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 and seizures
Hello Stephanie LA. I was reading that your daughter with PANDAS also has seizures. I was wondering if you could share a few things:
1. what kind of seizures and where in the brain are they originating from?
2. Does LA mean you are in Louisiana? Are you seeing a Neurologist there?
3. How old is your daughter?
My son (12 y.o.) has complex partial seizures (Frontal Lobe Epilepsy originating from the Supplementary Motor Area). I am confident that the PANDAS has brought on the seizure activity and we are trying to prove that theory. He has been weaning off of his seizure meds with no problems and is almost finished with them, but if he misses a couple of doses of anti-biotics (Keflex), he starts to have "auras" like he will have a seizure again, so we are weaning him off of seizure meds for diagnostic purposes. Before getting the seizures under control, he was having 6-8 a day! Of course, he had all of the PANDAS symptoms too, OCD,tics, rage, irritability. We have come a long way in a year, and he is doing sooo well today. However, he has been on Keflex 3x per day since February 2010 and I cannot get him off because the seizures return and the OCD, rage skyrockets! I don't know how others are doing it with only a 3 week course of antibiotics? But I do know that my child went undiagnosed for many years, so maybe that's why. Also, I will note that he was on Celexa for anxiety and that was a big no-no. Kids with PANDAS should not be taking SSRI's NOR getting vaccines, until this thing is under control. I would love to compare stories with you. I am from LA but currently live in the NC/SC area....near the state line. We have a fantastic, saved our lives, Internal Med Dr. treating the PANDAS (Dr. James Biddle in Asheville, NC) and a Neurologist in Winston-Salem, NC (Dr. Cormac O'Donovan). The neuro is not an expert in PANDAS but is willing to learn and most importantly, believes what I am telling him! He is collaborating with my Internal Med Dr. and we are looking for a cause to the seizure activity, to therefore guide us better in a cure. Thank you for reading!
why antibiotics for pandas?? if strep has healed..
I am wondering why antibiotics would help with tics, etc. if you are dealing with a kid who no longer has strep? My daughter (6) started having major tics within a week of a high fever. She had had one little tic and some ocd, but i wasn't concerned because my oldest went through about a year of a couple crazy tics then ended up being transient. My brother does have Tourette's, so I always worry from that angle. Anyhow, from what i understand, the antibiotics treat the strep while you have active strep (or prophylactically prevent another infection), but the PANDAS is a result of the brain being affected from the antibodies from the infection. So it's the antibodies that are causing the issues, which aren't affected by antibiotics???? Just trying to understand....my pediatrician did a throat culture a month after the fever when i was in for an issue with my son, and it was negative. I'm not positive it was strep anyway, as many kids in the area were having a fever for a day with negative strep. In either case, if the strep test was negative ONLY because it healed on it's own, then would there be any reason for antibiotcs?
Antibiotics and Tics/Tourette's
Hi Wendy:
I'm not a physician or other medical professional, so I don't have the expertise to answer that question on a clinical level, but as a mother whose daughter suffered through PANDAS, and who has done research while seeking a treatment for my daughter, from what I understand, even though the active strep infection is no longer evident, the child with PANDAS symptoms often has an elevated strep titer....My understanding is that after the outward strep infection clears, they strep is still latently present in the body, and well after the infection clears, something will trigger the latent strep to in effect attack the neurological system, causing the tics, tremors, Tourette's, etc....My daughter had a strep infection in September of 2007, started having symptoms of OCD by October 2007, started having tics and tremors in November of 2007, and by December of 2007 was having full-blown grand mal seizures.....One of the reasons I suspected PANDAS was the culprut was that during her illness, she contracted other illnesses (bronchitis, urinary tract infections, etc.), and when she was treated with anitbiotics during these illnesses, her PANDAS symptoms disappeared, but of course, the pediatric neurologists at Hershey Medical Center and St. Christopher's didn't listen to me because I didn't have an MD.....My daughter has been fine since the late summer of 2008, but I do notice that she is prone to strep infections, and one of the ways I can tell that it is strep is that she will show slight evidence of tics....Her doctor immediately puts her on a 10 day regiment of antibiotics, and she is fine. For me, even if the strep culture comes back negative, unless a blood test is done to test for strep titers, strep may be present. I wuld rather err on the side of caution and put my daughter antibiotics as a precautionary measure than take the risk of having her experience the horror she experienced before.
