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

Caryl's picture

PANDAS

I am 57 years old, suffered Strep throat several times yearly as a child, developed OCD and separation anxiety that went untreated. As an adult, I have had OCD and separation anxiety continually, depression/anxiety issues and PTSD that I finally had diagnosed and have been being treated for off and on for the past 36 year...and a compromised immune system and all that goes with it. My daughter has OCD/anxiety issues and now my 11 year old Granddaughter is having real problems with OCD, ADHD, severe anxiety, separation anxiety, anger, had a real issue with urinating at age 5 and has trouble leaving the house. I talked my daughter into "forcing" the doctor ( who didn't think it was necessary) to do a blood work up as the meds she was getting for depression/anxiety were just not working. After he finally did, he called my daughter and mentioned the possibilty of PANDAS, which he didn't know much about, but would investigate. We are both doing our homework and I just came across this site. I am wondering if it is genetic...maybe I had/have it and passed it on? And more importantly...will my Granddaughter be able to have a normal happy life, unlike mine? I worry so much about her as she is so sad...is there someone in Washington state that anyone can recommend? Any books to get, articles to read....any hope? Any help would be appreciated. Thank you.

LAMP's picture

Help.

I have an 8 year old (healthy otherwise) daughter.
She started obsessing and acting distressed about this time last year. It happened out of the blue. After many phone calls to local therapists for anxiety and OCD, and many tears from both my daughter and myself we ended up at a therapist's office that specializes in pediatric anxiety. It helped slowly but surely. Although still riddled with anxiety, we have been able to keep it at bay with very little bouts with the OCD. About a month ago we (the counselor and I) noticed some signs of it escalating again. She is very repetitive with her obsession and continually expresses concern and guilt over 'bad' words said in her mind. (Words that she would NEVER say otherwise, like frickin', stupid, hate).There is nothing I can say, nothing I can do to ease her mind of her latest obsession or her concern for the 'bad' words said in her mind. I feel helpless, and she is exhausted and in a perpetual state of anxiety. I miss her smile and I just want her to be happy again.
We have NEVER tested positive for strep. Is it a coincedence that it is spring again? I'm not sure what to do, or if this is in any way relative to this topic. Any suggestions are helpful. We live in Edmonds Washington.

Juniper's picture

Reply to Help

My daughter has OCD and Tourettes. She does not swear like some people do, but she focuses on words. Sometimes they are bad words she is just able to refrain from saying them at this point. Your daughter may be starting Tourettes type symptoms. does she have any repetitive body movements or ticks such as eye blinking excessively? This may not be the case. I just thought I would bring it up in case it helps. Good luck!

Lori's picture

Your daughter's Anxiety

Hello LAMP~ I can tell you what I've learned about OCD/Anxiety. First of all, NO it's not a coincidence that your daughter's ocd/anxiety has returned during springtime. My son, who is now 14, developed what we thought was tourette's syndrome back in 2008. Upon researching and surfing the web, the word P.A.N.D.A.S. kept popping up related to what my son's symptoms were (involuntary muscle movements, OCD rituals, anxiety). Long story short...4 years later, a visit to a doctor I found in CT who treats children with P.A.N.D.A.S, (not necessarily caused by just strep), ran all these tests on my son, and we found out that he has past and active lyme's disease among other past viruses that he tested positive. However, the doctor said that since my son is prone to sinus infections, primarily in the springtime, he believes he has strep trapped in his nasal cavity. He was put on two months of augmentin, which he showed signs of improvement in his tic movements, but not the OCD rituals. He later was given prednisone to drain the strep from his nose. His tics seemed to disappear for a short while but later returning with the OCD rituals still in full effect. You see, he was supposed to be on a much higher dosage of augmentin to start, but the doctor was hesitant since he developed c-diff colitis years ago on cephalexin. I guess what I'm saying to you is, your daughter doesn't necessarily have to test positive for strep in order to be diagnosed with P.A.N.D.A.S. There are other viruses and infections and allergies that can trigger the autoimmune response that cause PANDAS. This is what the doctor told me. He is an immunologist/allergist who specializes in the treatment of PANDAS. He also has his own infusion center located on the premises of his office. IVIG infusions is sort of a last resort to treatment of PANDAS if the antibiotics and/or prednisone do not work. I hope this helps. Good Luck.

kwartist's picture

awareness can help others

Kids with P.A.N.S. are worldwide and we can make a difference together. Parents need to take care of themselves in order to be able to help their kids. I have witnessed this and watched how it makes siblings feel as if they are now living among strangers... when it is actually their big sister.

