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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
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
Hi Paula,
I sent you an e-mail, privately, so hopefully you were able to read the info I sent you.
If not, I will be more than happy to post on this blog.
PANDAS
Hi...I am responding to your blog about PANDAS. As a mom, I am so very happy to hear that you are getting the help you rightfully deserve. You are well on your way to recovery and getting your life back. It has been said the earlier treatment begins the better the results. My son who is 14 just saw a specialist yesterday who diagnoses and treats PANDAS. It was said 4 years ago that my son has Tourette's. I haven't fully accepted this diagnosis, and I knew there had to be more to it, b/cl of the sudden OCD-like behavior as well. It turns out this new doctor has diagnosed my son with PANDAS and will begin treatment soon. We are not going the IVIG route at this time, but we are starting him on antibiotics just to see if there is a difference. This is where the doctor said we need to start. I just hope he is spot on about his diagnosis, and I can only hope for the best. I wish you all the luck in the world, and you'll be back in school before you know it. The best of luck to you. Keep me posted on your recovery.
Adult sufferer
I am amazed to read the overwhelming amount of cases here. I am in my 50's and have suffered with OCD all my life. I never related the strep to my condition until doing extensive research. While I don't have tics, aggression or some of the other symptoms, I am plagues with the generalized obsessions and compulsions that are impeding me socially and emotionally. Is there a possible treatment this late in life, short of a transfusion that some underwent? Anti depressants have not helped. I feel hopelessly enslaved to my condition. I'm in OC, Calif.
Thanks,
Erin
Familial history of Strep & Scarlet Fever
Erin,
I am 60 and have TS+ since I was 5. My mom just told me that I had a convulsion at the age of 2 from Scarlet Fever. After that I started acting different. The at 5 I developed tics. I spent most of my young adult life searching for answers trying to be "normal". I started taking meds in my late 20's-early 30's with success. But every neurologist and psychiatrist said I didn't have Tourettes until I moved to Baltimore in 1992 and went to see Harvey Singer at Johns Hopkins. That's when I got my formal diagnosis.
Since then I've been on clonidine, which is a first-line medication for TS. Also on Neurontin, a mood stabilizer and celexa, an anti-depressant. I completely changed my life.
I am in energy sales and see people all the time who have no idea I have TS, ADHD and extreme anxiety because the meds mask them. However, I am not telling you to take meds. The reason I'm writing this is because this is the first time I have hope of finding a true fix for the underlying problem, which is PANDAS. It also explains why I tic less when I'm on antibiotics (something I try not to take too often anymore.)
I'm going to make an appointment with a doc in Baltimore, where I live, or go to NIH in DC and find someone there. I've always been accused of ticcing for attention. Believe me, that attention I don't need.
Thanks for listening.
Take care and good luck.
Renee
Would like to be contacted please
Hi I have the same problem as the member above, please can some one contact me please.
Lee
Go to Beth Alison Maloney's
Go to Beth Alison Maloney's Face Book page for a good list of doctors or to her website.. SavingSammy.net.
Also PANDAS Resource Network has tons of info... Do Not take you Pandas kids to John's Hopkin's. Dr Harvey Singer todl us it doesn't exist! Also the tv show The Doctors will be airing an episode about PANDAS on November 1, 2011. I suggest you check it out. :)
Autoimmune
I suffer from MS, which is also an autoimmune disease. There are many hypotheses about what causes autoimmune disease, but infection is certainly a common and plausible one. Personally, I believe that autoimmune disease is sometimes one of the symptoms of leaky gut syndrome (http://www.cbfm.org/what-are-the-symptoms-of-leaky-gut-syndrome/) and can be treated, at least in part, with nutritional supplements and the right kinds of changes to your diet.
Coughing Tic?
