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Kelly Wooldridge
Brendan Wooldridge, 10, of St. Louis, was diagnosed with PANDAS nearly a year ago after suffering with OCD and other disorders linked to strep throat infections he had as a toddler.
For Kelly Wooldridge of St. Louis, the change in her son’s behavior was so abrupt, it was like someone flipped a switch.
Overnight, Brendan, now 10, went from being an easy-going, “huggy-kissy” kid to a rageful child plagued with tics, compulsions and obsessions, she said.
“He would walk up and choke kids at school, or pick up a chair and throw it at them,” recalled Wooldridge, 37. Brendan developed facial tics, constant throat clearing, some humming.
"He was just miserable in his own skin," his mother said.
The shift first occurred when Brendan was 3, just after several recurring bouts of strep throat. The disturbing behaviors lingered, seeming to wax and wane for the next few years with no clear cause or explanation.
It wasn’t until last year that Wooldridge -- like a growing number of parents, pediatricians and researchers -- finally connected the dots between the common childhood infection and the sudden onset of some forms of mental illness.
“Last spring, we learned about PANDAS,” said Wooldridge. “I thought it sounded a little crazy, but it totally fit.”
PANDAS -- or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections -- is the unusual diagnosis given to a group of children who abruptly develop Obsessive Compulsive Disorder or tic disorders such as Tourette’s Syndrome – but only after contracting infections such as scarlet fever or strep throat caused by Group A streptococcus bacteria.
“Parents describe it as a ‘possession’ or an ‘explosion’ of symptoms,” said Dr. Susan Swedo, a leading PANDAS expert and senior investigator in neuroscience at the National Institutes of Health.
PANDAS turned out to be the cause of non-stop sneezing for Lauren Johnson, a 12-year-old girl featured on NBC’s TODAY show, and it was linked for a time to outbursts of tics and twitches suffered by more than a dozen school-aged girls in LeRoy, N.Y.
On Thursday, the International OCD Foundation, or IOCDF, warned that mental illnesses such as OCD can be triggered by infections in children.
“If a parent recognizes these symptoms developing seemingly overnight, along with a glaring change in their child’s personality and/or behavior, they should immediately have their child tested for strep,” agency officials said.
Quick treatment with antibiotics can be the key to reversing OCD, tics and other symptoms, said Swedo.
“If you treat it acutely with antibiotics, it will help quite quickly,” she said, noting that symptoms from the first episode eventually will subside. “But if a child gets another trigger, symptoms will return. If you have three episodes, the symptoms will become chronic.”
It’s not clear how many children may be affected by the disorder. About 1 percent of all children have OCD, but Swedo says there has been no research to determine the prevalence of sudden onset of the disorder preceded by strep or other infections.
But both she and Dr. Michael Jenike, a Harvard Medical School psychiatrist who’s also been studying the problem, say in-progress research and the comments they hear from desperate parents every day indicate that PANDAS could be far more common than anyone suspects.
“It could be dozens of kids a day in this country,” said Jenike, who also chairs the IOCDF scientific advisory board.
Some children may have a genetic vulnerability to the disorder and parents of some sufferers believe that it may run in families.
Now, new research suggests that the problem may extend beyond sudden OCD sparked by strep bacteria to include other infections, including Lyme disease, chicken pox -- even the flu.
This month, Swedo and other researchers have published a paper in the journal Pediatrics & Therapeutics that expands the definition of PANDAS to PANS, or Pediatric Acute-onset Neuropsychiatric Syndrome, which encompasses more potential causes.
The goal is to urge doctors and other clinicians to consider a full range of signals when they’re faced with abrupt changes in a child’s behavior or mental state.
“It’s clinically very, very distinct,” Swedo said. “Your only job is to find a treatable trigger.”
The trigger is believed to lie with the antibodies that are normally produced by the body to fight infection. Usually, in the case of a bacterial infection, the antibodies attack the invading bacteria and help elminate them from the body. But in the case of PANDAS, for instance, researchers believe patients mount an unusual immune response in which the antibodies may mistakenly attack the part of the brain that controls emotions, behaviors and physical movements.
Parents of children with PANDAS have been a galvanizing force for education and awareness, said Lynn Johnson, Lauren's mother, who founded the nonprofit PANDAS Resource Network after her family's experience.
To such parents, there’s no question that strep and other infections are involved. Meghan Sherman, 15, of Plano, Texas, was diagnosed with PANDAS only recently, but she’s had OCD symptoms that rise and fall with infections since she was 7, says her mother, Jen Sherman.
“When we treated the strep, the symptoms would go away. I’ve seen it with Fifth disease and with flu and with other illnesses,” said Jen Sherman. Meghan now takes precautionary antibiotics during the winter cold and flu season to ward off infections -- and OCD.
