A Rare Disease? Or No Disease at All?

The mysterious affliction is called PANDAS, in which children’s behavior changes after an illness. It’s scary, but is it real? Doctors are divided.

One afternoon in 2013, after swimming and playing outside, 9-year-old Taylor Johnson, from outside Atlanta, began sneezing incessantly. The fit lasted days before stopping abruptly, only to return months later. For a year, her violent sneezing fits came and went, to the bewilderment of a series of doctors.

For families, the diagnosis can seem like an answer to their prayers. But there’s a catch: Most doctors won’t treat the diseases — and many don’t believe they even exist.

“She was making this noise with her mouth at times 140 to 150 times a minute,” said her mother, Lori Johnson. “She was frantic, she couldn’t eat, she couldn’t sleep.” And “when she wasn’t sneezing, she was very depressed… She lost all interest in anything. Her whole personality just dissolved into nothing.”

Then an otolaryngologist (an ear, nose, and throat doctor) realized Taylor wasn’t sneezing at all — the behavior was a repetitive, sneeze-like tic. That prompted a round of visits to neurologists, psychologists, and other specialists, until an allergist finally suggested a set of diagnoses unfamiliar to the Johnsons: PANS and PANDAS.

These disorders, a specialist told them, can arise in certain predisposed children when the immune system responds to an infection like strep throat by attacking the brain. The resulting inflammation can lead to violent body tics and OCD-like symptoms.

For confused and frustrated families like the Johnsons, these diagnoses can seem like an answer to their prayers, because they at least point a way to treatment. (Lori Johnson says Taylor has now had almost three years of antibiotics and a restricted diet, though she still has flare-ups and began IV treatment in March.)

But there’s a catch: Most doctors won’t treat the diseases — and many don’t believe they even exist. They believe standard treatments like Taylor’s lengthy rounds of antibiotics are unhelpful at best, and could have negative side effects and contribute to antibiotic resistance at worst.

“There clearly are children who have abrupt onset — and flare-ups — of a variety of behavioral abnormalities. That clearly happens,” said Dr. Stanford Shulman, an infectious disease specialist at Lurie Children’s Hospital and Northwestern University, in Chicago. “What’s unclear is whether there are any specific infectious triggers that are responsible for that — either strep or some other kinds of infections.”

The term PANDAS was coined in 1998 by Dr. Susan Swedo, principal investigator at the National Institute of Mental Health. While studying pediatric obsessive-compulsive disorder, Swedo noticed a possible link between strep throat and a sudden onset of the disorder, along with tics. It was known that strep can cause complications in the heart, kidneys, and parts of the brain, so her team began studying whether the infection can cause OCD- and Tourette-like symptoms as well. They named the condition PANDAS, for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. In 2010, they added the diagnosis PANS (pediatric acute-onset neuropsychiatric syndrome), a broader category of sudden-onset symptoms in the absence of strep. (PANS was Taylor Johnson’s diagnosis.)

But the diagnoses have long been controversial. Shulman wrote in 2016 that “the great preponderance of scientific evidence” on PANDAS “has been nonsupportive.” In an earlier paper, he suggested another explanation: that many childhood stressors can exacerbate underlying OCD and tics, and that strep infection “contributes to this to a relatively minor degree.” In an interview, he emphasized that there is no proof for the idea that infections act as a trigger for these symptoms.

Donald Gilbert, a neurologist at Cincinnati Children’s Hospital Medical Center, told The Wall Street Journal in 2015 that children who suddenly develop OCD — even following an infection — should be treated with standard OCD therapies, not the antibiotics and physical treatments advocated by PANDAS doctors.

And UpToDate, a resource used by doctors to aid diagnosis, is decidedly cautious on PANDAS. (It doesn’t have a separate entry for PANS.) It states that while most physicians agree that strep throat can exacerbate OCD or tic disorder in a subset of patients, PANDAS remains a controversial diagnosis.

“Because it’s not seen in every pediatric practice,” said Dr. Paul Grant, Susan Swedo’s colleague at NIMH, many pediatricians “don’t accept that it’s a real thing. But my experience is, when you see it, you say, ‘I don’t see how anybody could doubt that this is a real thing.’”


Even when researchers agree that sudden-onset mental symptoms should be studied, it can be hard to come to a consensus. In 2010, a group of researchers and experts gathered at NIMH to discuss how to treat children with PANDAS-like symptoms who test negative for strep throat. Swedo supported keeping PANDAS, but adding PANS as a broader category. Another prominent researcher, Dr. Harvey Singer, published a dissenting paper advocating the replacement of PANDAS with CANS — a new, broad category of sudden-onset symptoms without an emphasis on infectious triggers or treatment with antibiotics.

Perhaps as a result of cost, the disease seems to be more often diagnosed in wealthy children.

Adding to the confusion, PANDAS and PANS are clinical diagnoses. With no definitive tests to reveal their presence, many doctors diagnose by giving children extended antibiotics and watching to see if conditions improve.

The two disorders are often described as rare, but PANDAS Network, a parent-created national support group, estimates that upwards of 1 in 200 children are affected. Dr. Rosario Trifiletti, a neurologist in Ramsey, New Jersey, told Cosmopolitan in 2014 that there is “probably one PANDAS kid in every kindergarten class.” He said he treated 3,000 cases in the preceding five years.

While Trifiletti may be in the spotlight, he is hardly in the mainstream. In 2012, when a bewildering epidemic of mysterious tics descended on a group of high school girls in western New York, he examined some of the victims and announced on HLN’s “Dr. Drew” show that PANS or PANDAS was the likely culprit. That diagnosis did not convince other doctors, including NIMH’s Swedo, and the medical community eventually settled on conversion disorder (in which psychological stress is manifested physically) and mass psychogenic illness (in which the appearance of symptoms in others causes anxiety, triggering conversion disorder).

Lori Johnson says the uncertainty surrounding the disease makes pediatricians unwilling to diagnose or treat, and drives up the cost of care. The first PANDAS/PANS specialist she contacted charged $1,200 for a first appointment. All four specialists in her area “don’t want to deal with insurance companies, so they just say, ‘No, if you want to see me, you will pay me,’” she said. “They know they’re highly specialized, they’re one of a few that treat it … and some of them are, I hate to say it, exorbitant.” Taylor’s treatments have cost more than $15,000, some of which her mother crowdfunded online.

Many patients undergo lengthy rounds of antibiotics, and sometimes more intensive treatments like IVIG, in which the patient intravenously receives a blood product made from the plasmas of thousands of donors, and plasmapheresis, in which the blood’s plasma is removed and replaced in a process similar to kidney dialysis.

Perhaps as a result of cost, the disease seems to be more often diagnosed in wealthy children, Johnson says. Cases of PANDAS in Bethesda, Maryland — Time magazine’s “top earning town” and home to NIMH prompted a feature on the disease in a local magazine, which reported that it tends to affect children who are “smart, popular, active and well behaved.”

As more children are diagnosed with PANDAS and PANS, there are growing implications for hospitals, schools, and communities. Several states, including Connecticut, Illinois, and Massachusetts, are considering legislation that would require insurance companies to cover treatments like antibiotics and IVIG.

PANDAS Network provides letters and handouts for parents to give teachers, with recommended accommodations like extended time, frequent breaks, adapted or modified tasks, and “safe spaces.” Johnson said that when her daughter first developed PANS, “I had to get the board of education involved. I had to fight and fight.”

And it’s no surprise that families and physicians sometimes disagree over the best course of treatment. “There is so much God complex out there with doctors,” said Johnson. “They refuse to acknowledge something that is beyond their scope.”

In 2012, a 16-year-old patient named Elizabeth Wray was admitted to Boston Children’s Hospital for anorexia; her doctors believed it was a symptom of PANDAS, for which she was receiving antibiotics. To her parents’ horror, the hospital staff re-diagnosed her condition as psychiatric, not physical, and discontinued the antibiotics. As the disagreement escalated, the hospital contacted Child Protection Services and Elizabeth was placed in state custody for six months. In the midst of the fight, the Wray family’s lawyer appealed to the PANDAS community in an email, urging them to call the hospital and jam the switchboard because “they need to know that this movement is only going to grow.”

