed when she was 14. The ear infections have nearly stopped, but the throat infections still occur [strep]. When she is getting sick, she becomes very anxious, angry, tics, sleeps all the time, defiant, etc. We have always attributed it to her mild autism. Now, we are wondering if the PANDA syndrome is the key cause of everything. Please provide me with the name of the doctor in the Phila. area (we live in the Phila. suburbs.)!

Thank you!

Beth Maloney's picture

Doctor in Philadelphia

Dr Catherine Nicolaides, Developmental Pediatrics, Marlton, New Jersey. She cured my son. Our story is told in Saving Sammy: Curing the Boy Who Caught OCD being released by Random House on September 8, 2008. See www.savingsammy.net

Sue's picture

Pandas

Hi,

I just started with an MD on Long Island (he may have an office in NYC also) Dr. Chris Calapai for my son who is 6 with extreme anxiety and fears almost OCD. I am just figuring this Pandas thing out. Anyway he treats homeopathically and we just started on the treatment. If you want I can let you know how it is going. He made the strep connection not his pediatrician. Very frustrating. My name is Sue. If you email me back I can let you know how it is going. Sue

Joe Stern's picture

About panda

Hi One of my kids have panda and would like to know your results of the treatment naturally.

Julie Stowell's picture

Homeopathic Strep

Hi Sue,
Our PANDAS doctor has suggested our son take a homeopathic medicine for Strep. She says she hardly ever does IVIg anymore because of it. I'm afraid to try it because it would be exposing him to strep again. Is that correct? Have you tried this medicine? Do you know if there are any studies to support this treatment? Julie

Sue's picture

PANDAS

Hi Sue,
I know it's been awhile since you posted but I'm wondering if you have had any luck with your son using homeopathy. Are you still seeing Dr. Calapai?

Thanks so much.

Sue

Michele's picture

PANDAS

Hi Sue,

I read your entry. I also live on LI and my son has ADHD and OCD. We had his tonsils removed over a year ago. Since then he has had two rounds of strep throat and I've been seeing a pattern that when he has the strep, his OCD behavior get worse and he starts this snorting tic. Have you had any luck with Dr. Calapai? Where is he located on Long Island? I appreciate any guidance you can give me. Thanks. Michele

Anonymous's picture

pandas

Can you let me know how the homeopathic treatment is going?

mary's picture

pandas

Hi Sue

I saw your post regarding pandas. I live in NY in Queens and have a 5 year old son with pandas. I was wondering what doctor you use and how he has helped you. I would appreciate any input you have.

Thanks
Mary

Cheryl's picture

Pandas

Hi Sue,

I read your email & I live in Long Island and have been for two years trying to figure out what is going on with my now 6 year old son. I would like to know what your son is being treated with. My son was diagnoised with ADHD & OCD and we just started treating him with meds about 3 months ago. I am still so nervous that I'm not doing the right thing. Last year when we went to the neurologist he had blood work done and his ASO titers were 478. No body was concerned and said that he was a carrier for strep throat. I had done my own research and found PANDAS and my son showed all of the signs but the doctors didn't know about this and said this was not it. We did not use medication for the ADHD & OCD because I just felt he was to young. Until, three months ago when the symtoms got worse & i can never figure out why some weeks are great and others are just so bad. He was unable to focus at school and I just felt maybe we should try the medications. So that is what I did. He started having headaches and frequent urination. I couldn't believe how much he kept going and he said he kept feeling like he had to go. I took him to the peditrican to make sure he didn't have an infection and also mentioned the headaches. She said no infections and to mention to the neurologist about the headaches. Anyway, I went back to the neurologist to go over how the last three months were on the medications and we did see a change but not a huge one. The anxiety was a little better but still had weird behaviors. She did some bloodwork and I told her about PANDAS again and she said we would retest the ASO Titers. Well, I received a phone call yesterday that the ASO Titers were now at 1178. I'm not sure what to do. They do not know anything about PANDAS and I feel that this is what my son has and I'm not sure if I'm giving him the right medications. He has not been on any antibodotic and should he be? I've been struggling with this for two years and it is very frustrating. I would love to try a new approach and I saw that you lived in Long Island and knew of a doctor. I also live in LI. If you have any advise, I would love to hear it. Thanks for listening.

Cheryl

Serendip Visitor's picture

Pandas

Did you ever find a doctor on the Island to help? We found one in NJ.I am looking for one closer.

