Treating a Mystery: A Disease Named Pandas May Be Causing Frightening Changes in Children

Parents say their kids have something called Pandas, and it's not cute or cuddly.

The two camps had a sit-down in 2010 that fortunately avoided fisticuffs, with Swedo stepping back from the Pandas acronym and its strict adherence to strep, and suggested "PANS," pediatric acute-onset neuropsychiatric disorder. Not to be outdone, Singer opted for "CANS," childhood acute neuropsychiatric symptoms.

By that time, however, Pandas had taken on a life of its own, having been embraced by parents who believed they'd finally found a cause for their kids' sudden bizarre behavior and by some physicians who doled out the diagnosis and treated the kids with antibiotics. In what they considered severe cases, physicians recommended courses of plasma exchange or IVIG — intravenous immunoglobulin.

Some general pediatricians, not knowing what to believe, referred suspected Pandas patients to specialists. The children referred to Ian Butler, a pediatric neurologist and director of the Division of Child and Adolescent Neurology at The University of Texas Health Science Center at Houston, may have had problems. But, Butler says, it's never been Pandas.

Candi (right) and Reagan Rhodes say antibiotics ended an eight-year ordeal.
Troy Fields
Candi (right) and Reagan Rhodes say antibiotics ended an eight-year ordeal.
Dr. Ian Butler says he's never seen evidence of Pandas.
Courtesy of University of Texas-Houston Health Science Center
Dr. Ian Butler says he's never seen evidence of Pandas.

"I've never been compelled to make that diagnosis," says Butler, who's also an attending physician at Children's Memorial Hermann Hospital and a consulting neurologist at UTMD Anderson Cancer Center, Shriners Hospital for Children in Houston and Lyndon B. Johnson General Hospital. "So I guess I'm behind the times. Or maybe I'm just a crusty old neurologist who should be put out to retirement or something."

Because of the debate over Pandas/PANS and the lack of a consensus 16 years after its official debut in the literature, there is a fair amount of confusing, and sometimes conflicting, information littering support websites for parents. One of the more popular support sites, Pandas Network, suggests that Pandas kids should undergo long-term treatment with antibiotics, and then cites as a reference a statement by the American Academy of Pediatrics that actually says the opposite. Even the National Institute of Mental Health, where Swedo is now the chief of pediatrics and developmental neuroscience, states that "there isn't enough evidence to recommend the long-term use of antibiotics" and "the treatments for children with Pandas are the same as if they had other types of OCD or tic disorders."

The Pandas Network, which estimates that at least 162,000 children in the United States have Pandas, also provides a list of 14 "leading physicians" who treat the disorder, as well as a breakdown of "sympathetic" doctors by state. The list for Texas includes only three doctors.

Despite the formal positions of NIMH and the American Academy of Pediatrics, the doctors on the Pandas Network site claim to have had success with antibiotics. And some parents swear by it.
_____________________

Looking back on it nearly 20 years later, Shreenath Doctor was sure the teenage boy he evaluated in the psych ward had Pandas.

The improbably named Doctor already had a PhD and a DDS under his belt, and now he was going for the MD. Specifically, in head and neck surgery. But he says things changed during his psych rotation when he saw a kid, maybe 15 or 16, undergo shock therapy.

Doctor noticed that the kid's throat was red, something he would never have considered as a possible link to psychiatric symptoms, but which he now believes was a clear indication that an infection was the culprit.

"Sometimes, those faces you can't forget," he says today.

Doctor, a soft-spoken Hempstead native who likes to handcraft über-fancy fountain pens when he's not fielding questions from parents throughout Texas and neighboring states who have nearly run out of hope, believes that science is on his side.

"When people tell me that there's no cause and link between infection and mental illness, I have to sit there and go, 'Are they reading?' Because it's out there," he says. Currently he's a big fan of a 2013 article in the Journal of Neuroinflammation that, in case you let your subscription lapse and missed it, reviews "the link between autoimmunity and neuropsychiatric disorders." The authors state that there's mounting evidence that inflammation may play a larger role in these disorders than thought.

He's also a big fan of sharing these kinds of articles with his patients. He encourages them to comb through the National Library of Medicine online, and he also posts relevant items on a Facebook page set up for patients.