The Wray case was unusually dramatic, but Johnson says she too has felt like the doctors “were looking at me like I was crazy. Like I had Munchausen’s or something, because I would not accept the fact that it was a mental condition.”


No physician wants to see a child suffer. Yet different doctors look at the same body of PANDAS/PANS research and come to drastically different conclusions, and — in the face of uncertainty — whether to err on the side of caution or action.

“Everything has side effects. So I think we want to be judicious in recommending therapy when we really think it’s going to be beneficial, when the benefit would outweigh the risk.”

For Dr. Shulman, the infectious disease specialist in Chicago, the answer is caution.

“Every treatment has potential downsides and toxicities and side effects,” he said. “Taking antibiotics for very prolonged periods of time, IVIG on a repetitive basis, or plasma exchange or plasmapheresis — everything has side effects. So I think we want to be judicious in recommending therapy when we really think it’s going to be beneficial, when the benefit would outweigh the risk.”

Dr. Grant of NIMH, despite falling on the opposite side of the debate, expressed similar concerns. “Long-term use of antibiotics has any number of adverse effects,” he said. “It has side effects in the individual who is taking them, but it also has sort of population effects, because it predisposes to the overgrowth of resistant bacteria, so you don’t want to do that casually.”

Still, “all those things are considerations. You balance that with the severity of the symptoms in the individual child,” he said. “The role of a scientist, I think, is to be an inquirer, and to try to answer questions. You can be skeptical, sure, but until proven otherwise, you should keep an open mind.”

For her part, Lori Johnson agreed that “there’s just going to have to be a lot more research.”

In the meantime, every day, she sees more parents reaching out for help on PANDAS/PANS message boards and Facebook groups, desperately describing their children’s erratic and frightening behavior and hoping for answers.

Katie Rose Quandt is a freelance reporter in Brooklyn. Her work has been published by Slate, Mother Jones, and In These Times, among others.

See What Others Are Saying

75 comments / Join the Discussion

    I am amazed firstly that we are not alone. Although originally tagged Pediatric my daughter’s first case was from her dad’s fever blister HSV1 at age 19. After a horrible 2014 year and a 20 year visit to UTSW acclaimed Zale Lipshy psych ward, I was told by the autism specialist that she had a psychosis because she was autistic..end of story went home a zombie. We treated with antivirals and was good. Then she got lyme, the two go hand in hand. Then subsequent ‘flares’, now 5 or 6 ALL ATTRIBUTED TO either a viral or bacterial infection. Their system goes autoimmune due to something having triggered their immune system to do so. In my daughter’s case, autism spectrum she is a child of vaccine injury at 9 mos. (another story for another time) the aluminum in the vaccines acts as an adjuvant to stimulate a response, too much aluminum(which she has a high level) overstimulates the immune system causing it to attack something within self. With these kids it attacks the basal ganglia. My daughter’s progression is always the same in a flare. OCD, ANXIETY, INSOMNIA, (WITH LYME HYPOGLYCEMIA W/LOW BLOOD SUGAR -RAGE…ANOREXIA) BE CAUTIOUS WITH SURGERY. We had a near perfect 2016 but then had her wisdom teeth out at Thanksgiving……despite be on antibiotics a rouge infection happened …..into a flare we went. We had 4 Rochephin shots and she was better. Then January go worse again, had titers checked and this time HHV6-Roseola she was fighting, now on antivirals,
    in meantime in March made our way to UTSW again and saw the top autoimmune neurologist and he would NOT treat. Too controversial, so treat with psychiatrics which is what we have to do when she is in a flare. He offered nothing else! No MRI because hers looked normal, nothing…………no other doctors to go see. So what do us parents do? These are the things we have done 2014 – antiviral Valtrex for viral infection, psych hospital 20 days, 2015 IVIG – $6000 out of pocket no result
    2016- Almost perfect then wisdom teeth so now Rocephin shots, 2017- Rocephin, now antiviral and finally back on antipsychotic because she has lost 30 lbs since November 2016. Zeprexa at only 5mg has helped tremendously. Now we are trying another protocol controversy abound and hope for the best. But this is very trying, the UTSW neurologist called it a diagnostic purgatory. But he added……I think I would do the same if it was my child. No one knows their child better than you. i must add, if you are reluctant to psychiatric drugs, don’t be,,,I have another child, well not a child, brother is 20 my daughter is now 22.
    DON’T WAIT TILL THE FLARES GET SO BAD IT EFFECTS YOUR FAMILY UNIT AND MARRIAGE. Get the child under control while you still medically treat. Antibiotics there is an alternative…..colloidal silver. Research and good luck..

    Reply

    Hello? Are we still in 2017 or did I just get transported back into the dark ages? Infuriated is the emotion I felt after reading this trash attempting to pass as truth or (gasp!) “science”. I suggest you stick to articles on beauty, as it’s clear you lack the ability to deal in truth or in science.

    At first I thought to demand you retract the article …until I read the comments and then realized that should the reader look to the comment section for confirmation of your bias, they would clearly come away fully aware that the author is an ignoramus and may incidentally actually LEARN that the illness is indeed very real and in many cases treatable. So it’s a wash. However, if you want to protect your own integrity -Id suggest you research what these MD’s and parents are telling you and add a correction statement to the article with information for families to seek proper treatment. Unless of course you’re able to sleep at night knowing you’ve done an incredible disservice to an unknown amount of children and personally assisted in putting them at the alter of psychiatric medicine to treat a curable medical condition. Sheesh.

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    What i find disturbing are the doubts expressed by doctors. Not that they question but how they question – they doubt the patient. How ridiculous. At present, it appears we lack understanding – and instead of this being a way forward, it’s a reason to discount the existence of a rare issue because they don’t know what to do with it. Chronic fatigue was written off as a psychological condition for decades – it turns out it may be an immune system disorder that current testing is unable to confirm. The lastest research shows what knowledge was missing and a test is being developed. This will happen with PANDAS too.

    In the meantime, can doctors please learn not to blame patients? Honestly, it’s lazy and damaging. Correlation doesn’t equal causation – so keeping an open mind and listening to patients is almost as important for their well being as treatment is.

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    Pandas is an excuse that bad parents use to explain why they raised terrible children.

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    Wow Dave, Id love you to elaborate on your incredible medical findings! This could be the breakthrough we’ve all been praying for! Anxiously awaiting your reply!

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    This is uninformed irresponsible journalism. Please read the scientific papers that have been published on this condition. It is difficult to believe that anyone would write something like this in 2017.

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    My daughters symptoms were acute onset. Took 22 months to find someone who helped her. It was an MD that believed in pandas and treated her with a month of Cefdinir. In those 22 months she was pulled from school, daily panic, unable to function. Within 21 days of the antibiotic, she as nearly back to baseline. A happy, confident 12 year old whose panic, tics and the rest of her symptoms just disappeared! I wish those nonbelieving doctors could have witnessed the dramatic improvement. There was no denying that Cefdinir worked.

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    What a terrible article. Ms. Quandt, Do you even know who you are quoting here? Have you spoken to any of your supposed sources? This article is full of opinion and conjecture. You should be ashamed to put your name to such a poorly researched article.

    To the readers: There are many well cited articles and journal publications noted above. The Discover Magazine article just being published is excellent. This is a piece of trash.

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    Beliefs are used in religion. Science is used in medicine. Don’t mix the two up. Perhaps you hold stock in pharmaceutical companies and stand to profit from the use of psychiatric drugs. I am thankful to have my son well from treatment of this medical disorder with the use of antibiotics and IVIG. While researching for your article did you ever consider looking for the current peer reviewed literature? That would be my suggestion to you next time you decide to write an opinion piece on a disorder that devastates families.