Serendip Visito  jennifer's picture

make a difference

What can we do to make a difference when the doctors where I live don't have a clue what I am talking about when I say pandis

hungry joe's picture

Strep Throat cured by Fasting

Just a quick note here that I have found the best cure for a strep throat is to fast for a day or two. Rarely does it take more than that.

I would give more details but these posting things haven't worked for me at all today, so until they start working properly . . .

Jennifer's picture

need PANDAS specialist in VA/MD area

Hi,
How is the best PANDAS specialist in the VA/MD/DC area? We are in WV but nearby. My 15 son with HFA has PANDAS and needs more aggressive treatment. Thanks.

Jaci's picture

PANDAS in VA/MD/DC

Hello, I live in Loudoun County, VA, so probably near you, and I was wondering if you found a local specialist? I am sorry I can't help you, but I am checking into treatment for my son, so I wanted to see if you found anybody. Thank you in advance for your reply.

Lori's picture

PANDAS Experts

Hi Jennifer,

I am unaware of PANDAS specialists in that area, but I know you can find one through the PANDAS Network site. If you google PANDAS Network, the site will come up, and there is a link to contact them if you have any questions. They may be able to refer someone in your area. I'm not sure if you are willing to travel to CT, but this is where I live, and my son sees a PANDAS doctor that is currently treating him.

Cynthia 's picture

Adult PANDAS

Anyone in the Portland Oregon area specializing in adult PANDAS?

Serendip Visitor's picture

Help

Hi my son is in process of being diagnosed with pandas by my dr here in NJ. He is on antibiotics. Can anyone tell me if they have had a great day in treatment and then a bad day the next. We thought we were on the home stretch but now seems to be having a bad day with anxiety today..please help if you have any info

Serendip Visitor's picture

Doctor in NJ

Hi...the doctor my son is currently seeing is located in CT, but there is a very good doctor in NJ that is well versed in treatment of PANDAS. His name is Dr. Rosario Trifiletti (Ramsey, NJ-I believe). In fact, this is the doctor that is currently treating all the teenage girls who suddenly came down with tourette-like symptoms in upstate NY. He seems to think it is an autoimmune response to a trigger, and he is currently treating them with great results.

Patrice 's picture

Need a doctor

Who is your doctor in New Jersey? We live in Southeastern, PA (Chester County). Do you know of any other doctors? Thank you!

Patrice

Lori's picture

PANDAS-ANTIBIOTICS

Hi,
My son began treatment with antibiotics this past February. Initially, the first two weeks on the antibiotics, his tics began to diminish, especially his eye blinking. We thought we were home free as well. By the beginning of the third week on the antibiotics, all of his tics slowly returned. My son also has OCD issues...tapping, touching things repeatedly. It takes him a very long time to tie his shoes, due to the fact that his laces have to be just right. His personality has changed as well. Although the tics seemed to have subsided in the beginning of treatment, his OCD did not. Upon questioning his doctor as to why a sudden return of his tics on the antibiotics, he commented that he most likely needs to be on a Prednisone Burst for at least two weeks, because the antibiotics were not strong enough to possibly eradicate the strep (which he thinks may be in my son's nasal cavity). My son is unable to be put on a high dosage of antibiotics, because he contracted c-diff colitis a few years back on another antibiotic he was taking. I live in CT, and the doctor my son sees is a specialist in PANDAS diagnosis and treatment. The next step is the prednisone, but I haven't begun treatment for him as of yet. I am waiting until he has a few days off from school to start the treatment. His doctor did a whole immune work up on my son, and we also found out that he has past and active Lyme's Disease, so that needs to be addressed as well. He went ahead and tested 14 Serotypes of antibodies my son has to fight off the strep virus. Out of the 14 he only has 4 that help his immune system to fight off the strep. I also had the doctor test my son's titres to check if he still has immunity towards all the childhood immunizations he had years ago. I haven't given my son any immunizations since 2007, due to all of his tics, twitches, etc,.. Once his test results came back, I found out that he DOES NOT need any immunizations that are required, because he still has immunity towards all of them. I needed these results to present to the school district. Keep in mind, if your son has strep/PANDAS, you don't want him infected with any virus, even if it's a small dose of immunizations. I can go on and on, but I hope this helps.