"The more knowledge you give a person, the better fighting chance they have," he says. "It's the only hope of control a parent has."

And that knowledge is out there, says Doctor, who earned his medical degree at The University of Texas Medical Branch at Galveston and subsequently served as the chief resident in psychiatry at Baylor College of Medicine. You just might have to look beyond the United States to find it. He believes that while researchers here are stuck quibbling over what acronym to use, other countries have progressed. Whether you call it Pandas or PANS, he says, it's just part of what the Europeans call "dopamine mediated post-infectious autoimmune encephalitis"(which admittedly is not very acronym-friendly).

"The thing is, is that Pandas is really just a name," Doctor says. "What really is happening is something called an inflammation, and it's just a process in the brain that we kind of reserve for the rest of the body...it affects every organ in our body. The brain is no exception."

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30 comments
edwartfruitman
edwartfruitman

Of course the case with Panda is different. It's a new sort of disease. And well, this is not as simple as it looks when the topic comes towards learning disorders. You've been doing everything you can for your ADHD child, but you haven't noticed a change in school performance. This is what makes you feel that your child has been suffering from an undiagnosed learning disorder, and that's where the visit to doctors like me start. This is the stage where you need to pay more attention to what doctors say you. What I have found during my practice at http://southshoretms.com/ that most parents start paying more attention to their kids while visiting the doctor. As a result of this, their sitting sessions with doctors bring no fruits. 



anonymous
anonymous

I can say with certainty that PANDAS exists.  I don't want to give too many details here, but at 5 years old, I was part of the 1996 study on PANDAS at the NIMH.  I was given IVIG on several occasions, and I took an antibiotic three times a day for years.  I used to call it 'bubble gum medicine' because of the artificial flavoring (from when I took it in liquid form before I was comfortable swallowing pills).  I can't express my gratitude enough for the doctors / study- my life was changed when I got strep / PANDAS, but it was changed again through the treatment that NIMH provided at the time.

laylaemoody
laylaemoody

My son began ticking out of the blue on July 4, 2012. He was five. My husband and I were terrified and did not know what was happening. His eyes were dilated, he began having obsessive thoughts and ritual behaviors. Two weeks prior to this, he had had strep throat. It is documented in his medical records. My son was first diagnosed by Dr. K in Chicago. We have actually seen Dr. Stocco and she did not agree that my son had PANDAS, although, we felt she is VERY closed minded. We showed he video of our son ticking uncontrollably and she didn't think anything of it. 

Then, by pure fate and prayers, my husband had been having a bout with depression and all the medications he was put on were causing more problems, I found Dr. Doctor. Originally for my husband, but when I found out that he treated PANDAS kids, I knew that this was divine intervention. My son has been on antibiotics for over a year and is doing exceptionally well. The tics have gone away completely. He does have a flare when he is around someone that has a virus (like his little brother) or if he eats something he is sensitive too. Allergy shots were a particular problem and we stopped them under the advise of Dr. Doctor. PANDAS IS VERY REAL. I know first hand that prior to the strep infection, my son did not have these symptoms. I have video, and his teachers at his school, to prove it. 


Closed minded doctors have the attitude that they know that it cannot be bacterial or viral, yet common knowledge is that viruses and bacteria cause all kinds of illnesses. And that is just common sense. But until you see the transformation for yourself, then you remain skeptical. 


I have the proof. I have the before and the after. Thank God for Dr. Doctor.

Gregory150
Gregory150

The author indicated that Candi found a lot of other families with this condition as part of her research on some forums.  What forums are they referring to?

Ernest
Ernest

All very interesting. My family lore mentions a relative who died (as a child) in the 1920's of St. Vitus Dance.  I eventually figured out that it had something to do with Rheumatic fever and assumed it developed because of lack of antibiotics then to treat the underlying strep. Interesting that it's still out there in some form.

jimyoungsr
jimyoungsr

Wow!!!  I'm so sorry I have ignored Houston Press for so long, believing the MYTH that the Chron was Houston's premiere news source!!!  How WRONG I was!!!!


The obvious research and impeccable writing in this article has shown me where REAL journalism in Houston resides!!!!