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    Your article is very short on facts. Many medical schools teach about PANDAS and some have conferences about it where medical professionals can earn continuing education credits. Georgetown University Medical School just had one in the fall of 2016. The info is getting out there bit by bit. As far as not “believing” in PANDAS, many doctors are arrogant and think and work in the silo that they practice in. I can confidently say that giving a young child antibiotics is safer than giving them psych drugs. If the antibiotics reduce or eliminate the psych symptoms, then it was an infection that was the cause. I applaud the medical professionals that work with the parents to find a diagnosis. My son was misdiagnosed for years. Years we will never get back. I welcome you to come to the screening of “My Kid is Not Crazy: A Search for Hope in the Face of Misdiagnosis”. It is being shown in CT on March 30th and in MA on March 29th. You can learn a lot. A lot more than what you put in your article. And then perhaps write a followup article that will actually help children.

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    PANDAS has taken precious childhood moments away from our entire family. It is a complete crime that Doctors are not well versed with this horrific disease and they refuse to learn about it. The longer our children are left untreated, the more difficult it becomes to heal our kids. Doctors don’t think twice prescribing Psych meds to our kids, but they refuse to prescribe antibiotics. It is 2017! PANDAS is NOT controversial anymore! It is pure ignorance and arrogance that Doctors are not educated and place the blame in parenting style, etc!

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    What you neglected to say was that Elizabeth Wray worsened and only recovered after her parents regained custody, which occurred only after numerous protests outside by concerned parents. In the mean time Boston Children’s refused to admit that thy could possibly be wrong. That child suffered needlessly locked in the psyche ward for over 6 months because they wanted to be right and were not. They continue to medically kidnap children to this day and as wards of the state and are allowed to test drugs on them like common lab rats. The paper you sign, agreeing to treatment signs your parental rights away. If you disagree with BCH doctors treatment plan, you can lose your child. Also, many of the children Dr Trifiletti treated of children who suddenly all developed neuro tics, improved greatly under his guidance, treating the infection. Conversion disorder is what doctors say when they have no idea. Mainstream medicine prefers to get anyone with anything be put on dangerous psyche meds which have a black label warning for increased feeling of suicide. When big pharma can no longer bribe doctors into drugging our kids, maybe they will try to learn something new. Mass General has a PANDAS clinic with a year wait to get in after a 6 month wait to be interviewed. That’s a lot of kids with PANDAS. Dr. Trifiletti and others treat PANDAS to this day.

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    And yes, my daughter had PANDAS, and yes antibiotics brought back her normal personality.

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    PANDAS is very real. Unless you’ve lived it how can you say it’s not? My son is a true classic PANDA and my nephew was as well. The more research I do, I realize that I absolutely had PANDAS as a child also.

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    My sweet eight year old little boy, at the head of his class academically with many friends and a teachers favorite, came home one day and was a completely different child.
    Anxiety, incessant worry, “bad thoughts”, and a strange throat clearing sound that he repeated constantly.
    In those first few days I questioned him endlessly…I thought something had happened to him…I tried to discover a reason for his fear. His inability to leave the house…even leave my side…
    What was happening? He kept coming to me with all these worries…and they were strange, trivial and nonexistent. I found myself saying over and over that they “were no big deal” or “honey, that’s nothing you’d ever have to worry about”. He couldn’t go to school…the fear was real and debilitating. Then he said something to me that made my blood run cold…”mom, I think there’s something wrong with my brain” At that I sprang into action. Called his pediatrician and took him in the same day. This turned into something different. What I thought at first was a result of some incident… became the possibility of something much different….much worse.
    CT scans revealed brain wasting which got everyone’s attention but didn’t explains the severe OCD like symptoms that were developing. The rages he would go on…from my little boy who never even raised his voice before…he would sob after these occurrences. He didn’t know what was happening. The TICS got worse. More pronounced.
    Neurologist appointment and an MRI confirmed brain wasting…they wanted to wait 6 months, repeat the tests and go from there. We live in a small town in Northern Michigan and our resources are limited.
    In the meantime, my family members in New York were researching his symptoms and the phrase “sudden onset” rang a bell and we discovered PANDAS. It fit my son’s symptoms. When I mentioned it our pediatrician she said she had heard of it and even considered it. She had done a strep swab at the first visit but it came back negative so she turned her attention elsewhere, not fully understanding the nature of this disease. When I reviewed his symptoms with her she agreed it needed to be further explored…but where and with whom?
    My family had been working very hard and got us an appointment with a pediatrician neurologist at Boston Children’s Hospital. We flew out the very next day. My son fit the clinical diagnosis to a T. We came home from Boston with the treatment plan from a top Ped. Neurologist and our pediatrician from home who agreed to follow that plan. We began antibiotics and scheduled IVIG treatment. My son was back! It was truly a miracle. Our pediatrician and I discussed our future plan… diving into the unknown. What we did know was that rheumatic fever had been recognized and treated for years. We viewed PANDAS as rheumatic fever of the brain, and therefore chose to treat my son in the same way. Prophylactic Antibiotics, injected intramuscularly once a month for 3 years. No strep=no symptoms. When my son was 14 we ceased the injections. He told me not to worry…”if it comes back mom, I’ll know”. He’s going to be 15 tomorrow…he’s happy, healthy and has no lasting effects from his illness. From start to finish he was symptomatic a total of two years. The other day on the way home from track practice he wanted to talk about “that time”. You see he follows many of the PANDAS forums and such…he looked at me and said, “You never thought I was crazy mom. You trusted your gut and saved me. If you had let them try and treat my psychiatric symptoms, I might not have ever gotten better. Thank you.” Of course I balled my eyes out…but I didn’t ever think he was crazy. I knew in my heart there was something very wrong. My son and I worry all the time about the children who don’t receive the treatment they need. It’s really as simple as antibiotics. The diagnosis shouldn’t cost these families a fortune, insurance SHOULD cover it all and shame on anybody trying to get rich treating these families. More research is needed. More attention to this is imperative. We tell our story whenever we can. Our happy ending gives hope to those going through this now. There is hope. There is a future and for us it is so very very bright.

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    i would like to start researching the illness of being morons and idiots. Just because people do not believe in something does not mean it isn’t there. Is the world still flat? I have three sons. My child who DOES have PANDAS is my child who was the easiest most laid back of the 3. No medical or learning issues, and is an identical twin. IDENTICAL. Overnight, he was scared of everything germ related, voices, Things coming after him, not eating and fits of massage rage. It effects the entire family and in our case, the other half of a unit, an identical twin. We are going on our 4th year. We started our school year off, pretty much in remission. After the cold germs hit in November, we had a setback. The teachers were supportive and awesome, as they knew of our situation, and I took him in for them to see him in his PANDAS mode to pick up work. I encourage non-believers to seek out teachers who have seen the ‘normal’ child and the PANDAS child because I thought some of our teachers were going to cry! They sympathized with us and were so encouraging and patient with him when he did return to school. For them to be able to see our before and after, that’s all it took. These people who are trying to discount and detour people from believing in something like this are the crazy ones and there are special places for them. Karma is a strange little thing, and I do not wish this illness on any family! We just tell ourselves, it could be worse and are thankful for the help and support we DO RECIEVE!

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    Unless any Doctor or professional has personally been affected by this NOT so rare illness, they don’t want to believe. I am one of the fortunate parents who pushed and pushed through GP’s and Psychiatrists until I found an amazing Doctor who not only believes in Pandas but treats it as well. After almost 3 years of living a daily nightmare from 2013-2016, this Dr found the right combination of antibiotics and supplements that helped heal my 10 yr old daughter within 2 and a half yrs. Prednisone gave my daughter her life back within 48 hrs back in 2015 resetting her immune system. Unfortunately it doesn’t help all children. Today, she is a happy, mostly healthy, normal 11-12 yr old taking only probiotics, vit d and s, boulardi to keep the yeast at bay. Although she still has the odd issue with germs, it’s not debilitating anymore! It all started with untreated strep and then having molars breaking through for a couple years releasing daily amts of bacteria into her little body. Our children are Not to be dismissed as having psychiatric issues! My heart breaks for those parents and children who aren’t receiving the appropriate care they need. And with the outrageous number of children presenting all of these debilitating symptoms, how can the health care system NOT recognize that Pandas is REAL!!! My daughter is proof that it is REAL and CAN be treated and CURED!!!

    Reply

    This article was so poorly researched that it is truly astonishing.
    Dr. Susan Shulman is a woman, not a man as just one example.