Serendip Visitor's picture

immunizations

New to PANS/PANDAS....are you saying not to vaccinate your child if they have PANDAS? Unfortunately I did vaccinate my kids until I realized all the issues with vaccines. They haven't had any in a few years, but I'm sure they are due for the "regular" ones. I usually research and then decide whether or not to give them it.

Serendip Visitor's picture

Immunizations and PANDAS

When I asked my son's doctor about vaccinations for my son, he said it isn't a good idea to vaccinate him while he is currently experiencing an autoimmune response to "something". You see, he believes my son has PANDAS and most likely was triggered by having multiple bouts with strep. Once tested for strep, his results were negative, but he only has 4 out of 14 antibodies to fight off the strep virus; Which leads him to believe that he is carrying strep somewhere in his body, like his nasal cavity. My son is also very prone to sinus infections as well. His doctor went on to say, until his body is "back to normal", we shouldn't be exposing him to ANY virus, which also means he needs to stay clear from vaccinations as well. This could trigger another autoimmune response in his body. My son was given antibiotics to try and eradicate any strep in his system, and although it helped him somewhat, he wasn't able to be given the full course of treatment to allow his body to heal, because he had developed c-diff colitis years ago on another antibiotic. I asked his doctor to check all of his titres to see if he is still immune to all viruses, because he was once immunized for all his shots. I needed this proof to present it to his school, since he has now entered high school. His results indicated that he is still protected from measles, mumps, rubella, chicken pox, hepatitis, whopping cough, etc,.. I think the only result that was negative was for tetanus. Once he is older, and his body has had a chance to heal a bit more, the doctor said that slowly he can be given immunizations, especially before entering college. I hope this helps. You said your child has had immunizations before. Have the titres checked to see if immunity still exists. If so, the vaccinations aren't necessary.

Paula's picture

PANDAS Specialist in PHILLY AREA?

Does anyone know of a PANDAS specialist in the Philly area?

Serendip Visitor's picture

I've had it

I've had Pandas myself, and it's been a few years since. Only kids can get it, before puberty. I got tested, but all my results were all over the place, and finally a doctor diagnosed me with Pandas. When I got diagnosed, and read about it, everything made so much sense. I was a straight A student, playing four sports a year, doing Science Olympiad, on Student Council, and friends with everyone. I wad put on a ton of medication, and finally I got an IVIG. The next day after I got that I went to the emergency room, and I was diagnosed with aceptic meningitis (not the one that can be spread) but that was because they didn't put if in right. I went from the perfect daughter to screaming, gettingad, having vocal tics, handwriting getting worse, and not knowing what had gone wrong in so little time. I've gotten the IVIG twice, and am feeling health. I'm going back into sports, and in the fall will go back to school. I got diagnosed the middle of seventh grade. I missed the last month of seventh grade, and I went back to school in the fall for eigth grade, but didn't completely finish the first semester. I'm in ninth grade now, haven't gotten sick, and finally after two years am healthy and getting my life back. It's hard going through this, and those who have, no one will ever understand them. I've been to many doctors and hear the same thing, "it's not a real disease." But it is. If you saw me or anyone with it you would know for sure that it's real. Many people think they have it, and are worried their kids do, but it is so very rare. I know from personal experience that if is the toughest thing to go through, my mom was crying, I spent hours going to doctors, and my life fell from beneath me. I can't wait till fall to go back to school, and Pandas takes a huge toll on your family. I remember that most days I wouldn't even show up until eleven it twelve for school. It was tough. I'm home schooled this year, getting through the rest of eighth grade and ninth, and even if wouldn't say this then, I'll say it now. I'm glad I got diagnosed, because if I didn't it would've gotten worse. Also, I thank the doctors who helped me, and God for keeping me healthy and helping me and my family throughout this.

