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


Comments
PANDAS at 3 yrs old in Atlanta
We currently have our daughter's PANDAS under control! We were lucky and caught it very early but I am fearful of the future. Anytime our daughter is sick, tired or stressed we see the OCD kicking in again. I can tell you 4 days before the tics occur and when we need to jump on antibiotics. We have kept her immune system in check and healthy, we have stopped taking her to the inflatable jumpy places or similar breeding grounds for germs. We carry antibacterial wipes and wash our hands much more frequently. We cook at home much more! She is on vitamins and anything else we find to boost her immune system. We try and save antibiotics for when we truly need them!!! We took her out of school for a year and she just started back 2 weeks ago with nothing but sniffles. Her older sister came home sick the first day of school with strep but no one else in the house got it!!!
With PANDAS being part of the Autism spectrum disorders, I have started to read more on Autism since there is not much on PANDAS. I find a good deal of correlations and some things in my daughters early years which could be indicators for her current disorder. There needs to be more research on PANDAS not just with the older children with more severe cases but also for the younger children who still have a lot of years before puberty. Too much time for my daughter's condition to worsen. There is a need for immune system testing to help "predict" and "prepare" for these types of disorders!
Feel free to contact me...I would love to hear from other PANDAS parents!
Dr. for Pandas in Atlanta?
I am not sure if my son has Pandas...but he had Scarlet Fever on My 15th and then on July 15 he had full blow OCD. Do you know of any doctors that treat for Pandas in Atlanta. My son't pediatrician does not believe in it:( I have been looking everywhere.
Thank you,
Karen
Dear Nicole Would you please
Dear Nicole
Would you please let me know the doctor who diagnosed your child and the doctor currently treating her? I live in North Atlanta and have had issues finding someone who specializes in this. She was originally thought to have a mild form of autism, then was told it was OCD. I don't know if it is PANDAs but because strep has run rampant in our house, I am thinking she needs to be checked for this.
Any help or direction is greatly appreciated!
Hi, I was wonderng if you
Hi, I was wonderng if you could refer me to your pediatrician or whomever treated your children. I am also in the Atlanta area and I've had a hard time finding anynone who will recognize PANDAS with merit! Thanks.
Nicole -- PANDAS doc in Atlanta?
Just read these posts. Nicole, if you see this, could you share the name of your doctor in Atlanta? I have a son with PANDAS characteristics but would like to go to a doctor who has treated it before. Thanks!
PANDAS doc in Atlanta
I read a few posts from a while back of people in the Atlanta are who had some docs familiar with PANDAS. My son's tests just came back positive indicating probably PANDAS and our doc is a believer but not sure what to do next. We live just north of Atlanta. Anyone who knows of something in the Atlanta area who is familiar with treating PANDAS - - please let me know.
I have to say, it is about
I have to say, it is about time that the public is being made aware of this. I am 24 years of age. I went and tested for this disorder when I 13, about 11 years ago. I was also diagnosed with "trich" at the age of 11.
I had and still do suffer from Strep Throat atleast 2 times a year, and I can tell you that I notice the difference in my behaviors. The key is start the antibiotics right away, DO NOT WAIT! Also, I take them longer than the amount of time required to sure the strep throat so that I can be sure.
Will it go away
My son was 6 when he had a series of strep infections. OCD symptoms did not start until 3-4 months after the last infection. The OCD comes and goes seemingly depending on stress levels. (We've dealt with this with therapy.) Last year he was doing well and then he woke up one morning with sudden fears again and so had him tested and put on antibiotics. (He had no active case of strep.) He did better after the antibiotics and his titer level went down which seemed to prove that he has Pandas. He hasn't had an active case of strep in 2.5 years. My question is will the OCD go away?