    I would suggest this author had a bias going in only referencing resources that proved the preconceived hypothesis.

    May I suggest that a review of the actual peer reviewed literature might be informative. It is easy to spout opinion but completely irresponsible not to do the hard work of researching what has been published and peer reviewed.

    You also might find it interesting that the American academy of Aphereisi has approved phereis for this condition with 1b designation which means strong scientific support.

    If you don’t have access to pubmed, you have likely not seen the sentinel articles on this condition which might be helpful.

    It has always been well accepted that strep causes autoimmune reactions to the heart kidneys skin and brain. It is seen in children who have a genetic predisposition. Most are Caucasian and few are not but with the new genetic testing available, we all know now that we might not be exactly what we have believed ethnically.

    We had many die of rheumatic fever in the early 1900’s. Penicillin was invented and that helped a lot although the peak year for tonsillectomy in the US was 1959 with about 1.5 million tonsils removed. That number post HMO contol dropped in the 80’s to the mid 400 thousand and even further into the mid 300 thousand range in the mid 90’s. The outcome was chronic and very prevalent strep in some people who grew up during those decades. They are now parents and teachers.

    Next time I hope a little more research and less religion gets published because some of these children have died as a result of non diagnosis and many more relinquished to a life of severe disability with psychiatric symptoms that are curable. Now, wouldn’t that just be tragic for big pharma who makes all those drugs.

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    This comment was so poorly researched that it is truly astonishing.
    The author clearly quotes Dr. Stanford Shulman (a man), not Dr. Susan Shulman.

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    This is a real condition. The fact this is even a real article infuriates me. My nephew changed over night. The fact that you can even think it is made up makes me question your ability to have a coherent thought. This writer, if you actually read this, is a hack. Research, as well as doctrine, and legal admission confirms that this is a real condition. My nephew asked, not for toys or new things, but for his brother back. My entire family has been wanting the previous him to come back. If you think Autism and Asbergers is legitimate condition, then so is PANDAS.

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    To your point; “Perhaps as a result of cost, the disease seems to be more often diagnosed in wealthy children, Johnson says. Cases of PANDAS in Bethesda, Maryland — Time magazine’s “top earning town” and home to NIMH — prompted a feature on the disease in a local magazine, which reported that it tends to affect children who are “smart, popular, active and well behaved.” This doesn’t surprise me at all. As a parent of two kids with PANDAS/PANS, I am regularly saddened to think of all the children and lives lost to this condition. The means and resources it takes to deal with are incredible. Many of the symptoms these kids present with are also dismissed as “bad behaviour” or a “function of a stressful family environment/bad parenting”, meaning they are easier to identify as out of character in kids who are high functioning, to begin in. Sadly, the fact this condition is tied up with child development, parenting, medical uncertainty, and mental health, means that our families are forced to fight at all levels for recognition and help. However, far from being “rare”, I predict we will eventually understand the PANDAS/PANS underlying mechanisms to be responsible for far more common and less acute neuro-psych issues in the broader pediatric and probably adult populations. The mounting evidence of immune-brain involvement (in PANDAS/PANS and otherwise) will soon be too much for close-minded so-called experts to ignore. In the meantime, thank you to all the brave doctors and other health professionals sticking their necks out to help and advance this field.

    Reply

    Sydenham’s Chorea and St. Vitus Dance are related diseases recognized by doctor’s around 1850 when medicine was emerging from the dark ages. If doctors in 1850 could recognize it then today’s doctors are verging on malpractice for denying it’s existence. A simple Antibiotic treatment eliminated most of my son’s symptoms which had been misdiagnosed as Aspergers Syndrome.

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    PANDAS is very real. At age 7 my sweet, happy,
    Quick learning boy disappeared and was replaced over night with a boy who had multiple tics, rage episodes, debilitating OCD, and learning difficulties as well as a few other symptoms. He was not diagnosed for 7 years. In 2013 we were fortunate in finding a doctor who made the PANDAS diagnosis and started
    Antibiotics. Tics and rage disappeared after only a few days while everything else improved. Complete healing has not yet happened but we are hopeful.

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    PANDAS/PANS is a true diagnosis and a very REAzl. Disorder and syndrome. I have four adopted children, none biologically related. Two with PANDAS. our medical team in GA have provided treatment and care that has aided tremendously in ameliorating the symptoms. My daughter, age 16, seems to have ‘out grown’ or been cured. My son, age 10, is a more sever case with need for immune support, yet after 12 months on antibiotic has shown great improvement. I ask that you write a follow up article. Interview parents, children and mefical professionals who are in the midst of this PANDAS/PANS fight. Dig in and provide your readers with some real truth.

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    It is a disease, but I wouldn’t say it’s rare. I think it’s just sorely under or missed diagnosed!

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    WOW! Did you get your fact’s from a cereal box? You are so far off I would ,in my opinion call it libel!

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    I’ve seen it so many times and it’s very real. My children are symptom free because of an open minded doctor who prescribes supplements and antibiotics. They would still have OCD and a multitude of other symptoms if I followed the advice of standard treatment. Listen to the parents!

    Reply

    I am anti-medication, generally. I don’t get sick myself and don’t like pumping my kids full of stuff. Think I got a flu shot once in my life. PANDAS is real. I saw my daughter disappear out of nowhere, from an outgoing, healthy, athletic 10 yr old to a gaunt, withdrawn, sad scared little girl refusing to eat and unable to be away from her mother for any time at all. Interesting that it was another Dr. Schulman who is familiar with PANDAS, and prescribed antibiotics. On the morning of day 3, my daughter came down the stairs and poured her own cereal, went back for a muffin… She’s been practicing her gymnastics in the living room lately and is back to being one of the fastest runners in her class. The few times we tried to taper off atbx: tics and behaviors returned. We’ll probably be trying again soon because I get long-term consequences. But this article feels like flat-worlder denial of things others are experiencing in the field and are beginning to accept-whether or not they fully understand at this time. I especially like the comment on the dichotomy between geriatrics vs pediatrics approach to acute onset psychological symptoms.

    Reply

    2 of my 5 children have been diagnosed with PANDAS. My degree is in child and adolescent development so I was able to help identify the distinct behavior changes. My son had scarlet fever 5 times since his body did not present with strep symptoms. We finally had to have rapid strep tests at home to screen him since he wouldn’t display symptoms. Our pediatrician did not believe in it (5 years ago). It was his allergist that diagnosed him. To see the changes after he received antibiotics and steroids was amazing! My daughter started down the same path, tics and changes in behavior and decreased abilities I school. She did not present with any symptoms of pneumonia but her mycoplasma numbers were off the chart. We treated her with antibiotics and steroids and she was back to being herself. She then ended up with three cases of strep throat, each presenting with symptoms each treated with antibiotics. The infections were continuous after the next. Her tics were the worse we had seen. We had both children’s tonsils and adenoids’ out and they both have not had a strep infection in over a year. So article such as these make it harder for our children to be treated.

    Reply

    I’ve seen my child recover from a severe case of pandas.he only got worse and worse until he received long term antibiotics. I’m much less afraid of antibiotic resistance than wha t a full blown case of pandas looks like. That argument always seems ridiculous to me, just what are we saving the antibiotics for? This is a pretty serious illness and the time to use them is now. The fact that he recovered after this treatment is proof to me that it exists. All the controversy is just getting in the way of healing children. I’m not sure what the controversy really is about. It seems to be a divide between phychiatuc and physical illness Drs. In my experience Drs that treat physical illness understand how this could happen much more so than the phychiatric field, I wonder it there are some insecurities about their overall profession, you see the implication is that their job might be quite different in the future …they may have to look further than just prescribing pills. Second I’d like to see strep treated much more seriously in the first place so it gets spread less easily.

    Reply

    Although it is true that many MDs in North America are suspicious about the existance of PANDAS, most of them are not up to date on the most recent work.

    The vocal naysayers (Gilbert, Singer, Kurlan, Kaplan) last published their major “proof” that PANDAS doesn’t exist in late 2010 (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3024577/ ). There hasn’t been anything significant published on that “no” side since. In the meantime, the lead author of that paper (Dr. James Leckman) switched sides, convinced that this study (for which he remains the contact) had an error in how the pandas vs. non-pandas subjects were chosen. In other words, many pandas patients ended up in the non-pandas group and biased the result (as you can imagine, there was much hot debate about that).

