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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

Jeanne Seagriff's picture

Have a child with PANDAS

I'd be happy to talk to you about my son who had PANDAS in 6th grade and has very small epidodes (now as a SENIOR in college)

I can talk to you about what helped him and what to expect etc.
Contact me via email and leave your phone number.

Anonymous's picture

Have a son with PANDAS

My email is JCS825@aol.com. I am happy to talk to anyone to share PANDAS experience. My son had PANDAS in 1990 and I was lucky enough that my dad found Dr.
Susan Swedo's article about PANDAS in US.World and News magazine.
I struggled with doctors who were very critical of the PANDAS theory and very quick to refer you to pychiatrists for the child's neuropsychiatric issues.
You need a medical doctor to treat the strep. You need to make sure that once treated you get the child tested again and make sure that the strep is gone.
You then also need a psychiatrist to treat the pychiatric symptoms until the strep titers go back to normal.
One of the key things to realize is that the pychiatric problems are caused by a medical issue (strep). You can treat the STREP itself with antibiotics but you are stuck with the residual psychiatric symptoms (like severe separation anxiety, OCD, tics etc)until the child's antibody level goes down (this can take 6 months or more). I had terrific results with a very minor dose of PROZAC just "to take the edge off". The level of OCD symptoms are directly related to the titer levels found in the ASO dnase-b titer test. This test is very important to diagnosing PANDAS. The higher the titer level, the more exacerbated the OCD and anxiety symptoms.
I am happy to share experience here. If you contact me by email and leave a phone number, I will call you back.

Lori Wesley's picture

PANDAS now senior in college as well

I believe my daughter (now a senior in college as well) had PANDAS as a child. She developed OCD symptoms literally overnight with numerous strep throat infections at age 10 and 11. She then got her tonsils out at age 12. I knew nothing about the correlation of the two until very recently. She continued with OCD and ADD symptoms. She takes concerta, but continues with OCD and irrational thoughts regularly. Now she is 22. What can we do?? Her regular dr does not recognized PANDAS. Do we need a neurologist? A Psychiatrist?

Anonymous's picture

Chorea pandas ocd

I've had the same experience inthe last 2.5 years. Our 7 year old son had a sudden onset of what i can only describe as a nervous breakdown. Within three days he progressed to the point I thought he was becoming suicidal. Saw pediatrician that day who refered him to psychiatrist next day. Family history of ocd's so dr. Put him on prozac and told us we'd have a new son in weeks. Father and i explained we didn't want a new son. Just our son back. Doctor insists symptoms were gradual and we just didn't notice. I firmly disagree. We've met the same resistance to ongoing antibiotics. I understand a little b/c it's the antibodies that seem to produce the problems. He has been through behavioral therapy and occupational therapy for sudden dysgraphia. My problem is his behacior will suddenly return after a few uneventful months. Dispite no changes in therapy or meds. Fluctating problems with what i think is a kind of chorea. At times i fear he will not be able to take care of himself or function in the real world. Then he returns back to "normal" and itnalmost feels like we as parents over exagerrated his problems. But when it hits, it is brutal. He is very intelligent but will become very irrational. Almost crazy. His movements become so extreme that it is hard to be around him for all the jerking, moving, and beeping noises he makes. Then it disappears. Each session seems longer and closer together. Need referral to someone (anywhere) whonis open minded to this and willing to treat him. Oh yes, his problems with dysgraphia and movement come and go as well. In teacher conference , his teacher told me he had recently had some strange bxs such as falling out of his desk or falling in hallway ( not tripping). Live in Houston area and would think there is somewhere or someone in our major medical ctr who could help. I just want my
son back before these problems cause irreversible pusychological damage. Plz excuse typos. I'm on my iphone.

Y's picture

PANDAS

It really sounds like PANDAS - my sons went thru similar had to go to Mass. General in Boston to find OCD Specialist to make antibiotic recommendations. Took me months to find someone to treat the PANDAS.
Try Pandas Foundation for recommendations.