My understanding is that
My understanding is that with each episode our children will only recover a small step or two each time. Once they reach puberty our children will remain the same throughout their adult life without fear of the disorder worsening. It was explained to me as a scale of 0-10, with 10 being worst case and 0 best case (non-existent issues). When our children get sick their problems can worsen depending on how sick they are/get and how quickly they recover. Every time they move up the scale they can/will recover 1-2 steps back.
she prob has Pandas. Get
she prob has Pandas. Get her Titters checked to confirm.
My 11yo son
Just like the previous posts- I too believe in PANDAS as a valid clinical diagnosis- I am a pediatric nurse practitioner and my son changed overnight the night of june 27th 2008. He had never had any issues with OCD or any psychiatric diagnosis-- he awoke at his friends house , vomited and called us- stayed the night but the next day came home vomited and c/o a sore throat. His brand new obsessions have been chemical related thus making medication administration impossible-- he also fears contaminants like soap or toothpaste ( not easy to live with) this has been the worst month of our lives-
We can't get a strep culture or blood to test( too traumatic) causes full blown panic-
I need to find a neurologist in the boston area ( or anywhere in the northeast) -- Has anyone found an immunologist with experience in this area??
Please help
PANDAS
We're in your area. My daughter has full blown case of PANDAS. Trying to get help through Children's Hospital in Boston. Feel free to email me and I'll let you know what I know.
Delaney
Mass General not Children's
I found no help at Children's. Instead, see Dr. Daniel Geller at Massachusetts General. My child is fully recovered. Our story is being told in Saving Sammy: Curing the Boy Who Caught OCD that will be published by Random House in Sept '09. It details what we went through and provides a roadmap for any doctor willing to recognize and treat this disorder. See www.savingsammy.net
Question about PANDAS
Hi,
I read your post (of August 2008) about your daughter and PANDAS. My 8 year old son probably has PANDAS, he took antibiotics 2 times and they helped. Now his tics are increasing again though he has had no strep in recent weeks.
I was wondering what your experience was with your daughter as I am trying to determine what to do next. I am emotionally exhausted from the ups and downs of this disease.
Thank you for any advice you may offer,
Kate
Delany,
Delany,
Saw your post re: PANDAS we are in the Boston area and are desperate to find someone willing to diagnose and treat for PANDAS for our 12 year old daughter. What can you tell me about this? We have been through hell and no one will listen or even believes the PANDAS theory.
My 9 yr old daughter
I am a pediatric RN, I work with kids premautre babies all day long, I have been thrown a curve ball on 7/2/08 about 1130 p.m. my daughter and I was about to go to bed, she started shaking her head several times and I told her to stop so I could fall asleep, several min. went by and she cont. to do this I told her to stop again and she yelled at me "I CANT", I started watching her with out her knowing it and realized she was not doing this on her own. I started talkin to her and having her go to her room to get a book thinking if I got her mind off of it that it would stop, but it did not. this lasted for about 45 min. I had her do some breathing tech. and she fell asleep, I thought it was over. She awoke on 7/3/08 and she told me she felt better and I went to work. I called several times that morning and she said she was okay, but by the afternoon, she was calling me saying she could not get her head to stop shaking and all she wanted to do was play! I felt like my world was coming to an end, as a nurse all kinds of stuff runs through your head about what it could be and of course its always the worst stuff! She was able to see her peds in the afternoon and after all the assessments they finaly tested her for strep, it came back positive! The peds consulted with the neuro. and my daughter was given an antibiotics, Clonidine, and Diazepam. within 12 hours of starting the medications I have seen a huge change in her tic, less movement and she is resting. Does anyone have any advise for me, I realy just want to know if the tics will stop once we clear up the strep. I cant believe that one min. she was fine and the next min. she was not!!!!
Similar onset and the tics
Similar onset and the tics stopped after 2 weeks with only amoxicillan! We have been dealing this since Halloween last year, pleas feel free to contact me.
Not recognized as a child but diagnosed as adult (my brother)
Hi,
Do you know of any cases where someone was not diagnosed as a child, but later diagnosed as an adult. My brother realized after watching the movie Matchstick Men that he had OCD. He was 27 at the time. In watching home movies from childhood we can see that he had his facial tics way back when, so its possible it came from strep. Are there ways as an adult to determine if strep is in fact still in the body? Any help would be greatly appreciated.