Nicole's picture

Find a new doctor!!! We

Find a new doctor!!! We have been lucky with ours but we dumped the "best" children's neurologist in Atlanta because they did not agree with this diagnosis and now we have it under control for the time being. You have to have someone who believes in you, your instincts count! Stand up for your son and what you think is going on! Good Luck!!!

laurac's picture

Hello, Could you pass on the

Hello,
Could you pass on the name of the doctor you are using? I hope your child is going well.

Thank you,
Laura

Anonymous's picture

Please let me know what

Please let me know what Doctor you are seeing as my daughter is having some ocd issues after being diagnosed with strep this past Tuesday it just came out of know where one day she was fine the next she is having bad thoughts and counting all the time. Thanks for any info you may can give me.

Sean's picture

Tic Disorder? PANDAS? Tourettes? HELP

I accidentally replied to CALIFORNIA and I hope he/she can help too but Nicole, can you let us know who you see in the Atlanta area? I was born and raised in Atlanta and now reside in Suwanee/John's Creek area.

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. http://www.bbcenters.org/ 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 ;-)
THANKS!!
Kinser's Dad---- Sean

craig smith's picture

Who is your doctor in Atlanta

We are just north of you in Gainesville and were referred to a neuologist who is referring us back to a infectious person.

Anonymous's picture

Who is your current neurologist?

Just wondering.... who is your current ped. neurologist in the Atlanta area?
My son is 9 years old and has had PANDAS symptoms for almost 7 months now.
We went to our first neurologist appointment yesterday with Dr. Gerald Silverboard who is "on the fence" regarding PANDAS. Most of the other neurologist we tried to get into did not have any appointments for months out.
Thanks for your help... appreciate it.

Anonymous's picture

Hi....I also live in

Hi....I also live in Pennsylvania and am dealing with PANDAS in my two boys. What part of PA do you live in?

michele's picture

PANDAS, OCD, ADHD

My son has been having PANDAS episodes for five years off and on from exposure to strep and after he had immunizations. He gets tics, obsessions, compulsions, attention issues, emotional liability, and fears. His fine and gross motor skills are delayed. We are in occupational therapy for hndwriting and body strengthing. We are currently treating him with daily antibiotic therapy Omnicef, and Abilify for the emotional mood swings. This is helping him. He has not gotten an episode in several months. His tics are much improved as is his attention and emotional behavior issues. He still is scared of things and gets stuck on ideas but he is easier to get over things that don't go his way. I think he is on the road to recovery. It has taken alot of Dr's and time but he is slowly improving. Has anyone found a permanant cure? What is it? I wonder if he will need these medicines forever? He is only six. I wonder what his long term prognosis will be? How will these meds affect him in the long run?

Sheri's picture

PANDAS and OCD

I have a 15 year old son with OCD. Finally, our third psychologist has put credence to the PANDAS theory siting that one of her patients was cured from OCD by way of PANDAS. My son, daughter, and I are strep carriers. If there is a strep carrier in your family that might explain the frequency of infections. I am seriously considering having my kid's and my tonsils removed. My thoughts are that if we remove the tonsils, we remove the strep and hopefully the OCD with it.

Samantha's picture

tonsils

Hi, we are dealing with pandas again, after 6months of recovery. We are awaitng the titer blood test result. We had her tonsils taken out in in April. She has not been sick a day since. But here we are again in Pandas hell. My doctor has put her on amoxicillin. But looks like I am going to have to see who else is an expert in the area. If you kids need their tonsils out, large, snoring etc and they get tonsilitis..then otherwise I would say it does not help. What do you do if you are the carrier? I would ask a doctor though. Goodluck.

Ronnie Morgan's picture

PANDAS

Hi I have just read your comment, my daughter suffers from OCD, anxiety disorder and depression she is 6 yrs old. In Dec 2007 at 4yrs old she had her tonsils removed, because of the constant infections and disturbing symptoms. Unfortunately Strep is a separate infection and has plagued her ever since the removal of her tonsils... I have had my tonsils removed also as I am a Strep carrier. This was not the answer for my family. Let me know if you have made a decision, or how you are going

Nancy's picture

PANDAS

I have 2 children with OCD symptoms that come and go. I notice that whenever they get any virus the OCD symptoms and tics seem to increase dramatically. It doesn't have to be strep. Has anyone else had any of these experiences?