Thanks for continuing to honor and responsibly practicing the profession that I once engaged!!

bolger
bolger

Parents: PANDAS is real. I don't have time to tell our entire story on this post but after 4 years of terrible OCD our son was saved after we found the book Saving Sammy. One doctor said we were nuts but a top specialist said we should check our son's strep levels which turned out to be high. After about 2 years of augmentin and a great program at Rogers hospital in Wisconsin our son fully recovered and is now in engineering school. His specialist is now a firm believer. The naysayers border on being evil. Had we listened to them our son would still be sick. Saving Sammy saved our son. We will forever be wary of the medical profession after the arrogance we experienced.

outerspace1226
outerspace1226

PANDAS is an umbrella term for a virus, bacteria, or yeast. No Dr. read anything about it in med school.

LisaM99
LisaM99

Too bad this reporter relied on information from misinformed and out of date physicians who don't treat or diagnosis PANDAS.

1) As recently as April 2014, Dr. Sue Swedo (of the NIH), at the Burlingame, CA PANDAS Symposium, recommended that children with PANDAS follow the AAP recommendation of prophylaxis for Sydenham Chorea. This recommendation is antibiotics until age 21.

2) The comments by Oklahoma City neurologist Amber Stocco frighten me. She appears to not even be aware that there is now a blood test for PANDAS, developed in her own backyard by Dr. Madeleine Cunningham of the University of Oklahoma. "Currently the panel is comprised of five different tests, four of which measure the level of circulating antibodies directed against different neurologic receptors or antigens, and one assay which measures the immune stimulating intensity of the patient’s serum against neuronal cells. The collective results of the panel of 5 tests will provide an assessment as to the anti-neuronal and autoimmune state of the patient at the time of testing." http://www.moleculera.com/

3) To learn more about PANDAS and naysayer Harvey Singer please read Neil Swidey's Boston Globe article on PANDAS: http://www.bostonglobe.com/magazine/2012/10/27/the-pandas-puzzle-can-common-infection-cause-ocd-kids/z87df6Vympu7bvPtapETLJ/story.html 


4) To interview a pediatric neurologist (Ian Butler) who has never made a diagnosis just drives home the point of how out of date most neurologists are with regard to this disorder. I have no doubt he has misdiagnosed many cases of PANDAS as Tourette's.





toryu88
toryu88

As a parent and an adult I have experienced first hand the incompetence of the medical/psychology profession.  In school as a "hard science" student of earth science, we called the psychology study track "science fiction" and rightfully so.  I had a bi polar wife who I sought treatment for under my petroleum industry employer's mental heath program.  We are talking brain chemistry here, not upset stomachs or cramps during one's period.  I sought treatment for her after charting her mood swings, on a weekly basis.  She was a rapid cycler bi polar suffer, and lithium was useless.  The PhD head shrinker accepted my diagnosis and gave her treatment.  I was shocked that he did no baseline chemistry to try and determine what brain chemicals she might have been deficient in, but instead threw drugs at her.  Follow up visits did not include any chemistry but such questions as" Are you still drinking?"  "How do you feel?" and her answers engendered such responses as, "Well take another pill." or "Well take a half  a pill."  And these quacks call this science?


From my own experience, I have been given meds for physical ailments and the results have been, 1) the gout.  2) gall bladder inflammation.  In both cases the quacks assured me that it was not the meds causing the problem, but in both cases I flushed the meds down the toilet and my symptoms disappeared in a matter of days.  Needless to say I did not go back to either of the clowns.  The med that cause the gout was pulled by the FDA a week after I was prescribed it.  Yet the Dr. and the emergency room Dr. swore it could not be the drug.  The prescribing Dr. was a Baylor Orthopedist Dr. on S. 59 in Houston.  His clinic looked like a advertisement for the drug.