    Leckman tried to convince his many co-authors long before the 2010 publish date, but they wouldn’t have it. Strong opinions die hard. But since that time, Leckman has joined the scientific advisory board at pandasnetwork.org, has appeared at PANDAS conferences, and has published on the pro-Pandas side. Here are the links that support that statement:

    http://www.pandasnetwork.org/our-role-and-impact/scientific-advisory-board/

    http://www.smart3doing.com/Videos

    https://www.omicsonline.org/from-research-subgroup-to-clinical-syndrome-modifying-the-pandas-criteria-to-describe-pans-pediatric-acute-onset-neuropsychiatric-syndrome-2161-0665.1000113.php?aid=4020

    http://www.nature.com/npp/journal/v37/n9/abs/npp201256a.html

    http://www.sciencedirect.com/science/article/pii/S0193953X14000550

    http://online.liebertpub.com/doi/abs/10.1089/cap.2014.0063?journalCode=cap

    There are also many, many more papers published since 2010 that Leckman wasn’t involved in, that show ground-breaking work on PANDAS and PANS – too many to list. Just type “PANDAS PANS” in google scholar. The ranks of those that are studying and demonstrating how PANDAS manifests and how it works have swollen, comprehensive clinics (e.g at Stanford) have popped up to treat PANS and PANDAS patients, and some insurance companies are covering the expensive treatments.

    Some of the naysayers are still talking, but without anything new and unchallenged supporting their old thoughts. They have quieted down from a decade ago.

    Reply

    PANDAS does exist! If medical professionals took the time required to learn about it, I guarantee at least half the kids misdiagnosed with ADD, ADHD and other disorders would actually be better off because there are options for treatment. Sadly if the parent doesn’t push to educate or find an advocate both patient and family members will suffer. PANDAS AND PANS disrupts the entire family and needs quicker diangnosis. Many families who have received proper care struggle with PTSD symptoms from the toll it takes. More education is needed and medical processionals have an obligation to learn all they can to help patients. Too many are overworked to take a step back and see the big picture. I’m convinced if they took a little more time considering the bigger picture they would see the problem more clearly. Isn’t the goal to help the patient so they can have a healthy life without interruption? It’s up to all of us to keep educating and advocating for those in need. Don’t ever give up on getting answers.

    Reply

    Apparently the physicians who “do not believe” in PANDAS or PANS have never experienced how something like antibiotics can turn a wild-eyed, sobbing, OCD stricken 8 year old who is unable to leave their mother’s side and unable to sleep into a normal kid.
    I guess it’s just easier and less embarassing for them to pump them full of psyche meds, admit them into full time psychiatric care and throw away the key rather than admit their position is WRONG and actually try to help these kids.
    This article is shameful.

    Reply

    I understand how publishing a story in this manner makes it more intriguing and marketable. Look at all the action you have gotten in the comments. But it’s really very harmful what you are doing — to advertise something as untrue when doctors all over the world acknowledge it and the American Association of Pediatrics is working on a definition for it. Clearly you haven’t experienced the struggle to get your child health coverage from work who buy I to your crazy marketing. You are hurting so many by advertising in this way. Perhaps a follow up story on how insurance companies are hurting families by pretending PANDAS AND PANS isn’t real…Know that authors make a difference in this world. Is this the difference you hope to make? Spreading doubt and misinformation? Breaks my heart.

    Reply

    Sadly, the author of this article does not appear to understand the disorder. It is an immune system based disorder, and as more exposure to toxins and pesticides becomes the norm, this disorder along with many others will increase in number. Myself and my sister have immune system disorders and two of my nieces and nephews have PANS. They both have underlying lyme disease, and both of these kids were perfectly typical kids before the onset of the disorder. I have neither the time nor the inclination to list all the scientific research that exists with respect to the proof of pans and pandas existence but I’m sure someone else here can enlighten the author.

    The authors way of thinking is a philosophy pans and pandas parents have been fighting against to obtain proper treatment. God forbid this author ever have his children or children close to him suffer from this horrific disorder, but it is not imaginary, and there is ample scientific proof of its existence.

    Reply

    Avery’s Story

    On March 27, 2012 our life was turned upside down when our sweet little girl was taken from us. No, not in the literal sense, but we had no idea who this little girl was that was looking back at us.

    We had been struggling with various behavior problems for weeks. I seriously was at my whit’s
    end. It’s a terrible feeling when you love your child, but you really don’t like them. It’s a dark thought in a mother’s mind. But this is a real story, with real feelings. The details are important to this story.

    Along with the behavior problems, Avery had been complaining non-stop about urinary issues. I had taken her to the pediatrician to have her checked for a UTI. They found nothing. At this appointment, I recalled mentioning the behavioral problems we were also dealing with at the time. The pediatrician’s office thought perhaps it was due to a new baby in the house. I wasn’t buying it. That “new” baby was over 6 months old. And Avery adored her. Avery was also dealing with a nasty cough that just would not go away, so they suggested we start an allergy medicine and see if that “dries things up”. We had a generic Zyrtec at home already, so we started her on that right away.

    Fast forward to Friday, March 16, the start of Spring break. Avery gets out of bed around 10:00pm complaining of stomach upset and vomits all over the stairs. Great start to spring break. She is sick with what appears to be a 24-hour bug. The following several nights are very difficult. She won’t go to sleep on her own. She wants me to stay with her. We try everything. We give her melatonin to help her sleep. I hold her hand until she falls asleep. Anything and everything, I try it. Sometimes it works sometimes it doesn’t. She says she’s afraid, but can’t articulate what exactly she’s afraid of. She’s not right. Something is wrong. It’s just weird. It’s hard to explain.

    A couple weeks after the first UTI test, she was still having urinary problems, so I took her to the local children’s urgent care and also talked to them about the behavioral issues. The urine test found nothing. The urgent care had nothing for me at all on the behavioral topic. This was the second medical professional group we had seen and both sent us on our way.

    The difficulty sleeping continued. One night we just let her cry herself to sleep because we couldn’t console her. The next night, again we let her cry. But this night she didn’t just cry, she screamed. She pleaded for us to come back to her room. She was full of complete and utter terror. This is the start of the WORST NIGHT OF MY LIFE. It’s March 27, 2012.

    It’s a bit of a blur now. I thank God that I have a hard time remembering all the details. The short story, she never went to sleep that night. She was confused, scared, extremely agitated, and angry. She couldn’t settle down, but was so very tired. She would hide in the corner. It was awful. I made several calls to the on-call doctor. They had nothing for me. I almost took her to the emergency room once around midnight. But I second-guessed myself. Then at 4:00 am, I finally took her to Children’s Emergency Room. Oh, this was also a time when Erick was sick with Labrynthitis and couldn’t drive. So, I ended up calling my friend to come sleep on my sofa so I could drive Avery and Erick to the ER. I had to drop them off because I was still exclusively nursing the baby and had to drive home to be with her.Erick and Avery spent several hours at the ER. They again found nothing. Even though the doctors said they have “ruled out anything medical” they did no tests on her. I picked them up around 9:00 am. The social worker had spoken to Avery and recapped her findings with me when I get there. The social worker said Avery is a highly anxious little girl and needs therapy. The ER staff basically sent us on our way, with a good luck and sympathetic look. Meanwhile, Avery still hadn’t slept. I couldn’t keep myself together. I thought, “This is not happening.” We left the hospital in a daze and followed up later that morning with our pediatrician’s office.

    The pediatrician still had nothing for us. She asked us tons of questions about family history of mental disorders. Erick and I looked like a freight train hit us and backed up and hit us again for good measure. I was a complete mess when they were about to send us home with nothing, yet again. Not even anything to help my baby sleep. Erick stepped up and told them we’re not leaving without help. They finally gave us something to help her sleep. Oh, we did also leave with one great thing from that appointment. Avery told the pediatrician that she was afraid of her room so the doctor suggested Avery sleep in the office on the chaise. No big deal right? Except she ended up sleeping on that chaise for three months! Oh, I digress.