The antibiotics and a
The antibiotics and a tonsillectomy worked for my son. He had a severe tic during the strep. The tic completely went away and hasn't returned since the tonsils were removed.
Good luck.
Thank you for your reply.
Thank you for your reply. The pediactric neurologist put our son on the same medication, however in liquid form. Now we are trying to work with his terrible skin rashes...tried everything under the sun. The doctors now are thinking it may be a yeast issue. His colitus and glutten/leaky gut issues have retruned as well. He keeps jumping from one problem to the next (in addition to the PANDAS issues). Seeing a behavior therapist who has worked with OCD Pandas children before has helped us to hone our parenting skills with this issue! Things are starting to become more normal, which I am so thankful for. Just nervous about the return of the symptoms. He still has bouts of anger and is very tired, but the Respiridol is helping. We were able to get a liquid form from our pediatrician, so we cold control it better. The neurologist wanted us to give him .25 ml twice a day which completely knocked him out. Our peditrician gave us this form and we can give him .15 ml twice per day and it is working pretty well.
Good point about the minor illness. My red flags, however, are usually crabby behavior at school. Drew is so good natured that I pay attention when a teacher wants to mention something to us about Drew acting up at school. Then we know to check for Strep. Go to or webmed MD for more info...
PANDAS Help in Kansas City, St Louis or Columbia
Hello.
I read your message this morning and believe me, I feel your panic and desperation to help your child. We live in the Kansas City area. Our normal, funny, intelligent 8 year-old child developed OCD symptoms virtually overnight last June. We took him to therapists and eventually had him treated at children's mental health facility that is part of the Saint Luke's system bc his symptoms were so severe. THEY were the ones who knew to test for strep and had heard about PANDAS. However,they had no idea how to treat.
I can tell you you WILL NOT find support in this part of the Midwest. Our pediatrician was sympathetic, but clueless. He spoke to the infectious disease docs at Children's Mercy several times and they simply don't buy into the the theory and had no explanation for our son's continued elevated ASO levels even after infection has cleared up. We ended up flying to Chicago to see Dr. Miroslav Kovacovic. He has worked with several PANDAS patients and successfully treated our son. Our son had IVIG treatment in February and is almost 95% symptom free now. He is on preventative antiobiotics.
I hope this information helps you. Best of luck and prayers for you and your family.
E
Preventive Medicin in P.A.N.D.A.
Following a discussion in Medscape(Forum for physician),I became aware,of this form of neuropsychiatric disorder.
Having read through this forum,I agree that PANDA is an Auto-Immune disorder that involves the brain at the Basal
Ganglia and its surrounding like the Hippocampus.
Started with a Strepotococcal infection(And any other
infection whatever)it activates initialy the Innate Immunity
later the Adaptive Immunity.The symptoms encountered in this
type of O.C.D. are just expression of continuing damage to the local dentrits(The only dividing cells in the C.N.S.)
Arresting damage can not be done with Antibiotics.It can be done with Nutrients that control the Toll-Like-Receptors,
located at the cell wall.(My invention:"The Foriegn
Molecules Theory")
Dr. in Utah
My son had his first severe attack of PANDAS 1 1/2 yrs. ago. He developed severe OCD overnight. We went through 10 months of therapy for his OCD before I found out about PANDAS through the NIMH website. I mentioned it to my dr. and he was VERY skeptical. We continue to battle this illness each time someone in our house gets strep. I am looking for a dr. in Utah that recognizes PANDAS as a true illness if anyone could help that would be great!
Get in touch with Susan Swedo
Get in touch with Susan Swedo at the Mental Institute in Maryland. The last I checked with her office, your options are 1. Blood transfusion with a shunt in the neck to immediately get rid of the antibodies that are attacking the basil gangli and maybe the heart.
