PANDAS: A link between strep throat and OCD
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
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01/18/2006, from a Reader on the Web MY PATIENT AND I THANK YOU FOR A VERY HELPFUL PAPER. DR. VTS |
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
Tourettes and tonsil removal
After reading this "article " I wonder if removing the tonsils, of a person with Tics or Tourettes syndrome,get some ease from
the Tics.Do you know if there is any infor or publishes articles on this.If yes please let me know how I can get the information.
Thank You !
PANDAS Doctors Lists
If you need a list of DOCTORS helping with PANDAS the following web links will help.
http://www.latitudes.org/forums/index.php?showtopic=3928&pid=35170&mode=threaded&start=#entry35170
(this is a parent generated list)
www.pandasnetwork.org
(send them a request for doctor's name in your state)
www.savingsammy.net
(send Beth Maloney a request for a doctor's name in your area)
Looking for Dr. in canada?
I'm looking for a Dr. inc Canada that might be able to help our little girl who is being tested to Pandas has all the signs and symptoms that come on over night she is 9 years old. Thanks for your help.
PANDAS Dr. in PA area?
My daughter has experienced all symptoms of PANDAS with positive strep tests for the past 3 years. Once we started antibiotics, the symptoms would slowly resolve. Our pediatrician recommended reading up on PANDAS but nothing further. This year, we were really struggling to clear up the infections- we would go through three courses on antibiotics on average to finally get it cleared up. We had her on clindomiacin (?) along with rifampin (?) and still weren't able to clear it. We finally had her tonsils and adenoids removed in August. After the surgery, she broke out in terrible hives all over her body- esp legs- along with swollen ankles and wrists. We took her to the pediatrician and they tested for strep. This test came back negative, so they told us it was a reaction from all of the antibiotics. It did clear up within a few days on benedryl, but the OCD symptoms were back. I had them test her three more times over the course of a couple of months and all were negative. They finally recommended seeing a psychiatrist, who diagnosed her with OCD and generalized anxiety. I am having trouble believing this since the symptoms always resolved on an antibiotic before surgery. They are hesitant to test her titer levels since we know there was an infection right up to her surgery. I could use a doctor who knows PANDAS well and can give us a definite diagnosis. Our psychiatrist doesn't believe it's PANDAS and put her on Zoloft. She reacted terribly and we had to take her off after a week. Would you recommend a neurologist? We are in the Chester County, PA area.
OCD and PANDAS
Please trust me and take your daughter to an Integrative Medicine doctor in your area that works with children. You can go to www.functionalmedicine.org to find one. I am confident that they will correctly diagnose and truly get to the root of the problem, not just cover up symptoms with more drugs. I have a similar story to yours with my son who is 12 y.o. Conventional medicine does not have the answers....trust me.....it has taken me 12 years to get where I am now. My son has OCD, severe anxiety, ADHD, and Epilepsy. He is spinning out of control and just tested positive for PANDAS as well as many other body systems and nutrients that are out of kilter. These doctors are truly like a medical private investigator and WILL get to the cause of your child's problems. We are working with antibiotics now as well as many nutritional supplements to boost up his brain health. I wish you all the best and hang in there.....there IS a cause for these problems.
Dr Josephine Elias at
Dr Josephine Elias at Childrens Hospital Philadelphia Pa
pandas dr. in pa.