CT Visitor's picture

helping someone we know with pandas

My son has a friend who is 11 that they think has PANDAS. I had never heard of this. Today my son asked me what his friend has as kids are saying that if he even sees a crack in the wall he has to go to the nurse. I feel terrible for the boy and his family. I know that they were giving him antibiotics. From comments related to this article I see that perhaps an IVIG or switching to organic foods and no dairy might improve the condition. My son has Type 1 diabetes and celiac disease, which are both autoimmune diseases as well. There is no history of autoimmune diseases in our family. Why are so many autoimmune diseases on the rise? What can we do to help my son's friend who has PANDAS and his mom and sister that he lives with?

Serendip Visitor's picture

helping

my son who is 9 has P.A.N.D.A.S he was diagnosed just after his 8th birthday. I got thru the first couple months with support and lots of it co-workers and friends helped to keep me grounded and kept me researching. Alot of doctors don't believe in it so as a parent of a P.A.N.D.A.S child you do the bulk of the research and advocating for your child. I would suggest the mom go to facebook the link is called PARENTS of kids with P.A.N.D.A.S this group is the most knowledgable group of parents that are all going thru the same thing. Let your son know to be patient and kind his friend can't help some of the quirky things he does. I wish there was more I could offer just be there to support maybe help research if you have the time.

Lori's picture

PANDAS

Hi...I just read your comment and feel for your son's friend. What happens every time he sees a crack in the wall is the effect that the infection, (whether it is strep or some other infection), is causing him to act this way. it is an autoimmune response that attacks the brain cells, therefore he is unaware or unable to control his actions. This is the OCD part of this disease. I'm not exactly sure where your friend lives, but I am in CT, and my son is currently under the care of a specialist who dedicates his work towards PANDAS. He has helped many, many children and adults. He is extremely knowledgeable of infusion treatments (IVIG), and he has currently put my son on antibiotics. My sons were not breast fed as babies, and through much of my own research, I firmly believe this is where it all began. I have identical twin boys, and both of them were bottle fed from the get go. I didn't realize the effects of breast milk and a child's development and strengthening their immune system. What's done is done. But I do stand behind this, and I think it is so important during a child's first year of life. If you would like the name of the doctor my son is seeing, please let me know. I'm not sure if we're allowed to indicate names on this site, so I would appreciate it if someone let me know if it is okay to do so. Also, tell your son that this is something "normal" that happens when children have PANDAS, and that his friend can't help it. I'm sure your son is a terrific friend to him.

Jaci's picture

Hi Lori, I just want to tell

Hi Lori, I just want to tell you not to beat yourself up about the breast feeding. I believe in it too, and I breast fed all five of my kids till they were at least one. However, we've had all kinds of tics, OCD, ODD, and ADD things going on, so really? Let yourself off the hook :). I'm researching the whole PANDAS thing right now, and I notice that a lot of your posts help me the most to gain some clarification. So I just want to thank you.