I have been trying to figure out why my daughter has periods of months of dry coughing ever since she was 4. Have ruled out asthma and cannot find an allergy source. It all started after she had strep several times one summer. In yet another internet search for answers I just came across the PANDAS diagnosis. She doesn't have any of the more severe symptoms many of you describe. But could this be PANDAS? Did anyone else have a child who started with this kind of tic?
coughing
my son had a chronic cough and throat clearing (every few minutes). It was caused by post nasal drip from a sinus infection. it took two months of antibiotics and nasal washes with a neti pot to stop it.
coughing
Hello Teran,
My son's current doctor who is treating him for PANDAS told me the very same thing. He said that strep isn't always found in the throat. It can be hiding in the nasal passage, (and other areas), which causes the post nasal drip to become chronic, and in some cases causes tics in children. My son has issues with sinus infections, especially during allergy season. His doctor is currently checking him to see where and if he has any strep running through his body. He is currently taking Amoxicillin 3x a day for the next month to see if his tics, twitches and OCD calm down. It has been 11 days since starting the treatment, and my sons tics and movements have diminished somewhat, until he recently caught another virus while on the antibiotics. His tics seemed to have returned, but not as frequent as before. As for the OCD, these symptoms have not gone away at all since starting the treatment. I know it's too soon, but I hope this treatment works for my son. I am so very happy to hear that your son was cured with proper treatment. By the way, did your son have any side effects from being on long term antibiotics? My son is currently taking a probiotic in conjunction with the antibiotic, but his stomach is just so sensitive. Thanks!
IRecently there was a girl in
IRecently there was a girl in the news that sneezed over 1000 times a day... it turned out that it was a tic from having PANDAS. Anything is possible.
THIS IS WORKING FOR OUR SON!!
1. Our son has improved greatly! He gained back the weight and is eating again. His behavior is MUCH better when the Strep and infections are kept at bay. We believe it is due to the antibiotic resistant Strep that has developed in US meat supply. There are many articles from CBS and other sources on the study that came out last month. Please google.
2. Put your children on all organic produce and non atibiotic, non hormone meats.
3. Give them probiotics and digestive enzymes.
4. Get them on an antibiotic to hold off the Strep and other infections. The strep triggers the OCD, tics and rages.
5. See a pediactric behavior counselor who has helped families deal with PANDAS.
We moved from Kansas City area to TX. If you are in KC, please see Dr. Corinine at Diokonos. He helps with behavior and parenting strategies with PANDAS children.
Please let me know how this strategy works for you. We do not feel things will improve for our children unless they are completely taken off all processed meats and produce and dairy!!! NO HORMONES! NO ANTI BIOTICS! WHOLE FOODS INC WAS OUR GOD SEND!!
There is hope.....
My daughter was diagnosed with OCD when she was 12 by Dr. Elia. Back then (that was over 11 years ago) most of the research on OCD had been done on adults and Dr. Elia explained that at that point our options were (1) Medications (2) Behavioral Therapy or (3) a combination of both. As there wasn't much research into the long term affects of these medications in children we opted for Behavioral Therapy alone. One year later she was symptom free. We saw improvement from early on in the therapy. She went on to be a happy young women, though prone to some anxiety (but then again I know plenty of people who don't have OCD that are way worse). She graduated from college last year, Is working and living away from home in another state, has a wonderful boyfriend and no reason not to believe that she will have a happy and productive life. I feel for all the parents dealing with this right now. I know how much you are fearing for your child's future. I want you to know that although it is important to educate yourself about this disorder, sometimes you have to turn off the computer, put away the books about OCD and tell yourself that your child is not a statistic and you WILL prevail. Hang in there! Good things are ahead!!!
thanks
Bless you. I pray that we will see the right specialist who can help without alot of drugs . If we can;t erase this we need to learn to live with it without being doped up all the tme. My son is smart has a great sense of humor and is the joy of my life. He can beat this.
OCD daughter
My daughter was diagnosed with OCD at age 15. We have tried many things including vitamins and other supplements, neurofeedback, behavioral therapy. At times, I am quite convinced that she has PANDAS because she was so prone to strep in elementary school but I can not get any doctors around here to seriously consider this possibility. She has strep antibodies but the doctors say they are within the normal range .. yet she had deterioration of her handwriting and math ability along with other symptoms that seem common to PANDAS like an extreme disgust with other people's feet. She seemed to get better for a while when she was on acne medicine that was a wide spectrum antibiotic but when she stopped taking the OCD "rebounded" and became worse than ever. As it stands, she is 17 and has good days and bad days. A new therapist seems to be helping but it has only been six weeks. Anyway, thank you for the encouragement above especially about turning off the computer and believing your child WILL prevail. God Bless!
