Odd Behavior from Strep Bacteria in Some Children with Autism: PANDAS

Ok this is not a pretty picture (throat of 7 year old boy with autism). Those tonsils are moderately enlarged, red and the soft palate and the uvula (“punching bag”) are swollen as well.  The child had no fevers, no difficulty eating, and apart from a huge increase in obsessive – compulsive behaviors (OCD) his parents didn’t have a clue something was up with his throat.  They Googled OCD and Autism and wound up reading a bunch of posts and articles about PANDAS.

Tonsils

After reading about PANDAS they decided to bring him into see me. PANDAS stands for pediatric autoimmnue–neuropsychiatric-disorder-associated with- Streptococcus. I’ve seen this a lot.  Children with autistic issues seem unusually vulnerable to strep in a way that triggers increased obsessive and compulsive behaviors . Essentially what happens is the body’s immune cells (already on over-drive in autism), see the strep bacteria and mount an immune response.  They make antibodies to the strep bacteria (the way we want them too), but that is where things get off track. Those antibodies cross-react with the brain in way that triggers the OCD type of behaviors.  It can also trigger tics and other odd movements.

In his pediatrician’s office he had rapid strep testing – which was negative.  However,  I cultured his throat and it was positive for Group A beta-hemolytic strep (GABHS), the type that causes both typical strep throat, as well as PANDAS.  And we looked for other biomarkers of strep: he had increased ASO and Anti-DNase B markers (immune tests for recent strep exposure).  Most likely he is a carrier – meaning he and the strep bugs have decided it was okay to cohabitate.

image

Group A beta-hemolytic Streptococcus (GABHS)

His body keeps the bacteria in check by keeping antibodies levels high – but with that protector roll, the antibodies interfere the brain and create his obsessive behaviors.

That creates a treatment dilemma: how do we get the antibodies to strep to go away?  We have some options. We could take his blood out, filter away the antibodies and give it back to him (plasma exchange or plasmaphersis). In reality that won’t happen despite a published study showing it works.  It’s just too invasive for practical application.  We could give him concentrated human antibodies, which would help take out the bad antibodies (IVIG). That works too and is practical but expensive. Without insurance coverage it can run $2500 to $8000 per dose.  Doses can range from one time to monthly depending on the response. But then we have another option. If it works it is low cost, almost always covered by insurance and not too risky.  Dr Swedo and her colleagues at the National Institute of Mental Health – part of NIH – investigated the use of long-term two antibiotics (azithromycin or penicillin).  It takes about 3 months for antibody titers to fall to normal levels and with that the OCD symptoms fade.  Of course we have to deal with keeping the gut happy with the antibiotics – that’s doable but not always easy.

If you give me a choice, I want both antibiotics for long-term stability and IVIG to protect the brain while we get the strep under control. PANDAS can affect any child – not just children with autism.

If you think you need help with PANDAS – contact us at 321-259-7111.

About Dr Bradstreet
Dr Bradstreet is a graduate of the University of South Florida College of Medicine and received his residency training at Wilford Hall USAF Medical Center. He is a Fellow of the American Academy of Family Physicians. He is an Adjunct Professor at the Southwest College of Naturopathic Medicine in Arizona. He is extensively published in the peer-reviewed literature on subjects of autism, oxidative stress, mitochondrial disorders, virology, hyperbaric oxygen, and toxicology (especially heavy metal chelation). He is trained in the the isolation and use of stem cells.

43 Responses to Odd Behavior from Strep Bacteria in Some Children with Autism: PANDAS

  1. 3Monkies says:

    A year ago I had no idea what was attacking my child, let alone how to explain any of his behaviors.
    Now a little antibiotic here a bit of antifungal there and the evil predator in his body is under control.
    PANDAS awareness is happening thanks to articles like this,and professionals like you. Thank you for pursuing the “simple” treatments for those of us who cannot IVIG.

  2. It gets trickier when you try to explain this to your child’s public school… Chances are they will not get it. OCD, hallucinations and extreme behavioral issues have been the hallmark of PANDAS for us. There’s a lot that “they don’t get.” OR “don’t want to get.” and it is very sad when as a parent you have to fight daily not only for your child’s health but for his education and eventually for his future.