Serendip Visitor's picture

PANDAS

Hi Jaci....I just wanted to say You're Welcome. I try to add as much input/info as I can with the hope of helping others who are going through this. I have learned a great deal these past few years just through my son's own experience with PANDAS. He is doing better, but not out of the woods just yet. He was currently taking Doxcycyline for a past and current infection of Lyme's. Hopefully, he won't develop any symptoms from having had that in his system, which most likely went undetected until his doctor in CT diagnosed him. My son still has tics every now and then, but they aren't noticeable as they were before treatment. The problem we are faced with is that my son is unable to have the full course of antibiotic treatment in order to rid him of all his tics. He was on 500mg augmentin, 3x a day for two months. He suffered from c-diff colitis 4 years ago while on a cephalosporin antibiotic, so his current doctor was a bit reluctant to give him such a high dosage. So we are sort of "stuck" right now, because his symptoms have diminished but not all. I am faced with the concept of forging ahead with the proper antibiotic treatment and run the risk of activating his c-diff colitis at such a high dosage of antibiotics. He is also taking a very good probiotic...I give this to him religiously...on or off any antibiotics. All in all, he seems to be fine with all of this. Like I said, his tics have diminished, but the OCD remains the same. We will be visiting his doctor soon. In the mean time, everything seems to be better. If he ends up staying the way he is today, I thank God for even the slightest change, because it has made a difference in his symptoms. Good luck Jaci. E-mail anytime.

Kristen's picture

PANDAS

To Lori,...would you please let me know the name of the doctor in NJ that has helped. My daughter was recently diagnosed. Thank you. Kristen

Lori's picture

PANDAS

Hi Kristen,

The doctor is located in Connecticut. His name is Dr. Bouboulis in Darien, CT. If you google his name, you can view his web site. He has a very informative site and talks about treatments as well. Good luck to you and your daughter.

Serendip Visitor Lynn's picture

dr for pandas

I was curious to see who you see for the PANDAS in CT. I live in RI and my son was diagnosed at the end of last year with PANDAS by his pediatrician and he referred him to a neurologist who we saw in Jan and she pretty much told us that he fits the profile for it but she doesn't believe in PANDAS. She said she might eat her words in 5 years, but that's where she stood right now. Which was no help to us. I have tried to research dr's in our area familiar with PANDAS and I found a Dr Louise Kiessling but she retired last summer. I am waiting for an appt with the group of Dr's she worked with. I read your comment about the breastfeeding and my son was breastfed just under 10 months.

Lori's picture

doctor for PANDAS

Hi Lynn,

I would be more than happy to give you the name of the doctor my son sees in CT. His name is Dr. Dennis Bouboulis in Darien, CT. He is actually an immunologist, allergist and asthma specialist. He is very well versed in PANDAS, and has treated numerous children including adults. He was on the Today Show in 2010...he was the only doctor who was able to help this one girl who developed a sneezing tic after having a bout with the common cold. This girl's mom had taken her daughter to several doctors, who all misdiagnosed her, until she heard about Dr. Bouboulis. He was able to eliminate her tic within two weeks of treatment. Check out his web site...once you google his name and location, (Darien, CT), you will see a link to his website. There you will find the Today Show video, and a lot of info in regard to PANDAS. If you would like to e-mail me privately, that's fine; Please let me know. Good Luck to you and your son......Lori

Paula's picture

PANDAS - CT DOC

Hi Lori -- We just moved from CT to PA, and I'm wishing I had known about this doc before we moved. I am just learning about PANDAS. My 14 year old had sudden onset of OCD and an Anxiety Disorder in 5th grade -- it was like she was one kid, then she was another. School aversion, separation anxiety as if she was a preschooler all over again, developed Trichotillomania at the same time (which is also related to Tics). I didn't know about PANDAS back then. Wish I did. Now, I'm wondering if that is what she has. She had strep 3 times this past year, and her symptoms are much worse again -- same as 5th grade, but worse. She's actually failing out of 9th grade at this point; however, it is complicated because we also recently moved, and that could have exacerbated the anxiety and OCD, too. Anyway--I can't seem to find a doc that will really take this seriously, find out what is REALLY going on here, and pay attention! I would love to email you privately, as you seem to have some good info. my email is paulap@musicmakersacademy.com.

I guess my main question is: Since she HAS been on antibiotics a few times since 5th grade, yet still has the anxiety/ocd/trich symptoms -- does that mean she does NOT have PANDAS?

Lori's picture

PANDAS

Hi Paula,

I sent you an e-mail, privately, so hopefully you were able to read the info I sent you.
If not, I will be more than happy to post on this blog.