When Kelly Wooldridge found out about PANDAS, she asked a doctor to test Brendan’s blood for strep, even though he didn’t seem sick. It came back positive.
Now she’s taken his care a step further, opting for intravenous immunoglobulin or IVIG treatments that are thought to suppress harmful inflammation in the body.
The change in her son, she says, is remarkable. He's no longer in trouble for behavior at school and he's been able to make friends.
"He’s had not one trip to the principal’s office,” she said. “The biggest thing now is that he’s happy.”
Not everyone agrees about the PANDAS diagnosis, which was first described in 1998. Parents who suspect their kids have the disorder say they're routinely discouraged by doctors who aren't aware of the diagnosis or who actively reject it. There has been considerable debate about the role of strep A infections in the development of the disorder. Some experts believe that PANDAS may be a version of a better-known related disorder, Sydenham's chorea, in which antibodies attack the part of the brain that controls movement. The American Academy of Pediatrics is wary of preventive administration of antibiotics for strep infections, advising treatment of active illness.
But Swedo said experts do agree that there is a subgroup of children who develop sudden, dramatic cases of OCD, accompanied by a wide range of neural and psychiatric symptoms.
The new PANS label will generate additional research, even as Swedo and other PANDAS researchers continue to focus on the effects of strep. She hopes the increased attention will only expand awareness of the disorder among reluctant doctors.
“You have a treatable and perhaps preventable form of mental illness,” she said. “While we’re debating, these kids could be being treated.”
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This strikes a little too close to home for me. I never get worked up on these articles about weird disorders and syndromes and labeling things, but here's my experience. I was diagnosed with Type 1 Diabetes at 15 (36 yrs ago) (not too strange) but we have no familial diabetes, so we (numerous doctors and I) fiigure it's auto immune -related. I have been described as a very "atypical" diabetic. One of my daughters was "sickly" and a little girls with the common bouts with Strep throat--no big deal, happens to most everyone. She has OCD and some other "D's" related to emotional and anxiety issues. My youngest daughter developed "septic arthritis" in her left elbow (she was born w/o a right hand, no big deal unless you're 9 and your left arm is useless. "Daddy, why is God taking my other arm?") which was "cured" via IV antibiotics and surgery, but she will have arthritis for life. BTW she happened to be on steriods for another injury and they tend to immuno-suppressive. It was Strep bacteria (-not sure of strain) I then developed Bacterial Menegitis a couple years ago, that was directly attributed to Strep bacteria in my ears (and possibly throat). This very nearly killed me, but for my family, doctors, and faith. I'm exrtemely lucky to have just lost some hearing and frontal lobe 'efficiency', but according my kids, it did affect my personality. We HATE Strep bacteria and are very sensative if any of our 4 kids shows symptoms. The Drs are too and will get us antibiotics pretty quickly. But I will look into this 'PANDAS' more. We ahve been very fortunate, but clearly I see a pattern related to Strep bacteria and it's impact on weakened immune systems.
Just be attentative.
I had a kidney disorder related to my immune system as well, it was triggered by upper respiratory infections. I was treated, not my antibiotics but my an intense regimen of vitamins to boost my immune system, as well as an exercise protocol for the same reason.
I read this article with both interest and a health dose of scepticism. The reason for the scepticism is that I had frequent bouts of strep throat as a kid. It got to be so frequent (several times a year) that they finally removed my tonsils to try and stop it. The tonsillectomy did not completely stop me from getting strep, but it did reduce the frequency considerably. However, throughout my many bouts with strep I never experienced anything like this PANDAS or PANS condition. I guess my scepticism comes in when they start pointing to a cause and effect relationship between strep and PANDAS/PANS but can not explain why some kids have the reaction and others do not. It makes me think that there might be something else in play. Is it possible that the PANDAS/PANS is being triggered by high fevers that some kids will run when they get strep rather than the strep itself? Or maybe a combination of the two triggers it? I say this because despite having strep frequently, I am one of those people who does not tend to run high fevers. After all, there is ample evidence to suggest that high fevers can effect the brain. I think that there is a lot more research to be done before anyone can say with any degree of certainty that there is a direct link between strep and PANDAS/PANS. In any case, there are without a doubt other factors involved that they have not yet identified since the majority of children who get strep, even those who get it frequently, do not develop PANDAS/PANS.
I also worry about the treatment that some doctors are apparently using to combat this. Giving antibiotics as a prophylactic may help prevent the PANDAS/PANS from manifesting by heading off the strep infections, but this has it's own drawbacks. Overuse of antibiotics can lead to reducing their effectiveness for the particular patient as well as to the development of antibiotic resistant strains of strep and other diseases. Over-prescribing antibiotics may lead to a point where they no longer work for the patient or to the development of an antibiotic resistant strain of strep. This could leave the doctor with few if any options to treat subsequent strep infections, putting the patient at even greater risk down the road.