Nancy

Ellyn's picture

panda's

I have an 18 year old who has regressed in age but we are not sure why...could he be a candidate for PANDAS or is he too young?
Sincerely,
Ellyn

Joni's picture

Daughter with sudden onset of OCD and anxiety

Hi! I am hoping this could be the explanation of why my fourth daughter at the age of 5 suddenly became obssessed with her stomach hurting or feeling funny and became anxiety ridden. I can name the time of day this happened as we were on a family trip and she just all of a sudden started crying that her stomach hurt and she did not want to be touched. She would not even let us touch the hotel bed she was laying on. Her pediatrician thought she might have a strept infection in her intestines due to her complaining. But nothing was ever really done at that point. She was put on antibiotics and we just dealt with the ocd and anxiety as a separate issue. We have watched her over the years gain weight to a healthy level and then the obsessing comes back and she drops the weight again and can't function normally. We were a family that was plague with strept all the time. She is now almost fifteen and we will think we have this thing kicked and then out of nowhere it will come back with a vengenence. She has currently had to withdraw from High School and has lost fifteen pounds and was under weight already. We have tried medicine which helps but never makes her better completely. We have also tried natural supplements too. I have noticed that everytime it comes on, her glands in her neck area are very swollen. She has had strept infections and has had mono twice over the years. If anyone can tell me what to do to determine if pandas is what we are dealing with and what kind of testing needs to be done, I would greatly appreciate it. Thanks you for writing this article so the normal parent can understand pandas and be able to help their child. It is hard to watch a beautiful teenager be a prisoner to this health issue and miss out on so many good years.

Anonymous's picture

PANDAS

I need guidance. . .last year my son, now age 7, had strep 9 times. Despite my questioning the Doctors, and the research I did regarding his ADHD and tic disorders, I never heard of PANDAS. I just received a call from his Dr confirming he has strep again, but he has absolutely no symptoms. the test was done as a routine check at the E.N.T
is it possible that this disorder has caused my sons Tic disorder? Could it have been prevented by removing his tonsils last year? is the damage permanent? should I remove his tonsils? And lastly, what kind of doctor should we be seing about this? we have a neurologist, E.N.T, and a regular pediatrician.

thank you!!!
anne

Mariesa Estes's picture

questions

Hi, my daughter is nine and on 7/3/08 she has been dx with possible pandas, like you, no signs of strep, no sore throat no fever, playing, eating, acting normal. she started a tic with jerking of the head around 1130 7/2/08. she went from totaly fine to on three medications in one day. have you recieved any answers to your questions?? if so could you please write back and let me know what they are because they are the same questions i have. will the tics stop after the antibiotic are completed, are will she have to remain on her medications? thank you.

alexis's picture

I was diagnosed with PANDAS

I was diagnosed with PANDAS almost nine yrs ago. I was ten. By the time i was properly diagnosed at the Houston pediatric hospital, and determined i wasn't crazy, i had been sick for six months. I was not affected by personality swings or ocd, however, i had severe jerking. The jerks do not necessarily go away with antibiotics. In fact, the medications side affects they put me on were worse than just dealing with the disorder. For me, time was the only cure (about nine months). And it all really depends on the individual. So, if the medications are showing no sign of improving her condition, chances are time may be the answer. However, they know so much more about PANDAS now than in my situation. Since then I only had one flare up (ab a two week span). If there is an outbreak in your area, starting her on antibiotics to prevent infection is a must. Hope this helps! Hang in there!

Sheri's picture

PANDAS and OCD

I have a 15 year old son with OCD. We, too, have been plagued with Strep. It has been suggested that my son, daughter, and I are strep carriers. If someone in your family is a carrier, that might explain the frequency of the infections. My children have tested positive for strep with no symptoms. I have mentioned PANDAS to two of my son's previous psychologists both had no knowledge of it. Our current psychologist is the first person I've met who has lent any credence to the PANDAS theory, siting that one of her patients was cured from it. She says there is a practitioner is here in town and hopefully today she will have more information about that. In the mean time, I believe that having the tonsils removed may be the answer for us. Everyone I know who has had them removed has never had another strep infection. I have long considered having mine removed though for someone my age it would be a difficult recovery.

Billie's picture

pandas

I am free to talk to anyone about pandas. My son is 11 and was diagnosed 8 months ago. It has been horrible!! Contact me anytime

Wendy's picture

PANDA

My daughter is 7yrs. old and I have been trying to find a Doctor in the Atlanta are that specializes in PANDAS. Can anyone help me? I'm not even sure what kind of doctor deals with this. I feel so helpless and desperate. Her ped. doesn't know anything about PANDAS either. Thank you!

teresa's picture

pandas

my son is 9 years old-- i feel he may have pandas -- the school wanted to have him tested for add-- did that but was not it-- he has trouble finishing his work in school-- he is very smart but just cannot finish it--

so now they say he has anxiety-- i am taking him to a behavior help clinic this week to see what they say--

i have been reading about pandas --- he has the ocd symtoms alot--- i could make a list--

this last week has been really bad with the ocd and just mood changes so -- i went today and u guessed it -- step again with no signs-- no sore throat no fever nothing just a mom that thinks her son was not acting right

what do you recommend

any suggestions would be great -- or just a little tell me how it affected your son and his signs--