Lori's picture

PANDAS

Hi...I am responding to your blog about PANDAS. As a mom, I am so very happy to hear that you are getting the help you rightfully deserve. You are well on your way to recovery and getting your life back. It has been said the earlier treatment begins the better the results. My son who is 14 just saw a specialist yesterday who diagnoses and treats PANDAS. It was said 4 years ago that my son has Tourette's. I haven't fully accepted this diagnosis, and I knew there had to be more to it, b/cl of the sudden OCD-like behavior as well. It turns out this new doctor has diagnosed my son with PANDAS and will begin treatment soon. We are not going the IVIG route at this time, but we are starting him on antibiotics just to see if there is a difference. This is where the doctor said we need to start. I just hope he is spot on about his diagnosis, and I can only hope for the best. I wish you all the luck in the world, and you'll be back in school before you know it. The best of luck to you. Keep me posted on your recovery.

Erin De Cesare's picture

Adult sufferer

I am amazed to read the overwhelming amount of cases here. I am in my 50's and have suffered with OCD all my life. I never related the strep to my condition until doing extensive research. While I don't have tics, aggression or some of the other symptoms, I am plagues with the generalized obsessions and compulsions that are impeding me socially and emotionally. Is there a possible treatment this late in life, short of a transfusion that some underwent? Anti depressants have not helped. I feel hopelessly enslaved to my condition. I'm in OC, Calif.

Thanks,
Erin

Renee Musicus's picture

Familial history of Strep & Scarlet Fever

Erin,

I am 60 and have TS+ since I was 5. My mom just told me that I had a convulsion at the age of 2 from Scarlet Fever. After that I started acting different. The at 5 I developed tics. I spent most of my young adult life searching for answers trying to be "normal". I started taking meds in my late 20's-early 30's with success. But every neurologist and psychiatrist said I didn't have Tourettes until I moved to Baltimore in 1992 and went to see Harvey Singer at Johns Hopkins. That's when I got my formal diagnosis.

Since then I've been on clonidine, which is a first-line medication for TS. Also on Neurontin, a mood stabilizer and celexa, an anti-depressant. I completely changed my life.

I am in energy sales and see people all the time who have no idea I have TS, ADHD and extreme anxiety because the meds mask them. However, I am not telling you to take meds. The reason I'm writing this is because this is the first time I have hope of finding a true fix for the underlying problem, which is PANDAS. It also explains why I tic less when I'm on antibiotics (something I try not to take too often anymore.)

I'm going to make an appointment with a doc in Baltimore, where I live, or go to NIH in DC and find someone there. I've always been accused of ticcing for attention. Believe me, that attention I don't need.

Thanks for listening.

Take care and good luck.

Renee

Lee's picture

Would like to be contacted please

Hi I have the same problem as the member above, please can some one contact me please.

Lee

Serendip Visitor's picture

Go to Beth Alison Maloney's

Go to Beth Alison Maloney's Face Book page for a good list of doctors or to her website.. SavingSammy.net.
Also PANDAS Resource Network has tons of info... Do Not take you Pandas kids to John's Hopkin's. Dr Harvey Singer todl us it doesn't exist! Also the tv show The Doctors will be airing an episode about PANDAS on November 1, 2011. I suggest you check it out. :)

Wendy's picture

Autoimmune

I suffer from MS, which is also an autoimmune disease. There are many hypotheses about what causes autoimmune disease, but infection is certainly a common and plausible one. Personally, I believe that autoimmune disease is sometimes one of the symptoms of leaky gut syndrome (http://www.cbfm.org/what-are-the-symptoms-of-leaky-gut-syndrome/) and can be treated, at least in part, with nutritional supplements and the right kinds of changes to your diet.

Marie's picture

Coughing Tic?

I have been trying to figure out why my daughter has periods of months of dry coughing ever since she was 4. Have ruled out asthma and cannot find an allergy source. It all started after she had strep several times one summer. In yet another internet search for answers I just came across the PANDAS diagnosis. She doesn't have any of the more severe symptoms many of you describe. But could this be PANDAS? Did anyone else have a child who started with this kind of tic?