    We battled Avery’s anxiety and behavior issues for a few more days. Now I don’t mean to make this seem light. When I say battle, I mean her emotions are so out of whack that one day, when she got upset because she couldn’t have ice cream because her behavior was not acceptable, she ended up curled up on the floor in her room with a fear stricken blank stare on her face, just rocking back and forth and uttering nonsense. I have never cried so much in all of my life. All I could do was hold her until I couldn’t handle it anymore and had to walk away. She still required sleep meds to get to sleep, but it would still take her several hours to fall asleep. Then, she wouldn’t stay asleep, and would wake for hours in the middle of the night. Every night. Erick and I, and a couple times my mom, would take turns sleeping on the floor in the office in hopes of reducing the outbursts. This is about when Erick and I found the fight in us again. We decided that on the evening of April 1, after we get her to sleep, we were going to stay up and do research for as long as it takes to find some answers.

    So, I went about my “normal” routine of trying to get Avery to sleep. And by the time I tiptoed out of the office about an hour later, Erick had found something of interest. Up until this point we were thinking this was all an adverse reaction to the Zyrtec we started her on weeks before. Made sense. It was the ONLY thing that had changed in her routine. So, Erick started researching behavior issues associated with Zyrtec. And let me tell you, there are issues with Zyrtec. But, on a message board pertaining to Zyrtec he found a woman that made reference to something called P.A.N.D.A.S. Quick! Google search! Pediatric Autoimmune Neurological Disorder Associated with Strep.

    It was a dead ringer for everything, and I mean everything, Avery was suffering from:• Abrupt onset of OCD (the urinary issues)• Anxiety• Emotional Lability• Aggression• Irritability• Oppositional Behavior• Increased urinary frequency

    She had all of these. I called the after hours voicemail to schedule an appointment to get her tested for Strep the next day. Long story short – she was positive for strep without any classic symptoms of strep. She had PANDAS. Another battle was about to begin because our pediatrician didn’t believe PANDAS existed.

    Over the next few days we dealt with our non-believing pediatrician and finally decided to have a phone consult with a PANDAS doctor in Chicago. He was worth his fee in gold. He confirmed the diagnosis of PANDAS and explained to us what was going on in Avery’s brain. The strep was causing an autoimmune reaction that was attacking the part of her brain that controls behavior. She was really sick.

    We finally ended up changing pediatricians. Our new pediatrician is PANDAS friendly, meaning she actually believes it exists and treats its appropriately. She ordered more tests on Avery and we found out a couple weeks later that not only did she have strep, but she had mycoplasma as well (walking pneumonia). Both cause PANDAS symptoms. She completed three rounds of hardcore antibiotics and eventually, slowly, we got our little girl back.

    I share Avery’s story after six months because it is my hope that someone will read this and be able to help another child. This is a life changing disorder, but it is a treatable disorder. Antibiotics are what these kids need. It’s so simple. But no one found it for us. Not the pediatrician. Not the urgent care. Not the Emergency room.

    It is by God’s grace that we were able to figure this out on our own, with no help from the medical community. I am forever grateful for my friend that works the night shift, is an RN, and was determined to figure out what was going on too. I would text her all night long looking for answers. I’m thankful for God putting people in our path that could help us with their own experiences and the friends that helped with the baby when we needed to go to so many doctors’ appointments. I’m thankful for friends that lent an ear when I just couldn’t keep it together. For my mom helping us through some of those difficult nights. For my brother’s simple but impactful Facebook message. The prayers. I could go on and on.

    I’m eternally giving thanks to God for showing us his presence in the darkness and helping us pull though one of the most difficult times in our lives.

    It’s still a struggle and every infection Avery is exposed to can cause a flare up. But we now know the symptoms and are getting better everyday at recognizing their onset. Our pediatrician has empowered us with the ability to refill her antibiotics as needed. Avery is one strong girl. She understands her limitations and is so very good about it. We steer clear of food-dyes, refined sugars, cows milk and gluten. She takes several supplements designed to boost her immune system and hopefully keep her from getting sick again.

    To date, Avery’s story has helped two other children (that we’re aware of) get the help they need. Praise God.

    Reply

    All real, if the craziness is not caused by inflammation then why did my son get 100% more manageable just after a week of Predinisone after being totally dysfunctional. We thought he had Tourettes and Aspergers for 10 years after getting Cox So fortunate to have a normal 14 year old thanks to great docs.

    Reply

    We treated stomach ulcers quite poorly until Barry Marshall and Robin Warren broke through the dogma with their discovery h pylori as the cause. Science is always incomplete until the right experiments are done. PANS seems like incomplete science that needs the the true causes identified.

    That doctors would use gaps in the applied science of this disorder to exploit people by charging outrageous fees is shameful. All patients with the symptoms should be registered into a database so patterns can be more effectively searched for. Right now the treatment seems hot or miss.

    One interesting observation is the more common occurrence in wealthier children. Wealth is tied to immune dysregulation due to low childhood environmental exposures.

    Reply

    It is hard to believe… until you live with it daily and you see it happen to someone you love. Spend time with a PANDA and their family and you will believe. The worse part are naysayers who point fingers. My son was in the box excelling child in December… had strep and H1N1 -a month later couldn’t tie a shoe, write his name, eat solids, and started having seizures. Four years of hell. 30 days after starting treatment we saw light in our darkness. Due to the delay of diagnosis because of lack of knowledge… he will always have reciprocal symptoms… but is 90% better not only enjoying life but giving so much to
    Our community making a difference in so many lives. If I had listened to the medical team, he would be in an institution or dead 😢 This article angers and saddens me!

    Reply

    These doctors have no clue and unless you LISTEN and pay attention to your patients you will never know…. Thank god my son has a doctor that does…. I am sorry but my son was completely fibe until he got strep and after 1 1/2 years of treatment he was back to. Kemal UNTIL he got sick again, then was treated for 2 years and was 100% again UNTIL he got sick again with strep….. so you tell me it’s not real…. he gets better and only has issues when he gets sick…..

    Reply

    Families living with PANDAS/PANS have felt the turmoil caused by lack of research and physician knowledge. Nursing schools are educating students about this critical issue facing families but physicians currently working in the field of medicine are woefully ignorant and our children suffer for it.

    Reply

    Come stay at my
    House for a couple days or even hours and you would know pandas is real. Come study my child.

    Reply

    In your article, you state: “Most doctors won’t treat the diseases — and many don’t believe they even exist.” What evidence do you have to support this because it is disingenuous to suggest it as fact without supporting evidence. I propose that the more accurate reason most doctors are not treating it is that they are not even aware of it. Also, you state: “They believe standard treatments like Taylor’s lengthy rounds of antibiotics are unhelpful at best, and could have negative side effects and contribute to antibiotic resistance at worst.” Are you aware that in other countries, IVIG treatment is accepted as an off-label use for PANDAS covered by insurance? Why do you think they would do that? Could it be they find that the risk is not as great as the suffering?

    Reply

    PANDAS is not the only condition related to strep a damage that requires long-term antibiotics as a routine treatment. The difference in my child is night and day when he’s not experiencing infection and producing antibodies.

    Reply

    If you want to know if it’s “real” come live with my son for a month or ask his team of ABA therapists or his school teachers or neighbors or family members or bus driver! Ask anyone that has seen my son over a period of time and they will tell you that there are 2 of him. There is my son when he is healthy who is sweet, funny, playful and smart. Then there is my son when he is sick with something bacterial or viral and he is aggressive, impulsive, manic, OCD and unfocused.

    It is so obviously real in my everday life that when I read things like this or hear the skeptics brush it off I feel like I must be in crazy town! How can they possibly deny this?!?

    Reply

    Very real! My son had it when he was in first grade and was on and off till 6th. He is now a sophomore in h.s. and I thank God every day that it went away and hope it stays away. He had a bad strep infection and the only way we found out he had an infection was through a blood test and his antibodies were extremely high.

    Reply

    The international medical community has moved on from this argument and they are directing their energy towards groundbreaking research. Imagine finding and treating the cause of psychiatric symptoms.

