PANDAS: A link between strep throat and OCD

SerendipUpdate's picture

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

Natalie's picture

For skin picking you should

For skin picking you should seek the guidance of: http://www.trich.org/

Kari's picture

pandas

Hi, I read your post and wanted to make sure you know about Dr. Kovacevic (he is in Illinois). I have twin 5 year old boys who were both diagnosed with PANDAS within 2 weeks of each other. Their behaviors were different (one developed facial tics and hyperactivity and anxiety, the other started having stunning raging tantrums that looked like something out of a horror movie.) I was very lucky in that I knew someone who's children also had PANDAS and she insisted I look into it. There is a site that just launched called www.Pandasnetwork.org it will give you lots of great info. You can find Dr. K at www.webpediatrics.com . We did a phone consult with him and he was very good. Told us what tests to take and is helping us with next steps. FYI- both our boys have gotten much better on a heavy dose of Augmentin for 2 weeks. We had hoped that would do it completely, but some symptoms are still there. We are about to do a steroid burst for 5 days and then will consider IVIG. I know this can be devastating, the last 3 months have been a living hell for our family. With treatment, we are finally seeing results and I can breath a little bit better now. Hang in there and know that the chances are very good that you will be able to help your child get better sooner than later. Feel free to e-mail me if you have any questions. Best, Kari (mom of Jack and Nick) zazuk@aol.com

Anonymous's picture

pandas

your email address didn't work can you email me dkriese@sbcglobal.net

Anonymous's picture

You should definitely have

You should definitely have your son see a Neurologist to treat PANDAS.

Anonymous's picture

Why do you suggest a

Why do you suggest a neurologists ?

TMom's picture

PANDAS

FYI-- There is an ongoing dialogue by parents on PANDAS treatments at the following website.
http://www.latitudes.org/forums/

Most have found antibiotics, IVIG, and at times steroids to help diminish the OCD/tics during episodes.
Best,
TMom

EAMom's picture

strep titers: ASO/anti-dnase B can be low in PANDAS kids

I would like to clear up some confusion about strep titers (ASO/anti-dnase B).

Many doctors believe that these titers are some kind of a "test" for PANDAS and that a child with low (or normal) strep titers cannot have PANDAS. This is definitely not true. Lots of PANDAS kids have low strep titers. These strep titers are only useful when a child doesn't ever culture positive and you are looking for some "proof" of a past strep infection. (Unfortunately, not all kids with strep infections (or PANDAS) will have elevated strep titers.) I should also add that it is important to culture your PANDAS child even if you think it is too late to get a positive culture...some kids remain positive for months or years.

ASO/anti-dnase B are not the antibodies that cause of the auto-immune problem in PANDAS. For complete and well researched information on titers check out 3 posts by "Buster" (you may need to cut and paste the links):

1) these 2 posts (Aug.24 08 and Jan. 11 09) explain all about ASO/anti-dnase B strep titers http://www.latitudes.org/forums/index.php?showtopic=3756&pid=29305&mode=threaded&start=#entry29305

2) this more recent post (May 14, 09) discusses the actual (anti-neural) anti-bodies that are the problem (note: there may be additional antibodies that haven't been discovered yet). http://www.latitudes.org/forums/index.php?showtopic=4785

If anybody has any further questions about PANDAS please feel free to post on www.latitudes.org/forums under the PANDAS section. Lots of other parents will help you out with information on antibiotics, IVIG, doctors, and support.

M's picture

Strep OCD

In second grade, I had two week long fever that was later diagnosed to be strep. I was bed ridden and often delirious. I had several panic episodes during that time that involved sleep walking. At one point, my fever got so high that my parents had to put me into an ice bath to bring down the temp. My mom says that I wasn't the same afterwards.

Henceforth, I had obsessive thoughts that lead to panic attacks. I still do. These panicky feelings and thoughts, interestingly, increase when I am feeling unwell and feverish or overly hot. I am now 31 years old and I believe that the fever I had as a child still follows me in some ways, so this article sheds a lot of light onto an occurance that I have always viewed as disconcerting and bizarrely pivotal in who I have come to be.

Robyn 's picture

Is there any correlation between PANDAS and ASPBERGER'S?

Aspberger's Syndrome is not necessarily caused by strep. Or could it be? My child was just diagnosed with PANDAS, yet he exhibits all the characterisics of Asperger's. Are they the same? Related? Is PANDAS considered an Autism Spectrum Disorder? I am having trouble catagorizing this... the PANDAS will be treated with antibiotics. But what about the other issues with Asperger's Syndrome, such as impulsivity. How to treat? We don't have ADD or ADHD.

I suggest reading the book: All Cats Are Aspburger's Syndrome Cats, (or some similar title). It is a quick, easy-read picture book that fabulously describes all the ways my child is Aspberger's.

I am also curious to know if children with PANDAS were usually premature at birth.