They don't call medicine a "practice" for no reason.  You have to know yourself and your body.  Do any of your bother to listen to the host of side effects that come with the drugs advertised on TV?  If you did, the cure sounds worse that the disease, Statins included.  Drugging kids is the height of irresponsible parenting.  I'm 59 and we got by just fine without being sedated for OCD or the host of other excuses the medical profession holds out for parents these days that are too rapped up in themselves to attend to their kids needs.  I was in a military family and it there was an immunization out there, we got it first.  And none of us ended up autistic or retarded because of it.  It sickens me to see how excuse oriented our culture has become, looking for others to blame for the genetic throw of the dice when we conceive and raise kids. 

lisa.bloomquist
lisa.bloomquist

What kind of antibiotics was she given?  It makes a huge difference.  If she was given a fluoroquinolone - cipro/ciprofloxacin, levaquin/levofloxacin, avelox/moxifloxacin - they cause mitochondrial damage which leads to oxidative stress.  Oxidative stress chemicals can have an extremely deleterious effect on all aspects of health - including mental health.  Here is a post about psychiatric reactions brought on by fluoroquinolone antibiotics - http://www.hormonesmatter.com/antibiotics-psychiatric-reactions/

scottsdalebubbe
scottsdalebubbe

It is difficult to understand physicians' reluctance to try antibiotics when many are still prescribing them for viruses which aren't even touched by antibiotics.  It would be a simple and inexpensive enough way to "rule out" bacterial inflammation by trial -- kind of a front line intervention.   The risk is for the child to develop antibiotic resistant bacteria but it is small compared to the potential for relief. That risk is not as great as the disruption of the child's and the family's life by the brain inflammation.


Not all behavioral symptoms have a psychiatric etiology:  older people in hospitals for long periods who do not have previous signs of  Alzheimers or other brain diseases often show signs of "sundowning" and have dreams/hallucinations which they believe are real.  The dreams/hallucinations may, instead, be signs of a reaction to medication, painkillers, or anaesthetics, to continually interrupted sleep, and/or even, a reaction to the psychotropic medication they are being given for the "sundowning".

joeandlynda
joeandlynda

This article helps with awareness but is way behind in the science of this disease....it makes it sound completely speculative, whereas in reality, there is hard science now confirming this.  It's a form of autoimmune encephalitis...it's similar to rheumatoid fever but attacks the brain instead of the heart. There are numerous brilliant neurologists who could have explained it very well in this article.  FYI, other pathogens; bacteria, viruses and parasites, can also cause this autoimmune reaction, it's called PANS.  I believe clarithromycin is one of the antibiotics used, but there are several.  Steroids are also used, as this condition is inflammation in the brain.

whateveryousay
whateveryousay topcommenter

What's the antibiotic prescribed by the doctor who had success treating it?

joeandlynda
joeandlynda

Um. No. It isn't. That 's PANS you're thinking of. And the term doesn't refer to the germs or microbes themselves. It refers to the antibody reaction to the germs.

joeandlynda
joeandlynda

I don't disagree with some of your views that discipline needs to be tightened in many households, and that psychiatry is questionable in many instances, but you are not understanding this disease. The point is this is NOT a psychiatric disorder but is an autoimmune condition in the brains response to bacteria, viruses and parasites. There are psychiatric symptoms, caused by a MEDICAL issue. Are you aware that autoimmune illnesses like MS, diabetes, ect are radically on the rise in this country?? As a matter of FACT, not opinion. Do you not realize that pandas and autism are also autoimmune illnesses?? I understand vyour point about excuses, but it doesn't apply here. This is a real illness. Obviously you don't know the science behind it .....I do.

joeandlynda
joeandlynda

I don't disagree with some of your views that discipline needs to be tightened in many households, and that psychiatry is questionable in many instances, but you are not understanding this disease. The point is this is NOT a psychiatric disorder but is an autoimmune condition in the brains response to bacteria, viruses and parasites. There are psychiatric symptoms, caused by a MEDICAL issue. Are you aware that autoimmune illnesses like MS, diabetes, ect are radically on the rise in this country?? As a matter of FACT, not opinion. Do you not realize that pandas and autism are also autoimmune illnesses?? I understand vyour point about excuses, but it doesn't apply here. This is a real illness. Obviously you don't know the science behind it .....I do.

LisaM99
LisaM99

@lisa.bloomquist  I have never heard of a PANDAS child being treated with fluoroquinolones perhaps because their use is heavily restricted in children. Also, older fluoroquinolones have poor activity against strep.