    From an international research consortium, EMTICS: “We hypothesise that the onset and/or exacerbation of tic and comorbid obsessive-compulsive disorders is associated with increased preceding occurrence of Group A beta-haemolytic Streptococcus (GAS) infections of specific molecular subtypes, and that this association is based on genetic susceptibility factors and mediated through immunological mechanisms related to psychosocial stress and immunological factors in host and GAS strains.”
    http://www.emtics.eu/index.php?option=com_content&view=article&id=2&Itemid=112
    http://www.emtics.eu/index.php?option=com_content&view=article&id=9&Itemid=138

    The Discover article is absolutely worth finding on newsstands or buying online. It is a 10 page summary of years of research.
    http://discovermagazine.com/2017/april-2017/hidden-invaders

    Reply

    So tired of hearing how “controversial” a PANDAS/PANS diagnosis is. It is very real and very terrifying. I’m grateful to have found treatment for my son but after much difficulty and searching. My hope is that awareness continues to spread in the medical community.

    Reply

    Yes, this article is written very poorly. For more information and s realistic view of the scientific struggle to understand this complicated disorder rather than a banter about doctors and people who have little knowledge or experience definitely read the Discover Science April 2017 article. Author, ridiculous hmmm. It sounds like you should maybe write about fashion, not medical?

    Reply

    Ms. Quandt your piece seems to bias towards the conclusion that PANDAS is unproven. The unfortunate truth is that PANDAS may only be the tip of the proverbial iceberg when it comes to diseases of the auto immune system and what is on the horizon for our children. Research is finding connections between Alzheimer’s; multiple sclerosis and even attention deficit disorders and the dysfunction of our immune systems. New, and growing, research points to inflammation caused by our auto immune system, often in response to infections, leading to neurological changes- i.e. mental disorders. How far fetch is it to believe that an illness in our bodies would create an illness in our brains? The brain is, after all, an organ within our bodies. There is a growing number of children being treated with psychiatric drugs. Studies have shown that a large percentage of them do not receive benefits from these drugs and there is a whole subgroup that actually worsens when taking such drugs. Could it be because these drugs are not effective in treating the true underlying cause? Alois Alzheimer first observed and documented Alzheimer’s disease in 1906 but it was not until the 1970s that this disease was accepted as a major disease and research was begun. Think how horrible this could be for millions of children around the world if we dismiss PANDAS as insignificant or “not real”.

    Reply

    Anyone questioning that this is a disease is just not scientifically and medically up to date with research. This is not a religion where you choose to believe. There are 15 centers of excellences around the country ( including Stanford, Georgetown DC and Boston Mass) many conferences have been held with experts scientists and medical doctors held in place such as Georgetown University. Columbia Medical School are paving the way on Research and have discovered the MOA and causality. There is no debate. Post infectious Autoimmune encephalitis is real ! To deny is like denying the earth is round.
    We MUST protect these children and families who suffer so much. These children are incredible and to deny them recognition and treatment is shocking in 2017.

    Reply

    Instead of desperately trying to prove this is not real (PANDAS/PANS) why not try to figure out what this actually is – why is the medical community so resistant to a potential answer to what is making our children neurologically impaired? If this is simply a case of neurotransmitters gone wild then why do psychiatric drugs typically fail for these children? Why do many improve drastically with a tonsillectomy & adenoidectomy? Why do many regain their math and writing skills, or stop using the bathroom hundreds of times a day, or no longer suffer debilitating anxiety or OCD once they are on a course of antibiotics?

    When you hold your 9 year old child’s hand in the hospital while he describes his desire to die and discusses the horrible auditory hallucinations he is experiencing and the doctors are trying one drug after another without improvement, you can magine how scary that might be!? When your child trys to exit a moving car on the highway, when your child runs to sit in traffic, when your child sobs from another exhausting day at school where he was taunted and talked down too perhaps you would be asking why too? But then after a course of antibiotics you see those behaviors go away, what other conclusion should we draw?

    We can be skeptical, we can ask for more research, in fact as parents of these kids, we encourage more research. We challenge all our doctors: please – Make our kids well. Make them better. Give them a future. We have seen the power of antibiotics and IVIG on the health of our children. We see the psychiatric symptoms go away, we see our children at their best once again, how can this not be connected?. No child deserves to be condemned to a lifetime of psychiatry if the trigger is truly treatable, shouldn’t we at least expect our medical professionals to be “the inquirers” for our children’s sakes.

    Reply

    When you have two children who both presented with these horrible conditions and a simple antibiotic helps them get back to themselves, there’s no doubt. You cannot deny this is a real disease when thousands upon thousands of children respond to antibiotic therapy (and other treatments that are NOT psych related). Pandas/pans is so very real. Until you have a child (or children!) who suffer with it, you have ZERO right to speculate that this is not a real disease.

    My daughter has peri anal strep. Had the ‘rash’ for over a year. The behavioral symptoms began at the same time as the ‘rash’. She was 2.5 years old. A BABY. Developed severe sensory issues. She could only tolerate one specific dress and one specific shirt with no bottoms. Refused shoes 95% of the time. Ate ONLY a ‘chip sandwich’ for breakfast, lunch, dinner, snacks for three straight weeks (previously ate ANYTHING she was offered), began to HATE her beloved gymnastics and music classes. Everything was too loud. When any attention was put on her, she would have hour long meltdowns and sometimes ENTIRE DAY Meltdowns. She craved propricpetive input. She twirled so intensely that she made everyone around her dizzy. She began raging. Hitting. Biting. Screaming a shrill scream. Inconsolable most of the time. Her fine motor skills regressed significantly. She went from coloring in the lines perfectly with a proper pencil grip to scribbling over the entire page with a full fisted pencil grip. When we found the antibiotic that worked for her — she got back to 100% well within ONE WEEK. My child do not cry. She did not meltdown. She wore all types of clothes and shoes. She ate more foods. She was HAPPY. She told me she loved me over and over (never hppened before!). When we begin weaning her off the antibiotic, she flares. Her ‘rash’ returns. Sadly, after the first time we began to wean her, we were unable to get back to 100% well. Been on antibiotic for 14 months. Finally found a pandas specialist who found out that she is a VERY sick little girl. She has so many issues. We are treating them all and we are hopeful she will make a full recovery. She is 4.5 years old and 80% well.

    Our son presented with a severe eye tic out of the blue. He was 2 years old. My fil noticed it first. I brushed it off. It got more intense every day. It was constant. I finally rushed him to the pediatrician when it dawned on me that it was a tic and that tics are a top symptom of PANDAS/PANS. Our ped said ‘ let’s test him for strep throat’. I said — you’re crazy! He isn’t sick! He is eating, has no fever!’ Tested positive for strep threat. :(( his tic cleared up on day 8 of the antibiotic. Sadly, his behavior began to regress. He became inconsolable, refused anyone but myself to care for him, severely restricted eating. 2 months after the first strep infection, he developed the tic again in addition to a fever. The second I saw the first tic, I rushed him to the dr. Strep throat. Sadly, this time the tic did not go away and his behavior continued to get worse. I was in denial. How could I have two kids with pandas. After three weeks of my sweet, happy go lucky, baby boy miserable from the time he woke up until the time he went to sleep. Screaming at the top of his lungs most of the day, stopped playing! What two year old boy stops playing?! Just cried constantly. I took him back to the ped. He put him on long term biaxin. My baby boy was back in 72 hours. He ran up to his daddy when he got home from work and gave him a hug! He let him change his diaper! He played with his cars and monster trucks. His tic disappeared. He’s happy again. He’s eating. He’s not screaming.

    Pandas is real. Pans is real. Do not negate it just bc you don’t have personal experience with it. Period.

    Reply

    Very real. We live it. Teachers are often the first to believe. They see the behaviors one day and then 3 days on Prednisone (not ssris, antipsychotics, etc.), the child is back to “normal.” Handwriting can change drastically (from perfect to unreadable chicken scratch) overnight. If lucky and caught early, it can easily be managed with antibiotics- just like “normal” strep.