PANDAS
I'm glad I found this article. My 8 year old daughter has been showing signs of OCD for the last week, and it's getting worse. She has bad thoughts and feels guilty about everything she does. Things that aren't even that bad. She will sit for long periods of time just thinking of something that she might have done to confess to. She's very clingy and now has an obession with tornados. Everyday she will ask me the same questions, Have you eve been in a tornado? Do we have them here? Can they kill us? It's really starting to worry me. She was diagnosed with strep throat about a month ago.
My 8 yo daughter has changed overnight too.
My 8 yo had been really sick with a cold, high fever, sore throat, etc. I treated the fever at home with Tylenol and let the "cold" run its course. Her sore throat lasted a week. was just about to take her to the pedi when she told me it went away. I did end up taking her to the pedi when she complained of ear pain a few days later.
Shortly after the sore throat went away, she started with obsessive thoughts about swearing. It started at bedtime last Friday night and it has consumed her thought for the last 4 days. She feels like she needs to confess every one of these thoughts to me. This happens all day long. I am worried about her. She explains it as "I just can't take these thoughts in my head." "I don't mean them." "They make me feel bad." "They make me worry."
She also told me she blames these thoughts on her cold. She told me that she wishes her cold would go away so the swearing thoughts would go away too.
I came to the internet to research her symptoms and found PANDAS. Now I am worried. Could a throat culture even show anything at this point? (she doesn't have a sore throat anymore)
Hmmm.
8 year old daughter
This sounds EXACTLY like what happened with my 6 year old daughter last year. The crazy thing is that she also had very guilty thoughts and feelings and worried about tornadoes obsessively. She had night terrors related to tornadoes and refused to sleep alone. She would scream in her room. This was so drastically different from our well-adjusted, good sleeper and seemed to have occurred overnight. She would worry about things compulsively and could barely finish a school day without crying in class because of "bad thoughts". We took her to a psychiatrist, and one night, while my husband was taking a turn trying to calm our screaming child, I was reading a book about children with anxiety. I came upon a small paragraph about PANDAS and it said that if the symptoms seem to have come on overnight, it may be PANDAS. Her phsyciatrist did a test for strep antibodies, which was pretty high, and she had not been treated for strep in a very long time, if ever, so he prescribed a round of penecillin. Miraculously, after the 10 days, we had our same easy-going, lovely, well-adjusted girl back. She continues to sleep with a night-light, but all of her other obsessive-compulsive symptoms receded. Please get your daughter's strep anti-body count tested! Good luck to you and your daughter. I have tears in my eyes for you!
PANDAS - @ 24?
What if a child had PANDAS, but it was not tested for, detected or treated. Is is possible that the ocd symptoms would continue beyond their teen years? I am wondering if this could be true for my daughter, who is now 24, but developed ocd symptoms beginning at 5 years old.
My son started developing
My son started developing symptoms at age 4. He is 18 and still has OCD. We had him on prophylactic antobiotics for 6 months. At this stage, it did very little to help his OCD which I guess he will always have. I've read a little about intense cognitive behavior therapy where they are constantly being exposed to the thing that bother them. The constant exposure may change the chemistry in the brain in such a way that their OCD can become very diminished. My son is not willing to try this at this time. I hope he will try it sometime. In the meantime, he is on two meds and sees both psychologist and psychologist.
Daughter with PANDAS
Hello, we live in Salt Lake City, UT and I have a daughter who is 17yrs and started having seizures last year for the first time and have continued now plus have tics. We need more information and I would love to get any additional information about this and how to treat it. She graduates from high school this year and plans on going to college in Houston, TX and we are not too sure now but hopes to find a doctor, support group ways to keep her safe, etc. Please contact me if you will . Thanks David,SLC-UT
pandas, sly
David,
Hi, we moved to SLC last year and our son is having a reoccurrence of Pandas. I have searched and searched for someone here in Utah who might be able to help us and have found no one. Did you by any chance find someone when you were looking in 2011. I hope to hear from you. Preot, SLC
There is a wonderful DAN
There is a wonderful DAN doctor in Houston by the name of Arturo Volpe. We've worked with him on and off for almost 10 years. He's wnderful! Go to www.doctorvolpe.com for more info. Good luck to your daughter. Hope this helps!