    • drbradstreet says:

      This is a great comment. What I will do on this blog is create a “PANDAS for Teachers” one page brochure you can print and give them. Give me a few days and I will share it as an attachment on the site. In the meantime, we work with them patiently understanding they just don’t get it. Explain it is immunological. Sometimes it seems society has not progressed very far with its prejudices against people with brain dysfunction. No doubt we can blame the Freud for some of this. Most psychologically significant problems are rooted in underlying biological problems. We should assume something is wrong with the brain’s immune chemistry, before we toss around psychological labels. (at least that is my opinion)

      • teacher says:

        I am a teacher…is the PANDAS for Teachers brochure still available. I would like to read it. I have a child in my class with Tourette’s and PANDAS this year and we are really struggling with his violent outburst toward his fellow students. He has been suspended several times for choking other students and grabbing their private parts. Per the Ed code, there is no choice but to suspend a student for assaulting another student, regardless of the underlying cause. His parents are very upset by the suspensions, and the parents of the children he is choking and grabbing are also very upset. I am caught in the middle…I see both sides. Any advice?

      • In the older post section of the blog you can find what I have written on the subject – you may also go to the NIMH website http://intramural.nimh.nih.gov/pdn/web.htm

  3. fromitaly says:

    I wanted to thank you Dr Bradstreet on behalf of all the Italian children for this valuable article that I allowed myself to translate and publish on our website in the hope that it will serve to help those suffering from OCD and PANDAS

    http://www.emergenzautismo.org/content/view/864/48/

  4. Rachel Lu says:

    I have a 42 year old brother with what I am sure is undiagnosed Aspergers. In the past few years he has developed severe OCD behaviors. He is also a strep carrier. Is it possible to treat this in adults as well?

  5. sarah palmer says:

    I have a hypothetical question. What if my son had PANDAS but was allergic aithromycin and penicillin? Are there any alternatives that you use for people in this situation?

  6. marilina says:

    the use of IVIG for PANDAS is different from what you’re used to using it for other disorders ?????? I guess that IVIG be measured, but not only on the basis of age of the child …. or not?

  7. Melody Rhodes says:

    I am a five year old son who has had tonsillitis, three upper respiratory infections, three ear infections, and bronchitis in three month span. I have never heard of this until reading it today. He has never been this sick this often. He has aspergers, OCD, ADHD and really struggling with the OCD and aggression right now. Could this be the culprit? Thanks!

    • ABSOLUTELY. Almost assuredly this is related to strep – at least in part. The immune dysfunction is more likely greater than just strep but that can be evaluated.

  8. carmel zammit says:

    My 9 year old boy had a faecial Micobial test and they found that his streptococcus was high ….which might explain his impulse behaviour towards other children and his Teachers/Aids….which is very concerning as he has a high IQ and attends a mainstream school , however if this hitting continues I am really concerned that he will have to go to a Special School…..and it would be such a shame….what is the best way to treat Streptococcus…????so it is totally removed ….desperate Mum

    • Actually I do not think we are talking about the species here. Technically Streptococcus is a genus of bacteria which has many many members. PANDAS is only KNOWN to be associated with Group A beta hemolytic strep species. Strep in the gut is almost always different species from GABHS and no one knows if it causes PANDAS symptoms. We all have some species of strep with us all the time.

  9. marilina says:

    In the Q and A section of AO, it was said that the study of dr.Cunningham is no longer enrolling. She has reached 1000 subjects and she was told she has enough to figure things out.
    !!!!!!!!!!!!!!!!!!
    Is it true?
    we no longer provide this valuable test …..?

    • The University of Oklahoma has not approved ongoing research. Dr Cunningham may pursue a commercial lab to accomplish her work. At this time it is no longer available to us.

  10. heather says:

    Dr. Bradstreet – we are dealing with PANDAS in our 7 year old daughter. After repeated strep and ear infections in December and January, plus an undiagnosed case of MONO in Feb. we finally approached our pediatrician with PANDAS (thank you google). He was open to treatment, and put her on Keflex for 3 weeks. 6 days on the treatment and her symptoms went away (she experiences severe anxiety, minor tics, headaches, and becomes very defiant). 4 days off the Keflex and her symptoms returned. We tried again, but it didn’t work, so he switched her to Omnicef. The symptoms became manageable, but she wasn’t as good as she was on the Keflex. 21 days again, and off the symptoms returned full force. We’re back on again. Again – symptoms aren’t perfect, but they’re manageable. My question is whether or not it’s bad to keep putting her on and then off of the antibiotics – wouldn’t that just mess up her system even more? I think he’s afraid to put her on for too long, but the behaviors are really hurting our family. We have an appointment with someone with more experience, but not until July (earliest we could get). Do you think the antibiotics he’s putting her on are the right choices? Thanks!