Teran's picture

coughing

my son had a chronic cough and throat clearing (every few minutes). It was caused by post nasal drip from a sinus infection. it took two months of antibiotics and nasal washes with a neti pot to stop it.

Lori's picture

coughing

Hello Teran,

My son's current doctor who is treating him for PANDAS told me the very same thing. He said that strep isn't always found in the throat. It can be hiding in the nasal passage, (and other areas), which causes the post nasal drip to become chronic, and in some cases causes tics in children. My son has issues with sinus infections, especially during allergy season. His doctor is currently checking him to see where and if he has any strep running through his body. He is currently taking Amoxicillin 3x a day for the next month to see if his tics, twitches and OCD calm down. It has been 11 days since starting the treatment, and my sons tics and movements have diminished somewhat, until he recently caught another virus while on the antibiotics. His tics seemed to have returned, but not as frequent as before. As for the OCD, these symptoms have not gone away at all since starting the treatment. I know it's too soon, but I hope this treatment works for my son. I am so very happy to hear that your son was cured with proper treatment. By the way, did your son have any side effects from being on long term antibiotics? My son is currently taking a probiotic in conjunction with the antibiotic, but his stomach is just so sensitive. Thanks!

Serendip Visitor's picture

IRecently there was a girl in

IRecently there was a girl in the news that sneezed over 1000 times a day... it turned out that it was a tic from having PANDAS. Anything is possible.

Linda's picture

THIS IS WORKING FOR OUR SON!!

1. Our son has improved greatly! He gained back the weight and is eating again. His behavior is MUCH better when the Strep and infections are kept at bay. We believe it is due to the antibiotic resistant Strep that has developed in US meat supply. There are many articles from CBS and other sources on the study that came out last month. Please google.
2. Put your children on all organic produce and non atibiotic, non hormone meats.
3. Give them probiotics and digestive enzymes.
4. Get them on an antibiotic to hold off the Strep and other infections. The strep triggers the OCD, tics and rages.
5. See a pediactric behavior counselor who has helped families deal with PANDAS.
We moved from Kansas City area to TX. If you are in KC, please see Dr. Corinine at Diokonos. He helps with behavior and parenting strategies with PANDAS children.
Please let me know how this strategy works for you. We do not feel things will improve for our children unless they are completely taken off all processed meats and produce and dairy!!! NO HORMONES! NO ANTI BIOTICS! WHOLE FOODS INC WAS OUR GOD SEND!!

Frankie's picture

There is hope.....

My daughter was diagnosed with OCD when she was 12 by Dr. Elia. Back then (that was over 11 years ago) most of the research on OCD had been done on adults and Dr. Elia explained that at that point our options were (1) Medications (2) Behavioral Therapy or (3) a combination of both. As there wasn't much research into the long term affects of these medications in children we opted for Behavioral Therapy alone. One year later she was symptom free. We saw improvement from early on in the therapy. She went on to be a happy young women, though prone to some anxiety (but then again I know plenty of people who don't have OCD that are way worse). She graduated from college last year, Is working and living away from home in another state, has a wonderful boyfriend and no reason not to believe that she will have a happy and productive life. I feel for all the parents dealing with this right now. I know how much you are fearing for your child's future. I want you to know that although it is important to educate yourself about this disorder, sometimes you have to turn off the computer, put away the books about OCD and tell yourself that your child is not a statistic and you WILL prevail. Hang in there! Good things are ahead!!!

Serendip Visitor's picture

thanks

Bless you. I pray that we will see the right specialist who can help without alot of drugs . If we can;t erase this we need to learn to live with it without being doped up all the tme. My son is smart has a great sense of humor and is the joy of my life. He can beat this.