Thanks!
Nick
my daughter
My daughter has had ocd since she was 6 years old,we went for counselling and meds,in about a year all better no more meds nor counselling.This last march she came down with strep.....all went haywire...total obsessing over her toys could not play,crying ....a nightmare to say the least i never dreamed of this happening,back on meds,geodon,fluxotine,working so so some meds.really causing total backfire.now i wonder has anybody gone through this??? how long does it take to recover its been almost 3 months now?? or is this the way it will be?? God i hope she will recover,thanks for all replies.
PANDAS AND TIC/TREMORS/OCD
I'm a single mom of 2 and my youngest, who is nine years old has had PANDAS since last fall, and it has been a nightmare for all of us. My daughter had a sore throat last fall, and when I called her pediatrician, the nurses refused to have her tested for strep. It turns out she did have a strep infection. Within weeks, my previously healthy daughter was displaying signs of OCD, tics, tremors, and seizures. Emergency room docs declined to help, because she was not a trauma case. Her pediatrician was clueless, so I insisted that she be referred to a pediatric neurologist at Hershey Medical Center. The first neurologist, some old dinosaur who was weeks from retiring, accused me of poisoning my daughter, then accused my daughter of faking her symptoms. After he retired, another neurologist at the same practice dragged his feet. I found out more info on her illness via the WEb than I did from him. All of her ASO titers since November came back positive for strep, but the docs refused to give her antibiotics, claiming they were false positives.
In January, she had to be hospitalized due to the seizures, and she was finally given an antibiotic. Her condition did show improvement, but she kept having reoccurrences of strep plus a UTI (urinary tract infection). Again, she received antibiotics, and she improved and was virtually symptom free for about 6-7 weeks.
A few weeks ago, she had a nasty stomach virus, and now the seizures/tics/tremors are back with a vengeance. Her neurologist, pediatrician, and psychologist are all playing pass the buck, and now I'm looking for a pediatric neuropsychiatrist that believes that PANDAS exists, and is willing to help my daughter. I live in Pennsylvania, but I'm willing to travel to Hell itself if it means getting help for my child. If anyone out there knows of a physician who specializes in PANDAS, please let me know. Thank you.
PANDAS
I live in the Philadelphia area, and there is a doctor here that does treat it, at least in part. Also, there is a doctor in Chicago, and we are seeing one in NJ (but I'm not thrilled with him.) There is also a Mom in CA who is gathering together a list of all cases she can identify (I can give you her email if you contact me), and she is collecting this for a study at Yale University, as well as giving additional information about doctors. Contact me, and I will be happy to give you the information.
PANDAS
I would love this information regarding the Yale study thank you!
Wendyjambro@hotmail.com
Doctor in Chicago
Do you know of a doctor in Chicago who is familiar with PANDAS and has worked effectively with previous patients? Also I would be interested in getting any information about PANDAS doctors that the mom in CA is gathering.
Chicago Dr./Diana Pohlman
Dr. Kovacevic in Chicago has probably treated more PANDAS patients than any other doctor in the country. He is the real deal. http://www.webpediatrics.com/pandas.html
Feel free to contact Diana Pohlman (the mom in CA working with the Yale docs) personally: pohlmandiana@yahoo.com
Also, if you have questions about PANDAS there are lots of PANDAS moms/dads that will help you out at www.latitudes.org/forums
Name of Dr. in Phila. area
My high school age daughter has been diagnosed with a Non-Verbal Learning Disability (part of the autism spectrum family of disorders). I have always noticed an increase in her OCD/autistic behaviors when she had "a sore throat." When she was young, she had either a sinus infection, ear infection and/or throat infection [strep most times], almost every other month. Her tonsils were finally removed when she was 14. The ear infections have nearly stopped, but the throat infections still occur [strep]. When she is getting sick, she becomes very anxious, angry, tics, sleeps all the time, defiant, etc. We have always attributed it to her mild autism. Now, we are wondering if the PANDA syndrome is the key cause of everything. Please provide me with the name of the doctor in the Phila. area (we live in the Phila. suburbs.)!