Linda's picture

10year old son in the Woodlands, TX

My name is Linda. We have a 10 year old son, Hunter, who was ill in December along with one of his brothers. My husband and I were out of town for the few days that the boys had fever and were ill. Never went to the doctor. Several days later we began to see changes in Hunter's behavior and attention. Teachers reported that it was as if someone had switched off a light. Took him to his pediatrician because Hunter reported that he could not focus and he was having sudden intrusive thoughts. Things then began to get worse...OCD type behaviors, lost in the hall at school, bed wetting, not able to speak or eat, odd thoughts, walking around the house with his face against the wall, crying,... We removed him from school and took him to see a psychologist. Could not explain and had not seen this type of OVERNIGHT regression before. Thought about hospitalizing him. Dr. said that it looked like Post traumatic stress. To us it looked like a nervous breakdown. Kept him out of school and made an appointment with Dr.---PhD, MD, FAAP (Pediatric Neurologist) in the Houston Medical Center. He asked us if we have ever heard of PANDAS and said that he is not stating that this is what he has because it is not a confirmed medical diagnosis and he has not seen a patient with this before. My husband and I have read what little we could find on the topic and it describes what happened to Hunter almost exactly. Hunter has been improving and has been put on Prozac, but not sure if this is the correct thing to do. (could be temporary OCD???) No one seems to be able to give us any direction on where to go from here, what to expect, is this permanent damage to his brain, or how to protect him from this again. Should we contact researchers on the subject? Are there doctors looking for people who may have experienced this? I keep fairly detailed information and documentation on Hunter. I looked back at my documentation and found that Hunter had a short "Odd" type of "episode" last year and I was able to see that this also followed an illness of Strep. (As a side note: Simultaneously, while we were dealing with this with Hunter...we were also dealing with HSP (another rare autoimmune illness followed by Strep, with the son that had Strep at the same time Hunter was ill.) Dr. --- is having Genetic testing done and has ordered 2 different titer tests for evidence of previous Strep.
Would you happen to know of current research or researchers that we could contact or studies to join? We would be willing to go or do whatever it takes to avoid another reoccurrence of this very scary illness / episode. My doctors have been nice and willing to listen, but I would rather have a doctor with experience in this and leading us rather than us leading them. Houston Area Doctors???
Hope to hear from you and hope you were able to find a doctor! If so please share the name!

Pandas Mom's picture

Dr. in Houston Area

Linda, Have you had any luck finding a good Dr. in the Houston area that is knowledgeable about Pandas? I am also hoping to find one.

Anonymous's picture

Pandas

My son is having the same issues. Did you find a doctor in the St. Louis area that specializes in PANDAS????

Denna's picture

DID YOU EVER FIND A DR. NEAR

DID YOU EVER FIND A DR. NEAR ST. LOUIS? I'M DESPERATELY SEEKING ONE AS WELL. EMAIL ME AT DKRIESE@SBCGLOBAL.NET PLEASE

Anonymous's picture

Kansas City Pandas

Did you have any luck finding a doc in St Louis familiar with Pandas? My son had acute onset of OCD in June and he tested positive for strep (with no symptoms) a month later. His ASO levels at that time were 625... now down to 502, but still well above normal. Our pediatrician here in Kanas City has contacted the Infectious Disease docs at Children's Mercy because he knew very little about Pandas, but they think Pandas is a bit of a crack-pot theory. I'm really frustrated and know that my son is facing a battle against infection in his body.

Any info you can provide is great!

Anonymous's picture

email me if you think your

email me if you think your son has PANDAS. I too am in the St. Louis area. My pediatrician Dr. Kebler, Suburban Pediatrics, is very open minded and helpful. We've not yet solved anything but maybe could put our heads together.

Serendip Visitor's picture

PANDAS

My son has PANDAS and we have had good luck with our drs....I know of a few other moms. Always willing to share advice

Craig Bauer 's picture

Pandas

My son 12 has been suffering for the last 1 1/2 years from panda. we just heard about panda watching the today show 3 weeks ago and went to his pediatricians. The psychiatrist he was seeing for ocd never mentioned it over last year in half. we took the initiative and went on as our on activist.The pediatrician ran his ASO Titer count and it was in the high 550's we have put him on an antibiotic and his symptoms has strongly decreased. the pediatrician thinks he's had undetected strep at least since 2007.I am in st Louis if you would like to discuss more please e-mail me back. I've done major research lately on this.

Thanks
Craig

Anonymous's picture

Your email

Hi Craig.
Thanks for you post. Our 9 year old son experienced acute onset of OCD this past June. The associated depression and anger that came with him not understanding why "his brain wasn't working right" made us seek short-term inpatient treatment at a children's psyc ctr here in Kansas City. While there, they tested him for strep and sure enough, although he had no symptoms, he was positive. His ASO level was 625! We treated with antibiotics although also treating with zoloft and behavioral therapy. He seemed to improve in September.