  11. Julie says:

    My seven year old has ADHD, ODD, and PTSD and a few other borderline disorders. Every couple of months he stops sleeping (only sleeps an hour a night he’s on sleeping meds yet they don’t even help), gets violent, and loses all ability to pay any attention. After about 3 or 4 sleepless nights he gets a sore throat and I take him to the doctor, it always turns out to be strep throat. After his 10 days on antibiotics the sore throat goes away and the insomnia improves slowly but the violence takes almost another month to stop. Should I approach his pediatrician with this issue? If so, how should I approach the issue?

  12. Kathleen Hallal says:

    I went through something similar when my seven year old son first got PANDAS. Short doses of antibiotics will not suffice to eliminate the problems. We had our son’s tonsils removed (when cut open they were found to be full of strep, even though his throat tests had been negative), and he was on antibiotics for one month. Now, he takes them two times per week, just to keep him well. In the summer we are taking a break because he has less exposure to other children and the strep virus.
    I hope this helps!
    Sincerely,
    Kathleen

  13. 3Monkies says:

    After reading this post I wondered if removing tonsils would help or exhacerbate someone w/Pandas?
    Should children with intense Pandas seek removal,as a safeguard?

  14. L2C says:

    My ASD son had vocal tics after taking in VSL and HBOT. The tics went away after several month. I suspect he had PANDAS.

    What test should I give him to confirm the PANDAS?

    Are you visiting patients in Asia? I am living in Vietnam

  15. Katie Risser says:

    3 weeks ago (tomorrow) my 8 year old daughter started with OCD. I can pinpoint the exact moment.Within 3 days I was on the phone with her teacher,pediatrician,school psychologist,and child counselors.In the last 3 weeks I have seen my daughter “disappear”.She is obsessively washing her hands.She will not eat at school because she thinks her hands are too dirty.She won’t use her hands to touch anything! She is horrified of things like household cleaners,hand sanitizer ,etc. This has been the most drastic change in personality I have ever heard of.Literally,overnight. My friend informed me yesterday about PANDAS.I had her in the pediatrician’s office by the afternoon.She had blood tests and cultures done that won’t be back until next Tues.In the mean time they started her on Keflex 250mg twice a day for 10 days.She had a positive rapid strep test in March (8) months ago.Do you think it’s possible that the strep from that infection could be playing some role in this recent onset of OCD or is that too long of a time span? I am looking for ANY hope or information I can get.This has been heartbreaking.

  16. Maria Hall says:

    It is funny, the more I read the more I am bobbing my head. My son is 15 and I have noticed most of his serious behavior spikes and most assaultive behaviors have occurred just prior to his ear starting to leak green gunk….asymptomatic ear infection or the beginnings of yet another strep infection. I never put it together until recently. However, my son also has serious GI problems since he was little (awful colic, “toddler tummy” and he was very hard to completely toilet train due to the bowel problems) so I was really interested in “leaky gut” theories, and possible links to food sensitivities as a result of this. Maybe the gut disturbances are also related to the strep somehow and all tie together??

    • I don’t think the gut is GABHS (group A strep) – rather overall immune dysfunction. I find nagalase, food allergy testing and comprehensive analysis of stool helpful.

  17. Bet says:

    How can you get this to go away, I mean one can take azithromycin and one seems to be fine, and then out of the blue, it’s back again, once the dosage is stopped. I mean I’m on my 3rd round, I thought it was gone, it’s back.

    So, really long term antibiotics would work, if only, the body could tolerate them long term. I mean SSRI’s don’t work, nor do any other medications, but being on antibiotics for life is just not good enough. Therapy helps to some degree.

    Is there an antibody that can be given to counteract the strep one, that can block it in the brain. It feels horrible to be sick.

    I mean that’s the problem, you fear the germs, cause this is what they do to you, make you sick, and once you’re sick the illogical thoughts just want to hang on. This is why it’s best to maintain a safe distance, it’s like the brain is trying to protect itself from strep, go figure. I mean it’s a vicious cycle, and this does start in childhood, with the bad sore throats.

    It’s rather annoying, I mean you can ignore, but the tics are just so annoying. Plus the perception and stigma of it all, horrible.