Claudia's picture

my son and PANDAS

Hi there,

sorry to bother you, but I read your post and i'm feeling desperate. My son had two blood tests last week after displaying very disturbing OCD related behaviors. ( intense hand washing, increased bathroom trip, etc.) one of the blood tests was VERY high for the strep bacteria. The other was in the high range of normal. What now? any advice? how have you dealt with this. Thank you very much ahead of time.

diana's picture

pandas

I have two sons with pandas. Both started with symptoms at age 10. It has also been horrible, especially with the second one being diagnosed. Both boys ages now of 15 and 13 still have problems.

Lindsey's picture

A relative of mine whom I am

A relative of mine whom I am very close to and who is also a student in my class is 4 years old and has recently changed his behavior dramatically, prior to Christmas he was very sweet, he would get along well with other children, write his name, participate in activities and be very helpful. He has had strep throat three times since Christmas and now he gets very angry, has uncontrollable crying and is distant. He can no longer sit still in his chair or write his name or color or anything. He doesn't play with the other children and will get obsessed with a toy or object such as keys and will not do anything else. He yells out random things and growls. I don't know what happened to him and had never heard of PANDAS before but we want to do something to get him back before it is too late. Any help would be greatly appreciated. This is so heartbreaking.

Anonymous's picture

pandas

My son, who is now 9, developed PANDAS at age 7. As stated in the article, he was perfectly fine and then suddenly, out of the blue, began washing his hands incessantly. He was afraid to swallow his saliva and would spit it out. This lasted for about 4 weeks. I immediately researched this and discovered PANDAS,which I had not heard of before. My son had two bouts of Strep that year prior to the symptoms. I took him to his pediatrician who thought it might be PANDAS. He received antibiotics for the strep. Since that time, he is generally symptom free. He had one break out of OCD behaviors about 3 months ago. He received anti-biotics for 7 days and symptoms diminished. Yesterday my son got sick again. Vomiting and then fever. He just woke up in the middle of the night and expressed irrational fears. He also claimed to hear people whispering. I am very concerned that this may be the beginning of another round or symptoms being expressed. I'm also concerned because as someone else mentioned, people often conceal their irrational thoughts, so I don't know if he is experiencing more symptoms than he is revealing to me. I'll take him to the pediatrician in the morning, but they often don't know how to treat this. I would appreciate any thoughts or feedback.

Anonymous's picture

Symptoms

I have a 7 yr old boy that does the same thing. He won't swallow his saliva. He spits it out and his lips become raw because he spits into tissue or clothes. He also washes his hands and face many times a day. He came home from a trip to his Grandparents house with chapped cheeks. He is afraid of touching anything, soap, anything freshly cleaned with cleaner or anything he thinks might have poison on it. Your post is the only one about both the washing and spitting. I was wondering if your child had strep before his sypmtoms started or was it a result from it? Thanks for your input.

Telya's picture

Pandas and mental hospitals - dont do it.

My now 10 year old son had a sever reaction to a case of strep in the fall when he was 8. Because we have a family history of social phobia when he developed school refusal we thought that the social phobia was becoming aparent. The symptoms expanded over the next few weeks to include oppositional defiance, loss of communicaiton and sever choriform movements. Because it was so sudden and dramatic, his Dr. admitted him to the hospital for several tests, MRI, ekg, (he had developed an irregular hearbeat), blood work, EEG. All came back in the normal range. He was then evauluated by the psychiatrist on call. He recommended admitting him to the hospital for 7-10 days. We discharged him from the hospital and began the admitting process to the psych hospital. After the intake process we decided that it was not what we thought it would be so after many hours of discussion with hospital staff, they released us at 2 am to take our son home.

He was admitted to an outpatient program for 14 days and released. In our opinion his improvement was due to the anti depressents and time. The thearpy only deepened our sons lack of trust since he spent alot of time in the "quiet" room because he wouldn't cooperate with the discussions and plans for the program.

After 6 months had passed from the original onset of strep, he began to have major improvements. He finished school and by summers end he was back to himself by 85%. In November my husband and I both noticed another jump in his ability to communicate and have fun again. We took him off the antidepressent in December.