However, we recently have noticed his OCD symptoms increasing again and know that as late as mid-October, his ASO levels were still at 502. His pediatrician tested him for strep, but it came back negative. He was at a loss and contacted the infectious disease docs at Children's Mercy. They basically think the Pandas theory is unfounded and have no advice or treatment options for us other than what we're doing. Both our pediatrician and the ID docs say if he doesn't have an infection, he should not have antibiotics.

Any thoughts or recommendations on next steps? Do we just watch his symptoms continue to increase? We can easily drive to St Louis if there are better resources there.
Many thanks
Elizabeth

Serendip Visitor's picture

The PANDA study and what I am going through now..

My roommate saw this today and told me to read it. I had strep throat, tonsilitis, and other throat infections a lot as a child. I was in the ENT's office on a regular basis, and finally they took my tonsils out.

Things should have cleared up, but I rememeber in middle school about 6th grade or so, I had strep throat so bad I can remember it to this day. I couldn't even talk my throat was so raw.

The last time I was ever sick was at the age of 18. I was diagnosed with OCD when I was 20. Again just last week.

I have been going back and for the the neurologist's office because I have symptoms of OCD, Fibromylgia, and MS. I have all these symptoms but nothing is ever 'evident'.

Another thing, when I was about 20 I was told that I had BiPolar Disorder, but later I was told that all of my problems were organic natured. I do not have the bottom part of my corpus collasum, and that explained the emotional problems.

Today I do have anxiety, panic attacks, I was anorexic from 16-19, and now I am OCD. This makes a lot of sense.

The question my roommate and I have is this; does the OCD hender my health or does my health make the OCD worse?

Nancy's picture

You need a long course of

You need a long course of antibiotics and you will feel much better soon. Penicillin is first choice, Keflex is second. Longer than two weeks. If you feel "all better" and disciontinue antibiotics, thennstart to feel worse, go back on till you stay feeling well. it could take months.

Maria's picture

Information on PANDAS synndrome

Hi,i am Maria from Greece.My sisters daughter has been diagnosed with PANDAS syndrome.We were told by the doctor that it is a very rare disease and he is not an expert.We have been to different doctors but they cannot help us.I am trying to do some research in order to understsnd what thiw syndrome is.Please if you have any information that could help me,i would be really greatfull.I need to know what it is so we can deal with it.Thank tou

DIMITRIS SERAFIM FROM GREECE's picture

PANDAS

ΜΑΡΙΑ, ΣΑΣ ΠΑΡΑΚΑΛΩ ΠΟΛΥ,ΕΑΝ ΕΧΕΤΕ ΒΡΕΙ ΚΑΠΟΙΑ ΛΥΣΗ ΜΕ ΤΟ PANDAS, Η ΚΑΠΟΙΟ ΓΙΑΤΡΟ ΕΙΔΙΚΟ ΜΕ ΑΥΤΟ, ΕΠΙΚΟΙΝΩΝΗΣΤΕ ΜΑΖΙ ΜΟΥ. ΤΟ e-mail ΜΟΥ ΕΙΝΑΙ:
ΣΑΣ ΕΥΧΑΡΙΣΤΩ ΠΟΛΥ.

Beth Maloney's picture

Saving Sammy: Curing the Boy Who Caught OCD

Saving Sammy: Curing the Boy Who Caught OCD will be released by Random House on September 8, 2009. The book has a wealth of information about PANDAS and treatment. You might consider pre-ordering the book by following the link on the home page of www.savingsammy.net. I believe this book may save you a great deal of time and heart ache, as well as provide your doctors with treatment information.

mich's picture

My son has had PANDAS for

My son has had PANDAS for six years with repeat episodes evn on antibiotics because he gets symtptoms from virals too. His latest issue is bowel encopresis. Has anyone else had this with PANDAS where they are not emptying their bowel completley yet soil themselves multiple times daily? It is such a mess and I am not sure how to treat it? He doesn't even know he has gone. Is this a neuro issue a GI issue or a psych issue? It is difficult to find one Dr. who will treat and follow up with us on PANDAS. Most Dr's want to pass it over to psych. I feel so bad for what this is doing to my son.