Augmentin, Azithromycin, Cephalosporins, and sometimes Clindamycin (for difficult cases) are popular antibiotics for PANDAS. If other infections (eg Mycoplasma or Lyme) are identified, antibiotics may be further tailored to treat these infections.

joeandlynda
joeandlynda

Dr Trifeletti, along with other neurologists, often give steroid bursts. They are considered diagnostic. Unless the prevailing view has completely changed recently (and that may be), steroids are used.

toryu88
toryu88

@joeandlynda  My point is that first, diagnosis of psychiatric illnesses is far from exact and that most medical professionals are far from that.  I recall my 10 year old son, who when excited would get into oxygen debt, and gasp.  My not so bright wife at the time, asked doctor about it and the numbskull who had just attended a seminar on Tourette's syndrome offered up an off the cuff diagnosis that it could be that, which not surprisingly sent by overawed wife into a frantic tailspin of over-reaction.  I had to go in the next day and give the doctor a good dressing down over his idiotic behavior.  So my point based on personal experience is that Doctors and mental health professionals are less than expert on what they profess to be.  I am a scientist in my own right, and my daughter a BS/RN has on more than one occasion, said, "Dad you should have been a doctor, you know more about some of this stuff than the Doctors I work for." A little bit of knowledge is a dangerous thing and this sounds like it will result in more frivolous lawsuits and empower a legion of parents claiming that their kids have this or that, based on some marginal cause and effect correlation.  I would say that if Jonas Salk was trying to get FDA approval for the polio vaccine, it would be denied, or he would have been sued into bankruptcy by over zealous attorneys over problems related to the fraction of a percent of the kids who took the vaccine and had problems.  As a result leg braces and iron lungs would still be in common use.

toryu88
toryu88

@joeandlynda  My point is that first, diagnosis of psychiatric illnesses is far from exact and that most medical professionals are far from that.  I recall my 10 year old son, who when excited would get into oxygen debt, and gasp.  My not so bright wife at the time, asked doctor about it and the numbskull who had just attended a seminar on Tourette's syndrome offered up an off the cuff diagnosis that it could be that, which not surprisingly sent by overawed wife into a frantic tailspin of over-reaction.  I had to go in the next day and give the doctor a good dressing down over his idiotic behavior.  So my point based on personal experience is that Doctors and mental health professionals are less than expert on what they profess to be.  I am a scientist in my own right, and my daughter a BS/RN has on more than one occasion, said, "Dad you should have been a doctor, you know more about some of this stuff than the Doctors I work for." A little bit of knowledge is a dangerous thing and this sounds like it will result in more frivolous lawsuits and empower a legion of parents claiming that their kids have this or that, based on some marginal cause and effect correlation.  I would say that if Jonas Salk was trying to get FDA approval for the polio vaccine, it would be denied, or he would have been sued into bankruptcy by over zealous attorneys over problems related to the fraction of a percent of the kids who took the vaccine and had problems.  As a result leg braces and iron lungs would still be in common use. And yes, I lost a father to diabetes, and autoimmune diseases run in my family, most notably, ALS.  While ALS cannot be prevented, diabetes can.  I call it disease of the fork and plate.  Once again, parents should control what their kids put in their mouths.  Sodas?  Growing up, they were a treat, not a replacement for water.

lisa.bloomquist
lisa.bloomquist

@LisaM99 @lisa.bloomquist Thank you, Lisa M!  I am pleased to hear that the children with PANDAS aren't getting "floxed."  Floxed is a short-hand term for fluoroquinolone toxicity syndrome - a syndrome that involves destruction/dysfunction of connective tissues and the nervous systems - central, peripheral and authonomic.  To treat them with FQs could add insult to injury - to put it too lightly.  I'm glad that more benign antibiotics are used to treat the children who are suffering from PANDAS.  

LisaM99
LisaM99

@outerspace1226 Steroids are often used in the treatment of PANDAS. 

Normally steroids are not a "first line treatment". The first line treatment would be antibiotics, sometimes combined with the over the counter NSAID Ibuprofen. However, some PANDAS doctors like to use a (usually short) course of steroids later in the course of treatment to help bring down inflammation and the autoimmune process, and also, as @joeandlynda  mentioned, it can be helpful to help confirm the diagnosis, although that may be unnecessary now that the Cunningham Test is commercially available.