I was prescribed an anti-depressant: Celexa, and I was told by our doctor that it did not cross into the breast milk. It does. I breast fed my child, so he was taking Celexa for the first year of his life. Could this have caused an auto-immune difficiency or weakened/compromised his immune system making him overly sensitive to strep? He was a fragile little preemie.

mich's picture

PANDAS/Aspergers

My 7 year old PANDAS son has all the symptoms of aspergers also. However, he is a big talker and goes on and on about subjects he is interested in. Very obsessive and repepitive in his thoughts on cetain topics. He gets very hyperfocused. He has mild anxiety and is scared to do things where he could get hurt like ride a 2 wheeler and swim in open water. His coordination and motor planning skills are very delayed. Handwriting and spatial are very weak. Also he has very mild tics that are motor and verbal. His attention can be easily distracted also with low impulsivity. The worse is his temper and anger. He overreacts and gets mean and melts down. He doesn't get sarcasm and jokes and feels picked on alot. He is average IQ although he is struggling in math and writing and spelling. I am very frustrated at getting the proper treatment for him. I am thinking a ped psychiatrist who deals with autism and tourettes is our next move. We are currently medicating him for the moods with abilify and starting celexa next week for the anxiety and obsessions. Also an antibiotic daily. I feel for you and can identify with the PANDAS/aspergers .
I do have autoimmune issues myself with polyarthritis. I was not on meds prior to his birth though. Try not to blame yourself for the medication with nursing. I have known others who breast fed on paxil and their kids are fine. I think this is mostly genetics and then the strep exposure. My husband also seems to have aspergers tendencies such as eye contact and social awkwardness.

Anonymous's picture

Pandas

Our 8 year old had moderate OCD symptoms with crying episodes.
Once a blood test revealed it was strep and she got antibiotics she
got much better. Now still some crying in school. It is very nerve wracking
because I wonder if there was permanent damage> Neurolgist wants another blood test done. Does anyone know of a DR. in Central Jersey area that would be good
with this?
Thanks

Anonymous's picture

pandas

Hi...I am just wondering how things turned out for your daughter and if you ever found a good doctor in NJ to deal with it. I, also, live in central NJ. I am very worried about my 8 yr. old daughter who started strange OCD behavior rather abruptly 2 weeks ago. I am waiting for the blood test results now...
I would appreciate any help,
Thanks!

Frances's picture

OCD behavior after a strep infection

Help. I live Amarillo, Texas and my daughter started showing signs of OCD after she had a round of strep. Who do I talk her to if my doctor has never heard of this. Do I take her to a ENT or a child psychologists?

Gumph's picture

PANDAS

My Dr. in Midland TX takes PANDAS seriously.  He has diagnosed and helped my son.

Mollybyday's picture

need the dr.

i would like the name of the doctor that diagnosed your kid please

shirley's picture

Can you please send me info

Can you please send me info on pandas doctor?

Franki's picture

Please Help

Can you please give me the doctor's name in Midland, Texas? I am in Amarillo, Texas and no one has heard of this. I would so greatly appreciate your help. I am constantly praying for answers.

Franki Lee

John's picture

strep, momo & ocd

I first read about the possibility of mono and OCD being linked through some articles written by Dr. Minirth at the Minirth Clinic. In 1985 I had strep in April. July I came down with Mononucleosis. During that episode, I had a nightmare dealing with anxiety, OCD, insomnia etc. I was in counseling for 3 months. It was the darkest time of my life. After reading these articles, I feel that there is definately a link between strep, mono, and OCD. I still deal with the OCD now at the age of 54, but it is under control to some extent. I will persue looking into this link in the hope of returning to a normal life with normal concerns. God bless all of you.

Day's picture

PANDAS

I have a similar story involving my 7 year old with tics & OCD behaviors. If anyone is aware of where to get help in Miami, FL- please help me out! Thanks!

Beth Maloney's picture

Florida Doctor

Dr. Tanya Murphy, University of Southern Florida. Much help will be found in the book Saving Sammy: Curing the Boy Who Caught OCD that will be released by Random House on September 8, 2009. www.savingsammy.net

Diana 's picture

Yes - I can help you in Florida - I am working with YALE Univ.

Please contact me at pohlmandiana@yahoo.com.
We have created a coalition of about 50 parents in 2008 thus far.
We are working with YALE univ. trying to get all the kids help.
Diana Pohlman
Menlo Park, CA

Anonymous's picture

PANDAS

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

OH PANDAS

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.
Michele

Robert's picture

12 year old son with PANDAS

Michelle,
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?
Gerry

Anonymous's picture

CYSTS AND PANDAS

DID YOU EVER FIND A CONNECTION BETWEEN THESE?

Anonymous's picture

pandas

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 haywire...total 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 backfire.now 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

Pandas

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 field...so 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

Atlanta

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

PANDAS

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.

Thanks,
Pamela

MJ's picture

PANDAS

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

Pandas

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. 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

Anonymous's picture

PANDAS

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

Pandas

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 : http://www.latitudes.org/forums/index.php?showforum=17.
Best regards -
PANDAS_Denmark

Post new comment

CAPTCHA
This question is for testing whether you are a human visitor and to prevent automated spam submissions.