Chelsy's picture

Pandas

In Feburary my son ended up in the ER with encopresis. In May my son had a sudden onset of OCD and was diagnosed with PANDAS. I never put the two together until I just read your blog. I have three doctors working with me and my child. The one that said he has PANDAS in now retired. I am still battling with the others to convience them that he has PANDAS. His titer in May was 531.6 and his titer as of October, 2nd is 427.8. My Child became obsessed on May 22nd that things on his body were not as they should be, specifically his belly button, then it moved on to other things, nose, teeth, ears, whatever he could find. He would be in complete hysterics and ask the same questions over and over and over again. I felt like we ran in circles. I could not rationalize with this child one bit! We had to pull him out of school three weeks early because it completely disrupted his life. We spent the entire summer battling the OCD and once he was placed on the first round of anibiotics he seemed better but everyday was a battle of some sort. It wasn't until two weeks before school started that he got a sinus infection then he got much better because he was placed on another round of antibiotics. We are now in October and he seems to be getting overly emotional again so I had him tested on Friday and just received the results of 427.8. The infectious disease control doctor said it was not PANDAS because he had not been battling strep throughout the year! We had his tonsils out at 5 because he had so many cases of strep. How would he know if we didn't know? He had strep in May. Who knows how long his levels have been elevated. He did not have typical symptoms. We got lucky someone knew about PANDAS and said go get a titer done. Why are his levels elevated now if he is not battling strep? Is anyone else on OCD meds besides antibiotics?

Anonymous's picture

in reply to your story

I dont know where your from but i recommend Dr Arthur Buonaspina, he is a great man and a wonderful doctor, he is a pediatrician and he specializes in infectious diseases. He is in Staten Island NY.
I hope all is well with your son, and you get the help you need for him..

Isabel's picture

I would highly recommend the

I would highly recommend the book "Gut and Psychology Syndrome" I don't have the name of the author right now. It has a ton of very interesting information, and towards the end there is a whole chapter dedicated to children who have trouble emptying their bowels, and how bad this is for their health. She highly recommends the use of probiotics, and in some extreme cases, enemas may be needed. You may also have to look into food allergies. Please do check out this book and do not ignore the GI issues.

My son has had miscellaneous seemingly unrelated symptons. We were blessed to find a doctor who at the first visit had a pretty good idea it is all strep related (OCD, eye blinking, GI issues, swelling joints, fatigue, irritability). What gives me reassurance is that before they start any type of treatment, they are checking for everything under the sun (numerous blood tests, a complete GI profile, and even an adrenal test). We are going back on Wednesday to get the results...

Dot's picture

My son is much better now.

My son is being treated by a pediatric psychiatrist. She consults with a neurologist as needed. They both agreed to try IVIG therapy (intravenous immunoglobulin) back in March. He had one dose over 3 days. He has made steady progress and is now much better. Still being treated for anxiety.He is also taking Clonidine. We are not sure if this helped or not. We are weaning him off it now.
My advice is to try pediatric neurologist and/or another pediatric psychiatrist.

annette smith's picture

pandas in 4 yr old grandaughter

my 4 year old grandaughter overnight started with ocd and tics. she lives in denver. do you know of any doctor or doctors that deal with this in the denver aread. thank you.

Anonymous's picture

PANDAS

Question: Does anyone who has a diagnosed case of PANDAS recall their child ever having bouts of severely swallen eyes between the ages of 3 - 6. We think our son might be suffering from PANDAS due to a strep diagnosis. He has had a history of swallen eyes over the years. His eyes appear to look like he was punched during a fight.

Anonymous's picture

The swollen eyes sound like

The swollen eyes sound like an allergy to something (which like PANDAS is also caused by an immune system malfunction). You should have this child tested by an allergist/immunologist. Some allergies are severe and can be life threatening. Good luck.

Anonymous's picture

Pandas question

My son has ADHD and recently was diagnosed with strep throat and treated with antibiotics. During the course of the antibiotics his teacher e-mailed me to tell me how great he was doing and asked what "magic dust" I was giving him. I didn't pay much attention to this at the time but now it all makes sense. It's been about two weeks since he has been off the antibiotics and he has become completely unmanageable almost overnight. He has developed terrible ODD and spends most of the time angry and hostile, screaming at everyone in the house which he has never done before. He also has OCD and obsesses over toys, objects, and has many very bizzare rituals he has to follow to do almost anything from taking a bath to leaving the house. He has developed high anxiety and picks at his skin until it bleeds. He now has facial tics as well as spitting tics. Our lives have turned into complete HELL over this. After reading about it and all the comments I am sure my son has Pandas and I am desperate to find a doctor to diagnose it and begin treatment. I live in the Milwaukee area. If anyone has some information that would be helpful to me please let me know. Thanks so much!

linda's picture

Pandas

You should seek out Dr. Kovacevic in Chicago. His number is 630-986-1010. He has been treating Pandas patients for the last 10 years. Also, check out Pandasnetwork.org

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