2. Zoloft or some med for anxiety. 3. Cognitive Behavior therapy helps a lot. (It is this part that is hard to find someone good) . You may have to travel out of state for a while. It is important to retrain the part of his brain that was damaged. 4. Low doses of daily penicillin is the most important think to prevent another episode if he gets exposed to it. Keep him away from anyone with strep. Have the school call if they are aware of strep. Also check for heart murmurs. The strep may attack the heart, also.
I work with a child who has
I work with a child who has been diagnosed with P.A.N.D.A.S. However, this child was treated at Dartmouth Hitchcock Medical Center in New Hampshire and was able to get rid of the virus over time. I believe this child was diagnosed with P.A.N.D.A.S. by either Dr. Filiano or Dr. Moen who works at Dartmouth Hitchcock Medical Center. I know this is far from Utah, but I wanted to share this with you just so you know there are doctors out there who are more familiar with this virus and may be able to diagnose your son. I wish you the best of luck with everything!
reply
Thanks for your Tips- My son is completely recovered and on prophylactic antibiotics ( it will be 2 years this summer)
He still has a rare tic... but in general he is fine
thanks for the reply
PANDAS
Did you go on the PANDAS Foundation website and ask them for a referral?
Or go on the Savingsammy website - the author of the Child who caught OCD - Saving Sammy is spearheading a worldwide awareness campaign and may have doctors in Utah to help you. Dont give up go to a OCD specialist in a big city hospital for help.
Found a Dr.
I went to Pandasnetwork.org and through this website was referred to a mom here in Utah who has had her daughter successfully treated for PANDAS by a local dr. Thank you so much for everyones help and concern.
In search for a Dr.
I am interested in finding a Dr. near me in helping me help my child. I do belive with all my heart after reading everything available that I have access to on PANDAS, that it is very possible this is what it could be.
I have a precious 10 yr old son, he had strep in 2008. It did not completley clear up with the meds. We did not catch it immediatley because he was feeling fine (so I thought). One day about a week later he said my neck has been kinda sore, I felt of his glands and they were swollen and hard as rocks, the skin on his hands was peeling. Of course we went immediately to the Dr and he hadn't fully got over the strep and had to go on another round of antibiotics.
Immediatley after that is when I noticed the tics in him. First is was the rolling of the eyes. He now goes from one tic to the other, he calles them his habits. At times they are bad, at times he goes through periods where he does really well. I think he does worse if he is in an uncomfortable situation such as in a crowd; things of that nature.
Unfortunatley I live in Western Kentucky, a very small town near Paducah, Ky. I'm faily positive I won't find any Dr's in my immidiate location. I asked my ENT Dr. about it last week and he looked at me like I was crazy. Nashville, TN would be the largest city closest to me. Its about 1 1/2 hour drive. I realize I may have to do a little traveling, however I can't afford to travel to extreme, we are by no means wealthy people.
We could travel to Louisville, Nashville or TN surrounding areas.
Any help anyone can offer would be greatly appreciated.
Thank You,
Julie Knight
jk_barger@bellsouth.net
We live in Louisville. My 17
We live in Louisville. My 17 year old year old son is currently under the care of a psychologist and psychiatrist. Next time I visit with them I am going to press them to at least try the antibiotic option even though he has had this for many years. The drug he is on, and we have tried many, aren't helping very much. I will post when I have some results.
15 Year old with sudden onset of tics
Last summer when my son was 15 he came down with a sudden onset of strange tics and vocalizations. He also became very moody and depressed and when school began, his grades suffered. I initially took him to our family internist who recommended a phychiatrist. (Initially I thought it was a delayed reaction to his grandfather's suicide 2 years prior and/or a reaction to the recent breakup with a girlfriend.)We met with the phychiatrist and he recommended a nuerologist. We went to the nuerologist and all of his bloodwork came back normal and all of his muscle reaction was good. The symptoms actually seemed to disipate for awhile but have now come back stronger. I have researched PANDAS a little bit but it seems to be a pediatric condition. I am considering a trip back to the neurologist for further testing but am really not sure what to do next. I hate seeing my son having to deal with this, although he doesn't discuss it with me, I know he must be being teased at school. He has throat clearing vocalizations and body movements I can only describe as the "heebeejeebies". I don't want him to have to be put on anti-depressants if they are not necessary. If it is OCD...then why the sudden onset...wouldn't I have seen signs earlier and wouldn't it have been more gradual? Would appreciate any advice on the next course of action.