i live in the philadelphia suburbs. i would be happy to pass along all of the info i have gathered over the last few years. i appreciate your frustration with drs. who do not believe in pandas. been there!(yes, even at chop)to keep things simplified ,i will tell you where we have had some success. my son has severe ocd. we have established definate patterns to his constant and chronic strep infections(one requiring hospitalization for few days)and ocd excasserbations. he also had been treated by our c.h.o.p. neurologist with the typical ocd meds and had a terrible neuropsychiatric reaction. we were referred to dr. christopher lam. he is a psychopharmacologist. he was the first person to listen to me when i insisted there was a pandas issue not being addressed. he actually asked if we had seen the pandas expert at chop, dr. josephine elia. funny how neurology didn't mention the existance of such a physician after my repeated requests to explore this path and my familiarity with swedo's work.(i even emailed her research assistant begging for direction a couple of years ago.)we consulted with dr. elia and she did offer us plasmapheresis therapy for my son. unfortunately the chances of it having therapeutic benefit after such long exposure to strep antibodies, is markedly decreased. it is still an open door for us, however we chose a more promissing treatment. dr. lam referred us to the national institute of mental health for a riluzole study in children. dr. paul grant is conducting the study. this is the same group who did the pandas research. the good news is, my son is responding to this treatment. he has been on riluzole since aug. 2009. he seems to be a "late responder", but he is responding. glutamate is the targeted neurotransmitter. there is so much evidence supporting this, and the area of study has exploded!
dr. christopher lam is at the children's hospital of philadelphia.
dr. josaphine elia is at chop as well.
dr, paul grant is at the nimh in bethesda, maryland.
feel free to contact me if i can offer more info.
good luck with finding the best treatment for your daughter!
kelly
PANDAS doctor in PA
Look on the website: PANDASnetwork.org for A LOT more information. Also, if you contact me at: tposner@NYatot.com, I can give you more personal info, and names of doctors, research, etc. (haven't found anyone in PA, yet, but certainly would like to.
underarm pain
Has anyone experienced their child having underarm pain or problems with tight clothing, during an active time of PANDA, or when a child has strep?
My son will not even put on a coat (it's winter in MN) because he cries that his arms are in SO much pain. It is heartbreaking! He had this condition previously and then it went away for 8 months and now is back full force. He currently has strep and we just found this web site. Could it be this?
Thank you.
PANDAS
My 8 year old daughter has recently began showing signs of PANDAS. I have an appointment with her doctor tomorrow, but I am concerned that she won't listen. Does anyone know a doctor in Kentucky that has dealt with this?
On October 7, 2009, after a
On October 7, 2009, after a couple of days of fever, my 8 year old son was diagnosed with Type A Influenza. Exactly one week later on October 14th, he suddenly began crying constantly, confessing things, and having obsessive thoughts. I became very concerned, being as though on Tuesday he was fine and on Wednesday things drastically
changed. This behavior continued and I brought him to a therapist. The therapist told me that he had OCD and that it was more than likely caused by “an emotionally traumatic event.” I also brought him to his pediatrician, because I felt like there had to be a medical explanation for this. This doctor told me the same thing as the therapist. There were no changes in our family, home, or school life that would constitute an emotionally traumatic event. Over the past year, he has had strep throat a couple of times. Could this be PANDAS????
My son is an intelligent, humorous, fun-loving, polite, honor roll student. He is now suffering in school, crying before school, taking days to complete short assignments, refusing to answer simple questions, and is unable to make any kind of decisions. He has also been very scared and worried about everything, from getting in trouble to ghosts in his room.
I’m not sure what steps I need to take in order to make this better. We live in Southwest Louisiana. Any suggestions??????
Is it PANDAS? Need a doctor in Iowa
I have severe OCD and developed it as a young adult almost overnight. Am very interested in finding a doctor in Iowa that will be open minded enough to test for PANDAS related OCD. Can't get my family doctor to believe in such a thing and am so frustrated. I would drive out of state if I could get info about doctors in neighboring states. Please help.
I found this doctor in
I found this doctor in Chicago.
I hope he can help .
http://webpediatrics.com/practice.html
I heard about this on the
I heard about this on the morning news. It made a lot of sense. I am lucky in the sense that my OCD is I guess, what you would call on the lower scale. During stressful times it becomes worse. AT various times in my life is takes different forms from counting to picking etc. My therapist didn't even believe that I had OCD because I do function fairly well. I am 34, and as a child had continuous strep ear and throat infections from the ages of 3-10. To the point that my balance is damaged from the strep ear infections. I also have anxiety/depression probably caused by low serotonin. For most of my life I have had a lot of my life I have had a lot of shame about not being able to just handle it, stop the behavior, or feel better. That somehow it was my fault that I couldn't handle things the way other people do. Knowing that there may be explainable medical reasons, help me to be more forgiving to myself. That is why this research is important. So kids growing up don't blame themselves any more than someone with asthma or some other medical condition they did not create.
rheumatic fever
My mother was autopsied upon my request as a result of being morphined to death by a hospital. The autopsy showed, that though old, she was a basically healthy person except for scarring of her heart valves, which the forensic pathologist attributed to rheumatic fever. Rheumatic fever is caused by strep.