PANDA OCD
Does anyone know of a doctor in Dallas, Texas area that specializes in PANDA OCD?
reply to Dallas, TX doc
Dr. Richard Jaeckle, MD is a psychiatrist on Walnut Hill in Dallas, TX. He is very familiar and treats children with PANDAS/strep. He has treated my anxiety and depression successfully with sublingual amino acids but he also administers regular prescriptions as well. It is up to the patient's choosing what they would like but I always prefer the natural route.
my son with pandas
My name is mitzi erazo and i will be try to share with you my son story but i am spanish, so ill try to write as clear possible for you all to understand me.My son has been diagnosed with pandas since 2008 and is realy hard when you see an austanding boy in school and see the diference after the diagnosis. This illness have been afected my son Janniel in school and his vehavior.After i notice as a mother my son changes ,I talk to the doctor because he was having a lots of headaches , throats infeccions,ocd and strange movements.Iam from Kissimme FL,so after severals test i ask for a neurologist to check my son.Then dr Davis in Orlando FL sent my son to a blod work and finaly he found the turetes level hight and the antibodies realy hight,the were in 1,092 this is verry hight.
Now I know what is happend to my son ,Janniel is 10 years old ,he use to be an oustanding in school now he is strouggling in school so I went to his school and he his in medical 504 program and with help he is doing well but is realy hard at home my son is suffering constantly "ocd " AND A lots of ticks.Sometimes he said to me "momy why I can control myself i dont understand why i have to bite my knuckles and i dont understand why I get so mad for little things". Janniel argue to much with me and his brother is hard to make him understand,he gets insecure a lots of time he make me check the hause ,to se is the door and windows are close he think some time that he is not supose to be in this world he scream sometimes when he get mad,is realy hard to see my son like this because he was a verry quiet and calm little boy. Thanks for listen to me
mitzi
is someone want it to help me
please e-mail me .
Hi Mitzi, My son too sounds
Hi Mitzi,
My son too sounds like yours. His name is Nick, he is 16 years old. He was just recently diagnosed with PANDAS. He has severe OCD - extreme fear of urine. There is a doctor in FL that I've heard is really good.
Nick too was a really good student. He had all A's in 8th grade. That was the last year he attended school. He is now in the 10th grade, being home schooled by the state of MI and in struggeling each and every day. I DO feel your pain. It is awful to watch your child change and hurt so much. Has he been put on an antibiotic? Please write back if you have any questions. Check out Dr. Tayna Murphy in FL. Best wishes to you and your son.
Kerrie
Answer for Kerrie about Pandas
Hi Kerrie
This is Mitzi again, it`s been a little while since last time we wrote in here. I hope your son is doing better now. My son now is 11 and he still sufering tics and (OCD`s) desorder. I have news for you; Dr Ronald Davis his neurologist here in Orlando Fl, sent my son to Dr.Murphy in Rodman Research Center in, Stpetersburg Tampa because he fail third grade because he din`t pass the FCAT, due to the tics disorder. When they test my son, his ISO-Srtep-B test came back with 1,996 as a result. Dr. Davis told me that he neded more help because he though that he also had Tourette. I had some discussion with the Oceola County Board of Education about what happend to my son, and they desire to give my son some test again in third grade. He passed all test with high score so he was moved to fourth grade where he belonged. All these happend while he was with Dr. Murphy. She putted my son in a research, to test a madication call Abilify and while he was in that treatment he did great in shool, so he icrease his grade by focusing more in class, his tics and OCD`s where less than before the medication.That was last year by the months from April to June, then he passed to fifh grade. But now I feel like starting all over because since he begin his 5th grade he ISO- Strep-B levels are high again he does not madication because his insurance sent me a letter that said that the medication abilify is not aproved by the (FDA) for children of his age. The Health Insurance also said that "Criteria used make decision: That request could not be approved. The member`s age is 11 tears old. per the U.S. Food and Drug Administration(FDA) gudelines, Abilify is only aproved for the treatment of Schizophrenia only in those 13 years of age and older''(Staywell letter for my son Janniel). So naow I don`t know what to do.I will find the way to cure my sone. Mitzi
OCD
Hi Mitzi,
My name is Lori, and I have been reading everyone's blog about what has been going on with their children. My son is 14 and suffering from tics and OCD for a few years now. My question to you is....did your son test positive for Group Strep B or Strep A? I ask this, b/c these are two totally different bacterial infections. I'm curious b/c I tested positive for Strep B, not Strep A (which causes Strep Throat). Strep B is found in a woman's vagina or rectum and can be passed on to her newborn with tragic outcomes. I just noticed that you mentioned your son tested positive for Strep B. Can you please elaborate, because now I'm really concerned that I may have passed Strep B onto my child and that it is not Strep A which causes PANDAS and OCD. Thank You.