Find a neuropsychiatrist or
Find a neuropsychiatrist or psychiatrist who treats PANDAS....when my daughter became ill in 2007, she was not diagnose until 9-10 months later, and a 3 week regiment of prophylactic antibiotics eliminated all of her tics, termors, OCD, Tourette's. She's now 11, and is perfectly fine. Best of luck to you.
pandas
Hi
I would see a FUNTIONAL Medical Doctor. Go to web sites for the society for funtional physicians etc. and they will refer you to one in your area. There are some in Houston. It very well could be PANDAS or a food allergy to gluten (glutamate), aspartate,etc. These free amino acids are flooded in our food supply. Also casein in dairy products.
Son diagnosed with post-streptococcal syndrome
My son is 17 and has always made good grades without much effort and has always been an excellent football and baseball player with a promising future of playing baseball in college. This year, his junior year, he has missed over 7 weeks of school since the beginning of school with fevers from 100 - 102 for 3 - 5 days at a time and other cold- and flu-like symptoms, horrible headaches, sore throat, etc. He was finally diagnosed with post-streptococcal syndrome by his Infectious Disease doctor. I was told good nutrition, rest when fatigued, and exercise when not is about all we can do. He is now facing summer school for three classes because of incompletes and was kicked out of baseball about 6 weeks ago. I thought his anger, depression, and other psychological issues were due to the stress of going from having so much to look forward to to feeling like there is no hope. But after reading about PANDAS, I believe the strep virus he had at some point - that wasn't correctly diagnosed - is the cause, especially since the changes in his mood started before he was kicked out of baseball. Has anyone else that has be diagnosed with PANDAS had the same issues with getting sick with fevers and constant illnesses? It happens about twice a month or more. I just know there is something terribly wrong with my son...it's like he has been replaced with someone I don't know who is sick all the time.
sudden onset O.C.D. Andrew
I have a son , Andrew who is now almost 15. At the age of 7 he developed sudden onset O.C.D. He was a perfectly normal child, he has a twin sister, Katie, One morning, as I was taking them to school, Andrew refused to buckle his seat belt. He didn't want to touch it but reluctantly did so. When we arrived at the school about 5 minutes later, he started crying as he unbuckled his seatbelt. He kept retouching it over and over, every edge every surface, every where it had touched him. When he finally managed to get out of the car, he was dragging his backpack on the ground, dragging his feet, backstepping and doing all these weird things with his feet. He made it through the door and I left for home fully expecting a call from the school nurse any second telling me something was terribly wrong with Andrew. She never called. I called the school and they said Andrew had not been down to the nurse. I explained to them what had happened that morning. I thought that whatever he was doing that morning was over. WRONG!!! When he came home from school he could hardly walk up the sidewalk and get through the back door to the house. He walked through the house swinging a towel,tee shirt,etc. so it would have the last touch. Within a week he had spiraled so wildly out of control that I brought him to the emergency room. That was the beginning of our 8 year journey through Hell. I urge any of you who have not read "Saving Sammy" by Beth Alison Maloney, to get a copy as soon as you can. Reading about the struggle she had gone through with her son,Sammy, was like reading about my own struggle with Andrew. Andrew is now on a strong dose of antibiotics and has been since Nov. 2009 and he is slowly making progress. We had been to countless doctors and therapists, tried many psychiatric meds, with horrible results,
PANDAS
my granddaughter 12 years old, has been sneezing since december 2009. her parents has had her to many doctors, no results. they are at wits end for relief for her. they contacted the dr. in cleveland that treated the girl on the today show. he gave them hope... ordered many tests and some antibotics and another one. since taking new meds ,friday and sat. there is no change yet. we pray she will get better. the next step is IVIG or as another dr suggesred haldol.there are so many side effects to haldol. i hope they decide ,if necessary with the cleveland dr. and choose IVIG worried grandmother
Looking for doctor in Kansas
Looking for doctor in Kansas City
I too have a son who was diagnosed with OCD when he was 10. He had several cases of strep and one day began having intrusive thoughts and was using hand gestures to help him get rid of the thoughts.