Serendip Visitor's picture

OCD daughter

My daughter was diagnosed with OCD at age 15. We have tried many things including vitamins and other supplements, neurofeedback, behavioral therapy. At times, I am quite convinced that she has PANDAS because she was so prone to strep in elementary school but I can not get any doctors around here to seriously consider this possibility. She has strep antibodies but the doctors say they are within the normal range .. yet she had deterioration of her handwriting and math ability along with other symptoms that seem common to PANDAS like an extreme disgust with other people's feet. She seemed to get better for a while when she was on acne medicine that was a wide spectrum antibiotic but when she stopped taking the OCD "rebounded" and became worse than ever. As it stands, she is 17 and has good days and bad days. A new therapist seems to be helping but it has only been six weeks. Anyway, thank you for the encouragement above especially about turning off the computer and believing your child WILL prevail. God Bless!

Serendip Visitor's picture

PANDAS

I'm glad I found this article. My 8 year old daughter has been showing signs of OCD for the last week, and it's getting worse. She has bad thoughts and feels guilty about everything she does. Things that aren't even that bad. She will sit for long periods of time just thinking of something that she might have done to confess to. She's very clingy and now has an obession with tornados. Everyday she will ask me the same questions, Have you eve been in a tornado? Do we have them here? Can they kill us? It's really starting to worry me. She was diagnosed with strep throat about a month ago.

Pam's picture

My 8 yo daughter has changed overnight too.

My 8 yo had been really sick with a cold, high fever, sore throat, etc. I treated the fever at home with Tylenol and let the "cold" run its course. Her sore throat lasted a week. was just about to take her to the pedi when she told me it went away. I did end up taking her to the pedi when she complained of ear pain a few days later.

Shortly after the sore throat went away, she started with obsessive thoughts about swearing. It started at bedtime last Friday night and it has consumed her thought for the last 4 days. She feels like she needs to confess every one of these thoughts to me. This happens all day long. I am worried about her. She explains it as "I just can't take these thoughts in my head." "I don't mean them." "They make me feel bad." "They make me worry."

She also told me she blames these thoughts on her cold. She told me that she wishes her cold would go away so the swearing thoughts would go away too.

I came to the internet to research her symptoms and found PANDAS. Now I am worried. Could a throat culture even show anything at this point? (she doesn't have a sore throat anymore)

Hmmm.

AKK's picture

8 year old daughter

This sounds EXACTLY like what happened with my 6 year old daughter last year. The crazy thing is that she also had very guilty thoughts and feelings and worried about tornadoes obsessively. She had night terrors related to tornadoes and refused to sleep alone. She would scream in her room. This was so drastically different from our well-adjusted, good sleeper and seemed to have occurred overnight. She would worry about things compulsively and could barely finish a school day without crying in class because of "bad thoughts". We took her to a psychiatrist, and one night, while my husband was taking a turn trying to calm our screaming child, I was reading a book about children with anxiety. I came upon a small paragraph about PANDAS and it said that if the symptoms seem to have come on overnight, it may be PANDAS. Her phsyciatrist did a test for strep antibodies, which was pretty high, and she had not been treated for strep in a very long time, if ever, so he prescribed a round of penecillin. Miraculously, after the 10 days, we had our same easy-going, lovely, well-adjusted girl back. She continues to sleep with a night-light, but all of her other obsessive-compulsive symptoms receded. Please get your daughter's strep anti-body count tested! Good luck to you and your daughter. I have tears in my eyes for you!

Heather Wright's picture

PANDAS - @ 24?

What if a child had PANDAS, but it was not tested for, detected or treated. Is is possible that the ocd symptoms would continue beyond their teen years? I am wondering if this could be true for my daughter, who is now 24, but developed ocd symptoms beginning at 5 years old.

Sheri's picture

My son started developing

My son started developing symptoms at age 4. He is 18 and still has OCD. We had him on prophylactic antobiotics for 6 months. At this stage, it did very little to help his OCD which I guess he will always have. I've read a little about intense cognitive behavior therapy where they are constantly being exposed to the thing that bother them. The constant exposure may change the chemistry in the brain in such a way that their OCD can become very diminished. My son is not willing to try this at this time. I hope he will try it sometime. In the meantime, he is on two meds and sees both psychologist and psychologist.

David's picture

Daughter with PANDAS

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

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