My mother had outbursts all her life, sleep problems, sustained anger and fatigue. Her children never understood her harsh, quixotic nature. Learning about the wide-ranging effects of strep finally sheds light on what may have been her underlying malady.
Oh, yes...she obsessed from my childhood till her death at 97 over a number of issues. Even as school children, we realized her obsessions were not normal, but we had no control over them nor on the effects on us.
Seeking Dr in Texas
Seeing a doctor in Texas that knows and has treated a child with PANDAS. Will go anywhere in Texas if that is what it will take to see a doctor that really understands and has a lot of experience with PANDAS. Pediatrican has never heard of PANDAS, reason seeking to find someone that knows. Thank you!
Dr. In TX
Hi there. I saw your post. Check out "The Thoughtful House" in Austin. http://www.thoughtfulhouse.org/staff/. They will be very familiar with PANDAS since this infection is not uncommon for kids on the spectrum, since they have weakened immune systems. They treat this regularly. They are also well known and get patients from all over. They are MD's in bio-medicine. My son is being treated by a wonderful dr. there. Either that or find a DAN doctor - they should be very familiar with this protocol. Chances are you won't get anywhere with your pedi. Here is a list by state: http://www.autismwebsite.com/practitioners/us_lc.htm
I am going to copy and paste this message for the other couple of people that asked for dr.'s in TX. Good luck.
Your search
Hello.
Did you receive any response re your inquiry for a Texan physician with Pandas experience? My 9 year old son had a very rapid onset of OCD in June and we realized about a month later he had a strep infection. We cannot seem to get his ASO levels down and he seems to be going through another increase in his OCD behaviors right now. I'm in Kansas City and my pediatrician as well as the infectious disease docs here at Children's Mercy don't buy into the Pandas connection.
I do have family in TX and am willing to travel to get help.
Any info you can provide is great!
PANDAS dr. in TX
Hi there. I saw your post. Check out "The Thoughtful House" in Austin. http://www.thoughtfulhouse.org/staff/. They will be very familiar with PANDAS since this infection is not uncommon for kids on the spectrum, since they have weakened immune systems. They treat this regularly. They are also well known and get patients from all over. They are MD's in bio-medicine. My son is being treated by a wonderful dr. there. Either that or find a DAN doctor - they should be very familiar with this protocol. Chances are you won't get anywhere with your pedi. Here is a list by state: http://www.autismwebsite.com/practitioners/us_lc.htm
Good luck!
Pandas
My son was diagnosed with pandas 2 yrs. ago. He had a long bout of tics his first year, few months second year and this year its been a few weeks in July and it seems like a new one is about to begin. Does anyone know any doctors in Texas that treat children with Pandas? Please let me know!!!
OCD and STREP
I have a friend with OCD and wonder if someone could please send me more info as to how to get a doctor that understands this strep and ocd connection. Also the news cast that recently showed a segment on a 19 yr. old who had OCD and found out it was caused by strep. He is now well and going to college after treatment. I think this was aired on a news show with a doctor the weeks of Sept 7th though Sept. 22. Possibly the Denver news stations.