He went back to school after the holiday break and all was good until about 2 weeks in, he started to have some anxiety about school, my initial thought was that maybe he needed to be back on the anti depressent. He started zoloft again and we were patient, waiting for the drug to take its effect. After 10 days of being on the medication he said he felt better, then on Friday the 6th of Feb. he refused to go to school, ran and hid in a closet and cried. He lost his speech, started to have small tics. I decided to take him in for a strep test even though he had no symptoms. It was positive.

I've done alot of research and found that it is very important to treat the strep as soon as you can because the antibodies attack the basil ganglia and over time the damage can be permanent. I'm currently looking for a home strep test so I can test him at the first sign of any unusual behavior. We are hoping that since we caught the strep and his symptoms were only evident for 3 weeks or so that this reoccurance won't be as bad. But again, time seems to be the only effective treatment.

I don't know if I gave you any info that is pertinant to you, I hope you found my story helpful.

Telya

Dan's picture

PANDAS

My daughter at the age of 6 (2002) had a severe OCD episode out of the blue. Her behavior changed overnight and we were devastated. She had strep throat at the time. Luckily our doctor said to us "it might be the strep". One of our relatives googled "strep and ocd" and we found the info on Pandas. We were shocked to learn of this disease. We contacted doctors all over the country including the CDC to find out that there was really not much known about Pandas. In fact it seemed many doctors did not believe the link between strep and OCD existed. I'm here to tell you it does. We got some national attention for this as we were invited to appear on the Jane Pauly Show in NYC to tell our story. We gladly accepted the invite as we felt it was necessary to get the word out to others about Pandas. We were also featured on Good Morning America and in a New York Times magazine article.

My daughter has been taking an antibiotic since 2002 as a preventative measure. I am uncertain and concerned as to the long term effects of the antibiotic but feel it is necessary to prevent a recurrance.

My daughter is a happy normal 6th grader with no sign of the ocd that gripped her so severley.

If you have a child that exhibits a rapid onset of OCD have them checked for strep antibodies in the blood and seek out a doctor that has some knowledge of Pandas.

TMom's picture

Antibiotic use

Thank you for your post--May I ask what antibiotic and for how long until you went to preventative level? Our daughter (severe Pandas reaction this past year) is now on Amoxicillan for 5 months full strength...I am wondering when it is safe to go to preventative strength...
Have you seen the website for SavingSammy? PANDAS book to be out in the fall and they used antibiotics long term, full strength.
Thanks again,
TMom

visitor's picture

o.c.d

i am 48 years old from india. i belong to colder part of india and has now migrated due to political disturbances.i belong to educated family. i had full blown o.c.d from childhood.it affected everything from studies to normal life.curiously , i had always suspicion there is somekind of infection that has plagued me since childhood even though i did not know aboutwhat kind of infection.From panic to o,c.d and now i have pshychotic symptoms.It will seem strange to you but i was secretly taking antibiotic time and again on my own and now browsing throgh internet i was surprised that some form of o.c.d are on antibiotic treatments.It will also interset you that my brother who is elder to me by two years had also some symptoms which he had not when he was young. but i had problem even when i was five years old. My question to you is for how long i should take antibiotic and which one because i discontinue every now and then. i am taking prozac also but my symptoms are as it is.

Frances's picture

PANDAS

My daughter is 6 and had a strep infection and 1 week later came bizarre behavior. Please tell me where to look for a doctor in Texas that might help me. What kind of doctors did you take your child too. Did she have to have meds for the fear that she was having?

audrey's picture

PANDAS

My daughter is now 6. She has had seizures since age 2. We have always found a link between her seizures and strep. They always go hand-in-hand. In addition, she used to also show signs of obsessive thinking brought on by strep. We live in NJ not far from NYC, and would love a recommendation for a physician who is familiar with PANDAS. I'm so happy for your success with antibiotics.
Blessing to your family.

sylvia's picture

please help

I came across your article__my daughther has just been diagnosed with s
Pandas.. I am so worried for her...she is in kindergarten and kids can be so meaniiii worry constantly..please tell me what course of action you took...I read that you did a daily dose of antibiotic. What kind,
? Any help you can give me would be awesome...thanks

Ronnie Morgan's picture

Hi I was hoping you could

Hi I was hoping you could tell me what tests were done to diagnose PANDAS.

Beth Maloney's picture

PANDAS test

It's a blood test for Group A strep. Tell the doctor you want an ASO Titer test run. The entire process is described in Saving Sammy: Curing the Boy Who Caught OCD. See www.savingsammy.net

TMom's picture

Antibiotic use

Dear Beth,

THANK YOU for writing this book--
Our daughter has been on full strength (500mg a day) Amoxicillan for 5 months now and is essentially well once more (after a year of severe episodic PANDAS/PITAND exacerbations.)
Thank you--
TMom