Thank you!
Doctor in Philadelphia
Dr Catherine Nicolaides, Developmental Pediatrics, Marlton, New Jersey. She cured my son. Our story is told in Saving Sammy: Curing the Boy Who Caught OCD being released by Random House on September 8, 2008. See www.savingsammy.net
Pandas
Hi,
I just started with an MD on Long Island (he may have an office in NYC also) Dr. Chris Calapai for my son who is 6 with extreme anxiety and fears almost OCD. I am just figuring this Pandas thing out. Anyway he treats homeopathically and we just started on the treatment. If you want I can let you know how it is going. He made the strep connection not his pediatrician. Very frustrating. My name is Sue. If you email me back I can let you know how it is going. Sue
Homeopathic Strep
Hi Sue,
Our PANDAS doctor has suggested our son take a homeopathic medicine for Strep. She says she hardly ever does IVIg anymore because of it. I'm afraid to try it because it would be exposing him to strep again. Is that correct? Have you tried this medicine? Do you know if there are any studies to support this treatment? Julie
PANDAS
Hi Sue,
I know it's been awhile since you posted but I'm wondering if you have had any luck with your son using homeopathy. Are you still seeing Dr. Calapai?
Thanks so much.
Sue
PANDAS
Hi Sue,
I read your entry. I also live on LI and my son has ADHD and OCD. We had his tonsils removed over a year ago. Since then he has had two rounds of strep throat and I've been seeing a pattern that when he has the strep, his OCD behavior get worse and he starts this snorting tic. Have you had any luck with Dr. Calapai? Where is he located on Long Island? I appreciate any guidance you can give me. Thanks. Michele
pandas
Can you let me know how the homeopathic treatment is going?
pandas
Hi Sue
I saw your post regarding pandas. I live in NY in Queens and have a 5 year old son with pandas. I was wondering what doctor you use and how he has helped you. I would appreciate any input you have.
Thanks
Mary
Pandas
Hi Sue,
I read your email & I live in Long Island and have been for two years trying to figure out what is going on with my now 6 year old son. I would like to know what your son is being treated with. My son was diagnoised with ADHD & OCD and we just started treating him with meds about 3 months ago. I am still so nervous that I'm not doing the right thing. Last year when we went to the neurologist he had blood work done and his ASO titers were 478. No body was concerned and said that he was a carrier for strep throat. I had done my own research and found PANDAS and my son showed all of the signs but the doctors didn't know about this and said this was not it. We did not use medication for the ADHD & OCD because I just felt he was to young. Until, three months ago when the symtoms got worse & i can never figure out why some weeks are great and others are just so bad. He was unable to focus at school and I just felt maybe we should try the medications. So that is what I did. He started having headaches and frequent urination. I couldn't believe how much he kept going and he said he kept feeling like he had to go. I took him to the peditrican to make sure he didn't have an infection and also mentioned the headaches. She said no infections and to mention to the neurologist about the headaches. Anyway, I went back to the neurologist to go over how the last three months were on the medications and we did see a change but not a huge one. The anxiety was a little better but still had weird behaviors. She did some bloodwork and I told her about PANDAS again and she said we would retest the ASO Titers. Well, I received a phone call yesterday that the ASO Titers were now at 1178. I'm not sure what to do. They do not know anything about PANDAS and I feel that this is what my son has and I'm not sure if I'm giving him the right medications. He has not been on any antibodotic and should he be? I've been struggling with this for two years and it is very frustrating. I would love to try a new approach and I saw that you lived in Long Island and knew of a doctor. I also live in LI. If you have any advise, I would love to hear it. Thanks for listening.
Cheryl
Pandas
Did you ever find a doctor on the Island to help? We found one in NJ.I am looking for one closer.