My son will be tested
My son will be tested tomorrow Oct. 26 for antibodies. Sure he tests positive. He has ocd and sleep problems along with bowel problems. He cannot keep a job. Had beta strep when he was born, pandas were also diagnosed. I sure hope my son can start a new life. Will keep posted.
my son
When my son was at the beginning of his fourth grade year he came down with a virus. He was sick with a fever for one week, I took him to the doctor asking them to check for an infection. They said there were no signs of infection and that the virus would have to take its course. He was back two or three weeks later with strep and then put on amoxicillian. He then continued to be sick with stomach problems and lots of diarreah. This went on for weeks until the Doctor tested his stool and we were told he had giardia. He was put on another anti-biotic. This helped. A week later, my son could not go to school one morning. He told me he was too sick when he was at school, he was extremely nervous, sweating, having a fast heartbeat, and stomach aches. He was having severe panic attacks. This was six years ago. He is not much better, we have to home school him. He very rarely leaves the house, and he gets very little relief from his anxiety. He was a great student, who played baseball and hockey, had many friends. Is it possible that my son could have PANDAS? Is it possible that he could come out of this horrible life that he lives? We live very close to Boston, and would appreciate any information on who we can see for a PANDAS diagnosis? Any help would be appreciated. Thanks.
pandas
I am going through the same thing with my 16 year old.
He had surgery for a severely broken ankle in August 2008.
He started 9th grade on crutches and soon refused to go to school. He, also, was very active and had lots of friends.
Now he just refuses to go to school and gets very anxious.
His strep blood levels were over 800 in May and I am waiting for results of more blood work that was done on Friday. He was going for his 1st degree black belt in Karate, played basketball, cross country, baseball, and golf. He was, also, a sponsored motocross rider. This seems so crazy...looks like he'll be tutored or I'll be teaching him at home...there has to be an answer...these wonderful children just changed over night...I've seen so many doctors that my head is spinning and we are getting no where....he was put on zoloff 7 months ago and there is no change so I know it is more than regular depression...he was treated with amoxicillin, but I've heard that undertreated strep can cause this...he now developed a rash and I think I'll have them get me an appointment at Children's Hospital in Boston and, hopefully, he'll get the treatment he needs or at the very least, a diagnosis...did you have any luck getting a diagnosis? His school suggested Pandas, but nobody in the medical world is listening...I'm very frustrated as I had to have him repeat his freshman year of high school and this year isn't any better....I'm thinking he picked up a virus when he broke his leg because they left the wound open to heal to avoid another surgery to take pins out...please let me know if you found any answers..I'm at my wits end and don't want to see him throw his whole high school years away...he went from being an honor roll student to failing 9th grade...I don't get it and I don't understand why nobody can figure this out...
thanks for listening
Cheryl
Another mom suffering with an OCD child.
I am very interested to find the same information out. I have been looking for someone who may understand what we go through on a daily basis. I would love to talk to you about this.
Thank you,
Deborah
PANDAS
I too had strep & mono as a child. I am 47 years old & have had OCD for many years now. I would like to find a doctor in Oklahoma (preferably Oklahoma City). Does anyone know of one?
I am in desperate need of
I am in desperate need of answers regarding PANDAS. I am in St. Louis, and I'm hoping you know of a Doctor in the St. Louis, or surrounding area, that has some knowledge of PANDAS??
In October of 2008, shortly before our Son turned 8 years old, we suddenly saw his behavior change and he developed a shoulder "tic", along with these horrible "sleep episodes" (I've determined they were in between sleep walking and a night terror because he was extremely frightened and he could some what communicate with was during these episodes that lasted for 20-30 minutes). He had no signs of strep throat. School had just started at the end of August and we thought the behavior/tic were related to the new school year. So, we waited several weeks to see if the behavior/tic would subside.
Well, everything worsened, and we took him to the Pediatrician in December 2008. She looked him over and said he seems to look fine, but decided to do a rapid strep test, because strep can sometimes cause tics. It was positive, and he was given an antibiotic. He seemed to slightly improve about 5 days after started the antibiotic. Then, 12 days into the antibiotic (with only 3 doses left) all the symptoms were back and much worse. He finished the antibiotic, still no better, so I scheduled an appointment with the Pediatrician. In the mean time, he was so anxious, scared, and would not leave my side. He followed be throughout the house. He started seeing and hearing things "that were not there". I was frantic and I started doing some research on the Internet. That's when I found the PANDAS website and these symptoms:
ADHD symptoms (hyperactivity, inattention, fidgety)
Separation anxiety (Child is "clingy" and has difficulty separating from his/her caregivers. For example, the child may not want to be in a different room in the house from his/her parents.)