    It’s better to tell someone look I have X psychiatric illness instead of explaining, hey I have strep and now OCD, and tics.

    People give you bizarre stares already, with that explanation, those stares only get worse. At least with established conditions you can refer to the successful person with the condition that wrote a book about it and people relate.

    That way if you say anything awkward or off, it’s like, well it’s X illness. Although some people think you do it on purpose, which only exacerbates the tics, making them much worse. I mean it’s bad enough to be sick, have tics, and then for people to pick up or mock them. I didn’t choose to be like this, just the way it is.

    I hope someone is working on better treatment, this sucks. Makes talking and socializing rather difficult at times.

    This is very annoying.

    • Way more than annoying – it is impairing and treatments beyond antibiotics need to be considered. Tonsillectomy is not perfect but has helped some. Some ENTs have pushed the envelop and started cryotherapy of tonsils and oropharyngeal lymphoid tissue. There is hope.

  18. brittany sherrill says:

    My 7 year old daughter has austism and over the last few weeks has become very destructive, tearing her clothes, throwing her shoe out the bus window, screaming and crying for no real reason. She is usually very mild mannered and well behaved. I am lost for what has come over her lately. Her sleeping habits are pretty much on schedule but she seems unusually tired for the amount of sleep she gets. Do you think this could have anything to do with PANDAS? What is the first step in figuring out what could be causing this sudden change in attitude?

    • This is so sad to hear, but this type of behavior is always for some reason – usually pain. I cannot advise you on the blog directly, but think about headaches, gut pain or another source.

  19. Liz Mancuso says:

    Dr. Bradstreet,

    I have two children on the autism spectrum. Ages 6 (girl) and 7 (boy). My daughter has OCD,

    behavioral problems, sensory issues, and is labled “Autistic” by an Autism Center I brought her to.

    Her pediatrician on the other hand refuses to note she is autistic and just puts in her

    chart “delayed”. She recently has started hitting other children (she is in special ed). However, I’ve

    seen her pretend play and have direct eye contact..So, I am very curious to see if she is a candidate

    of this PANDAS.

    My Son, diagnosed “on the spectrum” is in a regular classroom and has speech

    classes and PT. He is extremely intelligent. Much more advanced in math, reading, and writing then

    his other classmates, but socially never quite right. And cannot express his feelings and has

    difficulty with “wh” questions. Within the last year he has come down with

    Strep back to back about three times (not to mention all the other times he has had it) once we had to change the antibiotic he was on because it didnt work.

    His personality lately is what concerns me. He has become defiant, this, a child who I always

    called “angel baby ” because he never cried or got into things. A readl ggod baby and little boy. He

    however does not have any OCD patterns that I am aware of. Is PANDAS possible without the

    OCD?

  20. Heather says:

    I wrote in a year ago. We were dealing with extreme Anxiety, minor tics, OCD & defiance in our 7 year old daughter. After a horrific summer, and a new school year full of strep infections, I finally convinced an ENT to take her tonsils and adenoids. Thank God!! Her anxiety is now minimal, no more OCD or tics. Defiance is still there, but nothing compared to a year ago. Even though she had tested negative for strep right before the surgery, her tonsils were fully infected when they biopsied them. No more host, no more strep, most behaviors gone. I don’t think she’ll ever return to the same personality she was prior – but our family is finally a bit more relaxed!

  21. Debbie says:

    I hear conflicting reports about ASO and AntiDNASE titers and their relevance. My son may or may not have PANDAS as there may be other pieces to the puzzle. But, I think the picture fits – aggressive, tics, explosive. . . it seems to cycle with illness and started after an illness when he was 5. He’s been sick a lot this year – starting with strep in the fall. He didn’t have the typical symptoms so no one would do a swab, but when one was finally done, it was positive. And he was a mess. Our dr. is hesitant to diagnose PANDAS or PANS as the titers are low. I’ve read that that is irrelevant in many cases. Is this true? A dr. today mentioned the possibility of sleep apnea due to enlarged tonsils being a cause of similar issues. She also didn’t discount the possibility that strep can hide in the tonsils.

  22. Gonzalo says:

    Thanks for sharing such a fastidious opinion, post is good, thats why i have read it entirely

  23. drbradstreet says:

    I very much think IVIG is an options and I use it frequently. Plasmaphoresis on the other hand is not. I hope this clarifies it for you

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