We are currently seeing a psychologist and psychiatrist. They have put him on Prozac which has helped. However, every time he gets sick, his OCD tendencies seem to come back stronger.
Have mentioned PANDAS to our pediatrician, psychologist and psychiatrist. All claim to not know enough about it. Would like to find a doctor willing to explore PANDAS more in depth.
Please let me know if you find a doctor in the Kansas City area who is reputable and willing to travel down a path less traveled to help these children.
In Kansas too.
I wanted to contact you about your post. I wonder if you have found any help. I too am in Kansas and have not had much luck. I have found several of us in the KC or Kansas area posting on this site. If you all are reading. Let's set up a forum to talk and share our stories. We are all so close in proximity (at least in the same state) and, if your experience with this has been anything like mine, I am sure that you could use some support right now. Let's figure out a way to exchange info and we should get it set up.
Best regards, Kari
KS PANDAS too
I, too, am in KS and was wondering if anyone has had any luck finding success with a doctor who deals with PANDAS in the KC area?
Thanks,
Rachel
Another KC mom needs PANDAS
Another KC mom needs PANDAS doc! I am also looking for a PANDAS doc/clinic in Kansas City for our 7 year old son. He developed these symptoms when he was 3 or 4 and they come and go, lasting longer each time. Need help quickly!
PANDAS
there is a dr. in cleveland who can help you. IVIG has been given to my granddaughter who ha been non stop sneezing since dec. 2009.look under ariicles about the 12 year old girl with sneezing , lauren johnson. his name begins denis B lynn johnson is a PANDAS adovacate, the girls mother
cleveland Dr for PANDAS
Can you get me the Cleveland Dr's name. We live in OH and I have not found a Dr. in OH who treats PANDAS. My son has struggled with this for 7 1/2 years.The only treatment we have been given is drugs and it really hasn't worked so well.
Thanks,
Michele
PANDAS
My son is 8 and on Thursday began developing facial tics that included eye rolling, blinking and head jerking. I began looking for information about what could be wrong after we noticed it several days in a row.
I found information on this condition not knowing that there was a potential relationship between group A-strep and the sudden onset of OCD and/or tic disorders. He had strep A within the last 4 weeks and his strep culture just came back positive again. However, his titer levels were considered within normal limits.
We have noticed an increase in his activity level, decrease in some of his writing fine-motor skills and of course the tics (which occur 5-8 times per minute). We have not noticed any OCD behaviors or some of the other behaviors that they have linked with PANDAS (separation anxiety, decline in math calculation, etc.) Our school has been trying to keep us updated about what they're seeing during the day as well.
Right now we're just watching and waiting to see what happens. He's on a course of antibiotics for the active strep infection and we're downplaying the tics so he doesn't become concerned or self-conscious about them. We have 1 more week of antibiotics, then another strep culture will be done to see if he continues to test positive.
I know that symptoms can become very severe in some children, so we're considering ourselves fortunate that his is limited to a tic disorder and symptoms that don't prevent him from daily function and academic participation.
This article was well-done...very user-friendly. We don't officially have a dx of PANDAS yet, but I am convinced this is what my son has after all of the research I have done on this condition.
Just a thought
Hi Keri,
Have you investigated the possibility of Rheumatic Fever? You might want to look into it....I've been doing alot of research as well, since my 6 year old son is going through his second case of strep in 4 weeks, along with his second dose of antibiotics and a second body rash! The first rash was more like scarlet fever, but this rash is different. The Dr. said it wasn't antibiotic related, so I'm really not sure where this one is coming from.
Good luck,
Shelley
Can PANDAS cause motion disturbances and car sickness?
My 6 year old child who has PDD NOS was very ill at Christmas and given breathing treatments and not tested for strep. His class had 5 cases of strep and some scarlet fever, 2 weeks later I tested positive for strep. His behavior in January was very OCD and very difficult behavior with his eyes looking weird (which happens at times). But whenever his eyes look like that I know his behavior will be aggressive, defiant, and difficult and yet he is typically a very compassionate, loving child. His OCD increased during this time with a very weird "scratching behavior". My question - have you heard of PANDAS causing motion disturbances or carsickness. My son has never been car/bus sick since birth and we travel alot and he has been in school for 4 years. He gets sick at least once a week since Christmas and he is a sensory kid who usually craves rollercoasters and extreme sensory input. I haven't been able to find anything regarding visual/motion disturbances but would be interested to find out if any other kids suffering from PANDAS have had this happen.