Find a new doctor!!! We
Find a new doctor!!! We have been lucky with ours but we dumped the "best" children's neurologist in Atlanta because they did not agree with this diagnosis and now we have it under control for the time being. You have to have someone who believes in you, your instincts count! Stand up for your son and what you think is going on! Good Luck!!!
Hello, Could you pass on the
Hello,
Could you pass on the name of the doctor you are using? I hope your child is going well.
Thank you,
Laura
Please let me know what
Please let me know what Doctor you are seeing as my daughter is having some ocd issues after being diagnosed with strep this past Tuesday it just came out of know where one day she was fine the next she is having bad thoughts and counting all the time. Thanks for any info you may can give me.
Tic Disorder? PANDAS? Tourettes? HELP
I accidentally replied to CALIFORNIA and I hope he/she can help too but Nicole, can you let us know who you see in the Atlanta area? I was born and raised in Atlanta and now reside in Suwanee/John's Creek area.
WE HAVE TRIED EVERYTHING from diet to excercises to chiropractic and now we are looking into the Brain Balance Center in Suwanee as we saw an amazing article in the Atlanta Magazine. http://www.bbcenters.org/ which deals mainly with Autism but also my son's issues.
I came across your post after having a tough vocal day with our 6 year old son who is just an amazing boy all around! He really gets going when TV or video games are on with throat clearing and a ENNNNN ENNNNN noise so today, being a rare inside snow day, we heard it non stop! We are very open with him about it and let him know it's ok to make the noises we don't mind but if they are bothering him to let us know and we will go do something to clear his mind etc...
I can tell you that he really seems to have issues when we have viruses among the five of us (he has two sisters 5 and 8). Everytime we are in a waxing period my wife goes to get strep test and they are positive. He gets on the pink penicillin antibiotic we always see a waning almost immediately (other than when the Sony DS or TV's are involved). Anyway, our Doctor here in the John's Creek area just gives us a blank stare when mentioning PANDAS and doesn't agree. We would like to look into it some more but are just so worn out and defeated all the time really need some direction. After seeing your post is gave me some hope.
Please let me know who you see in the Alanta area or who you recommend in the Atlanta area ;-)
THANKS!!
Kinser's Dad---- Sean
Who is your doctor in Atlanta
We are just north of you in Gainesville and were referred to a neuologist who is referring us back to a infectious person.
Who is your current neurologist?
Just wondering.... who is your current ped. neurologist in the Atlanta area?
My son is 9 years old and has had PANDAS symptoms for almost 7 months now.
We went to our first neurologist appointment yesterday with Dr. Gerald Silverboard who is "on the fence" regarding PANDAS. Most of the other neurologist we tried to get into did not have any appointments for months out.
Thanks for your help... appreciate it.
Hi....I also live in
Hi....I also live in Pennsylvania and am dealing with PANDAS in my two boys. What part of PA do you live in?
PANDAS, OCD, ADHD
My son has been having PANDAS episodes for five years off and on from exposure to strep and after he had immunizations. He gets tics, obsessions, compulsions, attention issues, emotional liability, and fears. His fine and gross motor skills are delayed. We are in occupational therapy for hndwriting and body strengthing. We are currently treating him with daily antibiotic therapy Omnicef, and Abilify for the emotional mood swings. This is helping him. He has not gotten an episode in several months. His tics are much improved as is his attention and emotional behavior issues. He still is scared of things and gets stuck on ideas but he is easier to get over things that don't go his way. I think he is on the road to recovery. It has taken alot of Dr's and time but he is slowly improving. Has anyone found a permanant cure? What is it? I wonder if he will need these medicines forever? He is only six. I wonder what his long term prognosis will be? How will these meds affect him in the long run?