Mood changes (irritability, sadness, emotional lability)
Sleep disturbance
Night- time bed wetting and/or day- time urinary frequency
Fine/gross motor changes (e.g. changes in handwriting)
Joint pains
Our Son, HAD a sudden inset OF ALL of the above symptoms, and a positive strep test, a tic, and OCD tendencies. I printed the information I found and mailed it to his Pediatrician, along with a note explaining everything. (Our Son was also extremely sensitive/emotional and I didn't want to discuss all if this in front of the pediatrician during his appointment). A few days later, he goes to his 2nd appointment. The Dr. Has read the information I sent. She does a rapid strep, and he's positive. She then takes blood and the results show an elevated Strep Titer. She gives him another dose of antibiotics.
So, from October 2008-April 2009 he has had all the PANDAS symptoms. In April he is finally 100% back to OUR SON!
Our Son, does NOT have another strep infection (that we know of, since he never shows the normal fever, sore throat, ect) until June 2009, but the other symptoms are still present since October 2008. He gets another round of antibiotics...all symptoms are still present. The Pediatrician does not have any advice for me. She only gives antibiotics when there's a strep infection. She will not consider prophylactic penicillin, because of antibiotic resistance. She has no idea what my family has been going through for the last 7 months! On my own, I've took him to a neurologist, who referred him for an MRI and an EEG. The neurologist didn't seem to know what to do and said the MRI and EEG results were normal.
I started shopping at Wholefoods....our son doesn't eat anything with artificial colors or preservatives, and this helps with the ADD/ADHD symptoms. I also start an Omega/DHA supplement. He also drinks Pro-biotic filled Kefir and eats Pro-biotic filled Stonyfield Yogurt, in an attempt to boost his immune system. After about 6 weeks of this he has returned to our normal son.
From July 2009-September 2009, he does not show any signs of PANDAS.
School started in August.....5 days ago, Our Son started having a facial tic, ADHD symptoms, Mood changes, sleep walking, frequent urination. Yesterday I took him to the Pediatrician and told her I think he has strep. She asked his symptoms and looked at his throat and I could tell she thought I was crazy. His throat looked fine, he had no fever, ect. I reminded her of what happened last year and she agreed to do a rapid strep throat test. She looked surprised when she came back to tell us it was Positive. I knew it would be positive......and it starts all over again.
I am hoping and praying that the NO artificial colors or preservatives, and addition of Pro-biotics and Omega/DHA supplement to our Sons diet will help to make this round of PANDAS less severe and shorter than in the past. His school work, social life, family life, ect. are extremely impacted while he's experiencing PANDAS.
I have many questions and I would like to schedule an appointment with someone who can answer my questions, and hopefully give me some suggestions to help my son. It is my job to protect, nurture, and provide for my Son. I don't think I'm fulfilling my duties when I take him to his current Doctor. I know there has to be more than can be done.
While I don't feel, at this point, that his PANDAS symptoms are severe enough to warrant plasma exchange or immunoglobulin (IVIG), I do feel prophylactic penicillin would be helpful during the school year. Our pediatrician won't even consider that do to the antibiotic resistance, which I have told her would be a SMALL PRICE TO PAY for a PANDAS FREE child!!
Will PANDAS episodes get worse?
Will he out grow them? Or will this happen when he's 30 and contracts strep?
What else can I do to help him?
Thank you in advance for taking the time to offer any information you can.
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.
Pandas
My son is having the same issues. Did you find a doctor in the St. Louis area that specializes in PANDAS????
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
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!
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.
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
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
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?
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.
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
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.
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.
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?
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..
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...
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.
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.
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.
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.
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!
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
For skin picking you should
For skin picking you should seek the guidance of: http://www.trich.org/
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
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