Pandas
Hello, My daughter has pandas and I am seeking help and information of this condition. I was just told today that Pandas has not been recorded in children over 12 years of age, but i see your son has pandas at age 16. Would you mind sharing some information with me or even a letter to help me document this contraversy. The doctors want to treat her with therapy and ssri drugs. I am thinking that she should have ivig (intravenous immunoglobulin) Do you know of this treatment? If your son has this at 16 then my daughter may not grow out of it as the doctor suggested today. Please write back,
My respond to kerrie
Thank to respond me back i am sorry my English is so so but i will try . THanks for your answer,Tania im sorry about you too but you know what? God does not guive anything that human can resist i hope you understand.This is hard but moms like you and me make the diferense, because we are strng.Thanks for let it me know about Tania Murphy i am waiting for them, they allready callme for appoinment.I woul like to know if your son if with DR Murphy,i would like to know if they help you or anything that help me.Anyway there is no DR that attend PANDASA she is the one that deal with.I hope is working for you pls contact me Mitzi .see you soon
Young Daughter
You guys have got me worried I will be more vigilant
BIRMINGHAM, AL
DOES ANYONE KNOW OF ANY PANDAS DOCTORS IN ALABAMA, OR THE SOUTHEAST, IN GENERAL? We live in Birmingham, AL....anywhere nearby: Alabama, Georgia, Tennessee. PLEASE HELP!
Panda's Doctor in SE
We live in Birmingham, AL and have seen Dr. Daniel Kalb in Franklin, TN. I just read your post, b/c we are still in the early stages of all this. I hope you have found a doctor by now and if you did find one in Birmingham please post back.
info please
Hi. Not sure how old this post is. My son has been Dx with PANDAS n I need desperately to find someone closer to W KY. Cab u PLEASE email me @ ? Wanting info about Dr Kalb. Thank u
Still no Birmingham Doctors
I have been looking for a doctor for my son in Birminhgam and haven't been able to find anyone willing to do a pandas evaluation. He is 25 and his pediatrician can't see him anymore. I am going to take him to Dr. kalb in Franklin Tn and wondered if there was any feed back on him. I would also be interested in in knowing if anyone found a doctor here in Birmingham or if there is a recommendation for another Southeastern doctor. Thank you.
A PANDAS doc in Bham?
Did anyone ever find a PANDAS doctor in Birmingham or any other city in Alabama?
Beth Alison Maloney, the
Beth Alison Maloney, the author of Saving Sammy: the boy who caught OCD, has a list of doctors, on her Face Book discussions section, that many families have submitted to her. Also her website SavingSammy.net has many good resources. There's also the PANDAS RESOURCE NETWORK.
PANDAS Dr
I was just notified yesterday that my son might have PANDAS. He is 7 & I'm also looking for a doctor that specializes in it. I live in Enterprise.
The Probiotic Contributor
I was wondering what probiotics you are taking. My 18 yr. old son has seen improvement with prophylactic antibiotics but the cleanses and probiotics seem interesting to me.
Looking for PANDAS DR. IN NEW YORK OR CONN.
Hello Everyone:
Can anyone help me find a Doctor who treats Pandas in the New York OR CONN. area ?
I have a 22 year old son recently diagnosed with PANDAS. He has severe OCD and aggression. I would
really appreciate it if someone can help me.