    Reply

    It’s real. Our daughter went from 5th grade to non-verbal toddler over 3-4 years. She is 21 YO now and the OCD is debilitating most times and frustrating to her. MRI of brain shows no damage, but inflammation. She breaks through momentarily every once in a while. We see the liht in her eyes. We have hope there will be solutions some day. We have done antibiotics, steroids, IVIG and plasmapheresis. She tests negative for everything. They will map the protein interactions with cells one day and come up with a solution.

    Reply

    In 2011, my then 13-year-old son developed sudden onset of OCD disorder after double ear infections and sinus infection. We’re talking about a kid who had no history of mental illness, behavioral or otherwise. Just a typical loving, super smart, funny boy who suddenly became a very different child. After some research, we found Dr. Margo Theinemann in Palo Alto California. She diagnosed him with PANDAS/PANS and prescribed antibiotics. Within days we saw improvements. It was a difficult journey but we knew the infections are what caused the inflammation in his brain. At about two years, his brain inflammation had subsided. Graduated high school at the top of his class is is currently away at college staying biochemistry. 4 years healthy! Thank God we had doctors and a research team that knew what was happening to our son. ❤ our amazing team at Stanford.

    Reply

    My son suffered for six years. One IVIG treatment, and he was cured. By “suffered” I mean screaming vocal tics every few seconds all day, every day after being exposed to strep. He was on 3 antipsychotic meds for six years. After treatment he has never been on meds again. That was in 2009. He is a senior in college now but we used to think he would never be able to be on his own. He had no side-effects from treatment. It is unthinkable to me that an affected kid should have antibiotics withheld to ward off antibiotic resistance for the betterment of the population. I can’t even believe that a professional would suggest sacrificing a child like that. Those of us who have lived this can tell you it is most certainly real and there are treatments that work. In simple terms, PANDAS/PANS is like rheumatic heart disease but in the brain. Rheumatic heart disease is neither disputed or left untreated.

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    This is a very real and very serious disease. Our daughter was outgoing, always on the go, loved school, shopping and playing with friends. She suddenly was overwhelmed with fear, anxiety and irrational phobias. She does not attend school regularly and can no longer do the things she loves. She so wants to but is too scared. It happened overnight and her therapist suggested PANDAS. Sure enough, she tested positive for strep which led us to finding out she also has Lyme and other co-infections. It is REAL and it is HEARTBREAKING. You watch your child suffer and miss out on their childhood, and they don’t understand why it’s happening to them. As parents, it is a frightening feeling when healthcare providers don’t believe or support you. We have been so blessed to find the support and treatment our daughter needs but, we were forced to travel out of state. There are too many children suffering from this. There needs to be a change!

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    To the doctors who think that treatment options have serious side effects, you should have seen how sick my daughter was for so many years before being diagnosed and treated. She could not function and missed years of schooling. The damage her illness caused socially ,physically(she stopped eating) and the long tearm psychological affects from being misdiagnosed as having severe mental illness. I am shocked that doctors continue to deny this is a real illness. After treatment ,my daughter was finally able to recover and is graduating from high school with honors and off to college next year. Remarkable after missing years of school. She is 100% symptom free. The doctors who chose to see outside the box saved my daughters life. All of the psychiatric drugs she was put on at age 6 were more damaging than any of the treatments for PANDAS. Shame on the doctors who refuse to treat!

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    If a doctor sees immediate onset of body and/or vocal tics and OCD behaviors or other behavioral changes, and that doctor sees that ASO titers remain high for no identifiable reason, they are negligent if they don’t consider PANDAS and try antibiotics immediately. A neuro told me that my daughters disappearance of symptoms after antibiotics was “a coincidence.” Since when do antibiotics cure Tourette’s and OCD? Ridiculous. Shameful. Absolute shame on those who are closed-minded in the face of obvious blood markers and improvement after treatment. They should pray their child never experiences PANDAS, because I guarantee they would treat it as an infection if they dealt with it daily. Our children shouldn’t be robbed of their childhoods because we have to wait for doctors to see what’s been around for 100 years (Sydenham’s chorea, St. Vitus Dance after rheumatic and scarlet fever…takes moments of research, c’mon doctors!)

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    In 2008 my 13 year old daughter developed tics such as swift head jerk and arm swing. She never had any OCD symptoms or tics before. One day I counted 50-60 times!!! We took her to see a nuerologist who did an EEG and could not find anything wrong with her coming from her brain. Her only solution was to medicate her to which we said no. Soon after she was diagnosed with strep throat and put on a course of antibiotics. The tics and motions lessened substantially and I made a connection to the doctor who told me that it was not related! I had not heard of PANDAS until a few years after and said she probably had it and was helped by the antibiotics by being treated so early. She is 22 now and still has some occational tics. Doctors need to listen to parents. I totally believe that someday psychiatric issues will be cured and not just treated by masking the symptoms with medications!

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    This piece is not especially balanced and contains a number of inaccuracies. My child has pandas. It is unmistakeable. We have a clear cut strep involvement although mycoplasma causes big flares as well. My child is normal, then gets or even is simply exposed to strep, and his behavior changes radically. He has mild but unmistakeable OCD, emotional liability, extreme separation anxiety, etc. Strep causes rheumatic heart fever and Sydenham’s chorea and that’s not doubted yet pandas is? Fortunately, my son’s very mainstream health care providers (pediatricians, neurologist, and behavioral psychotherapist) all recognize. We are lucky – antibiotics and NSAIDS help dramatically during flares. We haven’t done IVIG because he’s been doing so well. I meet more doctors who understand it than I meet who do not. Btw when I was a child I had frequent strep infections. I was also diagnosed with Tourette’s for tics I had as a child. These went away around adolescence. We of course will never know, but maybe I had some mild pandas as well. Good luck to all parents reading this – as it will no doubt serve as yet another article that upsets.

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    So riddle me this, why then in geriatrics when a patient shows up with sudden onset psychiatric symptoms is the first thing to be looked for is an infectious trigger, but in pediatrics you are suggesting that PANDAS/PANS And searching for the infectious trigger is controversial? Our our kids futures not with saving? Are they with less than our parents and grand parents? Why sentence them to lives of psychotropic drugs if treatmenr such as antibiotics or other treatments could clear these infections? Why ruin and take year away from what should be some of the happiest of their lives. Come on. Do better research on the topic it is out there.

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    My child is a survivor. I welcome any doubting doctors to join me for tea and I shall gladly illuminate them.

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    PANDAS is very real. The science is there. The idea that ignoring newer science to treat patients is irresponsible and ludicrous. Over and over we are finding many things are crossing the blood brain barrier. Why just treat a symptom if you can find and treat a root cause? Is it not the goal of the physician to HEAL? PANDAS information doesn’t have to alienate but actually give physician a root cause to treat.

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    I did not believe this disorder was real until a few years ago when I treated my first patient with PANS and they recovered in a few months and have continued to do well. Since then I have treated over 50 children with very good results. I found that for mild and moderate severity cases of PANS all they needed was daily mild first generation cephalosporins and naproxen and their symptoms of OCD, anxiety, and tics disappeared. The important aspect of the diagnosis is to perform a detailed clinical history to differentiate the kids with recurrent sudden onset of symptoms when their immune systems are activated by exposure to infection as opposed to those with the slow steadier onset of true OCD, Anxiety disorder or Tourettes. Another thing I found in my PANS patients is a high rate of cases of rectal strep infections that are frequently missed by their caregivers and not treated.

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    Look at the research from the link between schizophrenia and the flu. Infection can cause behavioral changes . If a child has OCD, anxiety and other psychiatric changes that go away on an antibiotic, then it is not a psychiatric illness. Why not rule out infection? Is putting a child on an antibiotic worse than Zoloft or Prozac?

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    The documentary, “My Kid is not Crazy” is coming out this spring — all about Pandas. The fact that immune modulating therapies such as IVIG and plasmapheresis make PANDAS OCD, anorexia, and the accompanying ticcing and behavioral issues go away(!) is directly related to the autoimmune reaction in this population! Crippling OCD is not known to be stopped with immune modulation! Steroids and antibiotics neither!

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    Discover magazine has a much better article, with up to date medical analysis which
    basically proves Pandas is very much real.

    Reply
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