Due to side effects, steroids are not usually used long term in PANDAS children. Here is a link with more information on treatment and steroids are mentioned.  If antibiotics and a course of steroids are doing enough, usually the next step is a course of IVIG, or even plasmapheresis. http://www.ocfoundation.org/PANDAS/




joeandlynda
joeandlynda

Some of the leading neurologists in the pandas field treat with steroid bursts, and in fact, they are considered diagnostic.

joeandlynda
joeandlynda

@toryu88 @joeandlynda 

 "this sounds like it will result in more frivolous lawsuits and empower a legion of parents claiming that their kids have this or that"

Again, you do not understand this disease.  It's a medical condition, not a psychiatric condition, but manifests with psych symptoms.  This has nothing to do with lawsuits, it has to do with children getting diagnosed and treated properly. The only danger of lawsuits in this situation is when they misdiagnose these kids and stick them on psych drugs their whole lives instead of treating the underlying infection.   Try reading the SCIENCE on this disease.  When strep (or lyme, mycoplasma, anaplasma, viruses, parasites) trigger an immune reaction that causes sudden onset (where it didn't exist before) of OCD and other psych symptoms, it suddenly totally changes the behavior of the child.   I agree with your point about Jonas Salk, but you're the one missing the point.  If it's true that vaccinations are one of a host of things weakening the immune systems of our population (along with food supply, chemical exposures and other issues), would you rather just be lied to about that?   I think the American people should know that and be educated on how to improve the situation, not by foregoing all vaccines, but they can be administered in smaller doses, also you don't need all the vaccines they give now, it's way overkill. I'm sure it has nothing to do with $$$$     I prefer the truth, thank you, and people can make their own choices, freely.  We do not need Big Daddy government holding back information for our own good.  Also agree that Docs dont' know everything, far from it.  Most of them stick to the party line.  This disease isn't that recognized yet by Docs (except by neurologists and some educated Docs), it is being recognized in the laboratories by researchers.  (smarter and way more knowledgeable then Docs many times)

mdesselman
mdesselman

@LisaM99 here's a question -- does one need to have a positive strep test to be positive for PANDAS? My son had a sore throat and fatigue, went to pediatrician, negative strep swab (and later negative culture came back from lab) but two days later he had an out-of-nowhere bout of severe anxiety that only ended with throwing up. One round of z-pack (which I got from my doctor, suspecting PANDAS) didn't seem to do much. He developed tics and has had these attacks on and off. Docs think just panic disorder; I think something triggered this. But I don't want to be ridiculous about it -- if it's just that he has anxiety/panic, then I can deal with that and want him to get help. But if there is a viral or bacterial thing going on -- I want to treat that, not just the panic symptoms.


He responds very well to acupuncture for calming CBT has helped also. Has anyone found that Chinese medicine can be effective in treating PANDAS/PANS?

LisaM99
LisaM99

@mdesselman  not all children with PANDAS will have a positive strep swab or other clear cut evidence of a strep infection (eg 2 fold rise in strep titers). Also, consider doing throat cultures on family members to rule out a strep carrier in the household.

Sometimes strep will hide out in other locations (sinuses, skin). Other times another infection is the trigger (mycoplasma, Lyme, viruses). If a specific infection isn't identified but a child has acute onset anxiety/OCD, this is referred to as PANS. Note: one speaker at the CA PANDAS symposium (April 2014) said that 30% of her cases turn out to be CDC positive for Lyme.

Also, 5 days of antibiotics may not do much. At the recent PANDAS symposium in CA, the Stanford rheumatologist said that even simple cases can take 2-3 mo. to get back to baseline. She also said that only 14% of her cases meet the very strict research criteria of PANDAS (which includes a clearly identified strep infection, text book presentation). The fact that your child's anxiety spiked in correlation with an obvious illness is very suspect.

Depending on the severity of your son's anxiety and how he is doing currently, you may want to direct yourself to http://pandasnetwork.org/resources/providers/provider-list/  This article may also be helpful http://www.ocfoundation.org/PANDAS/ to you.

 
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