Googly Eyes
I was wondering if your child's eyes go "weird" - if it is the same as our 14th month old. She has been fine until about 2 weeks ago when we notice, usually later at night, right before bed, her eyes seem to rolls around for a second, like she is out of it, then BOOM back to normal girl again. It lasts 2-3 seconds at most.
I cannot find anything on it but I am very worried.
Tony
could it be pandas?
My 10 year old had strep at 6 months and prob. 6 reocurring strep infections after. His tics developed almost overnight. He calls them his habits. He can go months without any and then develop a new one like blinking, opening mouth over and over again, His latest was a head jerking movement that was pretty constant. He also has adhd and oppositional issues. I know a fair amt. of info on pandas from a friend who's son had pandas but is now symptom free from ivig and antibiotic treatment. Does this sound familiar to others. That adhad could too be a symptom of pandas?
pandas
Does anyone know a dr in the Tennessee area that treats pandas?
Thanks
Tennessee MD
I recently went to Dr Kalb at Cool Springs family medicine and he seemed well versed on Pandas, we shall see :)
Dr. Kalb...
Hi....
I have a 10 year old that has been diagnosed with PANDAS. We are moving to the Nashville area. How did you like Dr. Kalb? Does he do IVIG??
10 year old son
My name is Linda. We have a 10 year old son, Hunter, who was ill in December along with one of his brothers. My husband and I were out of town for the few days that the boys had fever and were ill. Never went to the doctor. Several days later we began to see changes in Hunter's behavior and attention. Teachers reported that it was as if someone had switched off a light. Took him to his pediatrician because Hunter reported that he could not focus and he was having sudden intrusive thoughts. Things then began to get worse...OCD type behaviors, lost in the hall at school, bed wetting, not able to speak or eat, odd thoughts, walking around the house with his face against the wall, crying,... We removed him from school and took him to see a psychologist. Could not explain and had not seen this type of OVERNIGHT regression before. Thought about hospitalizing him. Dr. said that it looked like Post traumatic stress. To us it looked like a nervous breakdown. Kept him out of school and made an appointment with Dr.---PhD, MD, FAAP (Pediatric Neurologist) in the Houston Medical Center. He asked us if we have ever heard of PANDAS and said that he is not stating that this is what he has because it is not a confirmed medical diagnosis and he has not seen a patient with this before. My husband and I have read what little we could find on the topic and it describes what happened to Hunter almost exactly. Hunter has been improving and has been put on Prozac, but not sure if this is the correct thing to do. (could be temporary OCD???) No one seems to be able to give us any direction on where to go from here, what to expect, is this permanent damage to his brain, or how to protect him from this again. Should we contact researchers on the subject? Are there doctors looking for people who may have experienced this? I keep fairly detailed information and documentation on Hunter. I looked back at my documentation and found that Hunter had a short "Odd" type of "episode" last year and I was able to see that this also followed an illness of Strep. (As a side note: Simultaneously, while we were dealing with this with Hunter...we were also dealing with HSP (another rare autoimmune illness followed by Strep, with the son that had Strep at the same time Hunter was ill.) Dr. --- is having Genetic testing done and has ordered 2 different titer tests for evidence of previous Strep.
Would you happen to know of current research or researchers that we could contact or studies to join? We would be willing to go or do whatever it takes to avoid another reoccurrence of this very scary illness / episode. My doctors have been nice and willing to listen, but I would rather have a doctor with experience in this and leading us rather than us leading them. Houston Area Doctors???
This response is for Linda. I
This response is for Linda. I AM A PHYSICIAN IN THE DETROIT AREA. THIS HAPPENED TO MY SON. YOUR SON HAS PANDAS. THERE ARE A COUPLE OF GOOD WEB SITES...ONE IS THE PANDAS NETWORK. THE OTHER IS FROM A DR. KOVACOVIC IN CHICAGO. IF SYMPTOMS PERSIST YOU NEED TO SEE DR. K AND HAVE YOUR SON TRESTED WITH IVIG.