Thanks, Fran
PANDAS Specialist
Hello Fran...this e-mail may come to you a bit too late, but I haven't had to research PANDAS until recently due to my son's repeated bouts with Strep. He has been diagnosed with Tourette's by a neurologist, but I now think it may be PANDAS due to the nature of his symptoms (OCD plus Tics and moodiness along with some depression as well). I found a doctor in CT who specializes in treating children with PANDAS. In fact he is thinking of possibly opening up his own Infusion Center near his office to help children with this disease. He has cured many children. He's also been on The Today Show. When all other doctors failed, he was the only one to help diagnose and treat a little girl who had problems with excessive sneezing. Her mom found this doctor, and she is now cured. Apparently the sneezing was due to PANDAS. His name is Dr. Dennis Bouboulis in Darien, CT. I have an appointment scheduled for my son in February (there is a waiting list to see him). I hope by now you have found someone to help your son. If not, you should google this doctor, and see if he is someone you may be interested in bringing your son to. Good Luck to you and your son.....Lori
Pandas
I believe if you look for a research hospital in conn. they are having a study on PANDAS. I have a son who is possible to be diagnosed this month and they kinda mentioned in passing that there was a family that was doing the antibiotic treatments and they were in conn.
GOOD LUCK
PANDAS
Dr. Harvey Singer @ John Hopkins Pediatric Neurology in Baltimore MD. Fantastic Doctor with an abundance of knowledge and understanding of PANDAS and PITAND.
Harvey Singer told us that
Harvey Singer told us that PANDAS does not exist! I would NEVER tell anyone to go to him!! Try Dr Beth Lattimer in Bethesda
PANDAS
Thank you for the suggestion of Dr. Lattimer. My pediatrician just gave me Dr. Singer's name, but warned me that he may convince me that PANDAS doesn't exist. I was hesitant, but desperate. I don't understand though how two people in need of the same information from the same doctor came out with polar results. don't want to waste my time or co-payment to be shot down. Thanks!
PANDAS doctors
Hi Fran--Google the "ACN Latitudes Forum PANDAS".
At the top of the page is a "helpful thread" where parents have listed doctors who have helped with PANDAS -- Dr. Schulman is in NY, though I do not know anything more about her and have not seen her. Schulman has some PANDAS videos on YOUTUBE, with more info. Best to you--
Help for PANDAS + Autism
Our eight year old son was diagnosed with Autism at 2.5 years. After trying every therapy known to man, some with wonderful results, he is currently fighting severe OCD and TICS. He tested positive for PANDAS 2 years ago with our DAN doctor. After rounds of anti-biotics, steroids and finally anti-inflammatory drugs he seemed to improve. We have had success with Acupuncture and were able to decrease his med.s for the PANDAS. And now we have has a TERRIBLE setback. He is tormented by fits of OCD and TICS. We spent yesterday at the hospital for labs etc. He is currently on Anti-biotics and steroids plus more anit-inflammatory med. in hopes of helping if this is truly a PANDAS episode.
Is IVIG the best option for fighting this?
Where is the best facility?
We are looking into a place called the Rothman Center in Tampa, FL for Neuropsychiatry.
? use of rifampin
our 10 year daughter has possible panda. she has a second strep titers done that was even higher then the first. she had a slight tic that went away with 3 weeks on amoxicylin. then came back before we tested her strep titers again. the tic seems to have gone. she is on augmentin. one doctor feels that we must put her for atleast four days on rifampin and the other doctor feels we should just keep her on the augmentin for 4 weeks. has anyone else had this conflict?
? use of rifampin
our daugther has possible pandas with elevated strep titer levels (second one much higher then first one- done 5 weeks apart). her glands are very swolen and she has a slight throat clearing tic that comes and goes. three weeks on amoxicillin seemed to get rid of tic but not titer level and tic seemed to return slightly. one doctor recommending augmentin for 4 weeks , while another feels we should stop augmentin after 10 day and give 4 day treatment of rifampin. the second dr. feels very strongly that without the rifampin the symptoms will return. does anyone have any experience with this drug or course of treatment. thank g-d our daughter is only showing traces of ocd thinking and anxiety for which we just started counseling. thanks