PANDAS and OCD
I have a 15 year old son with OCD. Finally, our third psychologist has put credence to the PANDAS theory siting that one of her patients was cured from OCD by way of PANDAS. My son, daughter, and I are strep carriers. If there is a strep carrier in your family that might explain the frequency of infections. I am seriously considering having my kid's and my tonsils removed. My thoughts are that if we remove the tonsils, we remove the strep and hopefully the OCD with it.
tonsils
Hi, we are dealing with pandas again, after 6months of recovery. We are awaitng the titer blood test result. We had her tonsils taken out in in April. She has not been sick a day since. But here we are again in Pandas hell. My doctor has put her on amoxicillin. But looks like I am going to have to see who else is an expert in the area. If you kids need their tonsils out, large, snoring etc and they get tonsilitis..then otherwise I would say it does not help. What do you do if you are the carrier? I would ask a doctor though. Goodluck.
PANDAS
Hi I have just read your comment, my daughter suffers from OCD, anxiety disorder and depression she is 6 yrs old. In Dec 2007 at 4yrs old she had her tonsils removed, because of the constant infections and disturbing symptoms. Unfortunately Strep is a separate infection and has plagued her ever since the removal of her tonsils... I have had my tonsils removed also as I am a Strep carrier. This was not the answer for my family. Let me know if you have made a decision, or how you are going
PANDAS
I have 2 children with OCD symptoms that come and go. I notice that whenever they get any virus the OCD symptoms and tics seem to increase dramatically. It doesn't have to be strep. Has anyone else had any of these experiences?
Nancy
panda's
I have an 18 year old who has regressed in age but we are not sure why...could he be a candidate for PANDAS or is he too young?
Sincerely,
Ellyn
Daughter with sudden onset of OCD and anxiety
Hi! I am hoping this could be the explanation of why my fourth daughter at the age of 5 suddenly became obssessed with her stomach hurting or feeling funny and became anxiety ridden. I can name the time of day this happened as we were on a family trip and she just all of a sudden started crying that her stomach hurt and she did not want to be touched. She would not even let us touch the hotel bed she was laying on. Her pediatrician thought she might have a strept infection in her intestines due to her complaining. But nothing was ever really done at that point. She was put on antibiotics and we just dealt with the ocd and anxiety as a separate issue. We have watched her over the years gain weight to a healthy level and then the obsessing comes back and she drops the weight again and can't function normally. We were a family that was plague with strept all the time. She is now almost fifteen and we will think we have this thing kicked and then out of nowhere it will come back with a vengenence. She has currently had to withdraw from High School and has lost fifteen pounds and was under weight already. We have tried medicine which helps but never makes her better completely. We have also tried natural supplements too. I have noticed that everytime it comes on, her glands in her neck area are very swollen. She has had strept infections and has had mono twice over the years. If anyone can tell me what to do to determine if pandas is what we are dealing with and what kind of testing needs to be done, I would greatly appreciate it. Thanks you for writing this article so the normal parent can understand pandas and be able to help their child. It is hard to watch a beautiful teenager be a prisoner to this health issue and miss out on so many good years.
PANDAS
I need guidance. . .last year my son, now age 7, had strep 9 times. Despite my questioning the Doctors, and the research I did regarding his ADHD and tic disorders, I never heard of PANDAS. I just received a call from his Dr confirming he has strep again, but he has absolutely no symptoms. the test was done as a routine check at the E.N.T
is it possible that this disorder has caused my sons Tic disorder? Could it have been prevented by removing his tonsils last year? is the damage permanent? should I remove his tonsils? And lastly, what kind of doctor should we be seing about this? we have a neurologist, E.N.T, and a regular pediatrician.
thank you!!!
anne
questions
Hi, my daughter is nine and on 7/3/08 she has been dx with possible pandas, like you, no signs of strep, no sore throat no fever, playing, eating, acting normal. she started a tic with jerking of the head around 1130 7/2/08. she went from totaly fine to on three medications in one day. have you recieved any answers to your questions?? if so could you please write back and let me know what they are because they are the same questions i have. will the tics stop after the antibiotic are completed, are will she have to remain on her medications? thank you.
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