GS
8 yr old w/ anxiety problems -Pandas?
When my daughter was 5 old she was diagnosed with Strep & doctor put her on medication. 3 days after given her strep meds she developed a extremeb body rash with high temp & I took her back to doc and he diagnosed her with scarlet fever & she got a stronger dose of antibiotics. I do want to make a note that that year she had strep so much the doctor/pediatrition wanted to take her tonsils out after her scarlet fever. We never ended up taking her tonsils out because after she her scarlet fever things went down hill. She started crying when I had to leave her with her daddy-which she never did. She started really struggling in school. She couldn't read simple words like she was. I took her to eye doctor & her vision suddenly went to needing glasses. Her grades continued to get worse & she struggled more. Besides school she wouldn't eat away from home because her fear of getting sick. She got very thin. She had fears of her mother or father getting hurt, so we couldn't leave her sight. She is also obsessed about things like washing hands, where she sits to eat-it went on & on. This went on for 2 long years. In between those years she was diagnosed with strep maybe 2x. She went to a psychologists for 3 months before my husband & I relocated to a different state & she was diagnosed with anxiety/OCD. was scared to death to move knowing our situation. She is now yrs old & we have lived in our new state for a little over than 1 year. She got strep within the first 4 months of living in our new state/home. Nothing new -she struggled in school. We can't get help with the schools because she's not learning disabled the schools say. She still had seperation anxiety. She
can't go to a friends home to play because of it. She still won't eat away from home. She constantly has a mental breakdown when she does homework. She also picks at herself until she bleeds-her face, ears, hands,etc. It's exhausting & I'm tired. My daughter was NOT like this. The doctors just want to put her on medication. Someone help me! I know in my heart that she has PANDAS. thanks
my daughter has been dealing
my daughter has been dealing with ocd/anxiety-panic attacks, anarexia and now goraphobia for 5 years now I truly believe she has pandas syndrome and have been trying to get someone to believe me for years. she started with a strep infection that went to a rash that peeled away layers of skin and all this happened over night right down to the separation anxiety etc. my advice is dont give up , if you believe it is pandas keep telling someone till they listen and dont take no for an answer
My daughter was diagnosed
My daughter was diagnosed with pandas at 61/2. I did antibiotics but the only real hope was ivig. She improved 70% from the ivig. She is still not at her base line yet- but she is SO much better! You need to find a doctor who will do ivig. I am so grateful for ivig- it truly helped he rso much.
Thank you so much for your
Thank you so much for your response!! Our pediatrician was able to get a phone conference with Dr. Nicolaides from NJ and Hunter has been officially diagnosed with PANDAS by our pediatrician. He is being treated with antibiotics. I have been on the PANDAS network and the PANDAS fondation. We have read so many parents say how Dr. K was able to help their children!! We have his name and number, just in case we need to take this to the next step!! God bless him and all the other doctors helping with this scary illness!! I hope and pray that your son is improving. The word is getting out...our school counselors got an email from our school district administration informing them about PANDAS!
OCD from Scarlett fever, advanced strep, PANDA from strep ears
One of our sons came home from school, in the first grade and started to wash his hands non stop. He would take a step away and then step back and begin washing and he couldn't pull himself away from the water. A day later he had a fever and then a rash. Scarlett fever. Four of his classmates in his NYC elementary school had it at the same time. We now have a younger son who has down syndrome and ASD. The Southwest Autism Center told us he had PANDA. This younger son who has continual ear problems and surgeries, also has permanent OCD with water and other things, but water is his main issue. The most common cause of middle ear infection is strep. The Down Syndrome population is OCD from ear issues, I believe and not just stubborn. Studying indivuals with Down Syndrome, may open up understanding in this field, because their anatomy is more likely to harbor strep, in their middle ears.
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.
mesial temporal sclerosis
my name is tony i had rheumatic fever at age 7 i am now 52 i have dealt with many symptoms all my life with great uncertainty- these articles give me some peace and insight into the possible origins of my epilepsy depression anxeity and vitiligo i am fortunate to live a reasonably normal life but the uncertainty made me question my own judgement
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
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