@JS: Skepticism is fine, but remember anecdotal evidence only disproves absolutes where one contrary example is needed to disprove a hypothesis. Otherwise it doesn't mean much when dealing with averages and biology, if anything, is about averages a lot of the time.
As far as the article goes, they did give a very plausible mechanism. Now it needs to be tested rigorously.
Mitchell
I had MSRA.... and I feel the toxins released by the Infection has allot to do with what happens to many surviving a near death Experience By virus or bacterial both very nasty...........
I suspect that strep is a trigger for an already genetically predisposed tendency toward OCD similarly to how some people get cancer despite good or bad lifestyle behaviors and some do not. OCD is largely genetic.
I am not happy with this article however for indicating that aggressive behavior is symptomatic of OCD when it is not. People with OCD are generally brilliant and quiet. Aggressive behavior has never been related to a diagnosis to my knowledge. Many people with OCD suffer with a lot of guilt and shame related to unwanted thoughts and feelings and are quite terrified of possibly exhibiting aggression.
That information in the article therefore makes not sense. It is a spurious correlation. This kid is angry and aggressive for an unrelated reason.
This misinformation spreads a nasty stigma on an already misunderstood disorder and that upsets me...
JS what they touched on briefly in the article is that some kids are born with a genetic predisposition for PANDAS (or PANS,) but the disease requires strep as a trigger to activate the symptomatic component. Which means hundreds of thousands of kids can get strep every year and not ever get PANDAS, because they didn't inherit the genetic problem. The few kids who did though, get a strep infection and it triggers the disease to start. Does that make more sense?
It will be interesting to see more investigation and study done on this! If it turns out to be the case, then I am glad it will be knowledge that can help some kids.
I bet this boy was fully vaccinated and then this happened. There are WAY too many factors that can contribute to this condition. The strep throat was probably just the last straw.
OK, I'm really thinking the medical community is just grasping at straws. just a couple weeks ago they blamed reduced effectiveness fo vaccines on microwave popcorn.
Wow. My son started exhibiting some wierd obsessive behaviours in first grade, such as constant throat-clearing, coughing, and snorting. The behaviors wax and wane with season, usually being worst around this time of year. We've had him to the doctors several times about it, without a satisfactory answer. Because he suffers from hay fever, we thought maybe it was allergy related. But recently, his teacher also metioned another OCD behavior to us that we hadn't noticed. What we didn't realize, until I read this article, is that the behaviors started immediately, and I do mean immediately, after he had strep throat and scarlet fever in January of 2010, followed 2-3 weeks later by a second bout of strep. The behaviors started after the second bout of strep.
I agree with JS about the over use of antibiotics, use when needed and thats it. Its the over use of antibiotics that cause strains of viruses and bacterica to be come resistant to them as well as mutate causing it harder to fight off not to mention antibiotics kill ALL bacteria in the body good and your body needs the good bacteria to keep your immune system in check and running properly.
This sounds exactly like what happened to my daughter. (Conincidentally also in St. Louis, also at age 3.) She has struggled with depression, rage, OCD all her life. Is now 27. Anyway to fix it when it wasn't diagnosed years ago! Sigh!!!! Also affected her reading ability -- concentration and comprehension. And she has a whole host of allergies too. (Immune deficiency?) Saddest of all was her alienation from everyone else. We did everything we could -- doctors, allergists, therapists, medication... And she still gets strep at the drop of a hat! How I wish I had known this stuff back then.
Don't suppose it could be damage caused by the heavy-duty drugs they gave the kid?
PANDAS is rare, if you are concerned that your child has it then talk to their pediatrician but odds are very good that they don't.
There are many other disorders and medical conditions that can have symptoms of aggression, rage, poor attention/concentration, learning problems, sadness, anxiety, irritable bowel, obsessiveness, etc. in children. Most of the time it's not PANDAS. Childhood depression can even manifest with all of these symptoms. A good child psychologist should be able to help in providing a diagnosis and treatment. They will often even recommend a visit/collaborate with a pediatrician to rule out certain medical issues.
Aggression is not a normal part of OCD. In children frustration and anxiety can lead to aggressive acts but one should be cautious in indicating aggression as a symptom of OCD.
Children can also act differently for several days or even a week or two after a major cold or illness. Regressing in maturity is very common but they often recover and catch back up.
Finally, many seemingly unusual behaviors of children are just a normal part of development. So don't stress out if your child goes through a phase of hand washing, cleaning, or even the opposite and leaving things a mess. Supportive and consistent parenting is often the best response to changes in behaviors.
However, if you notice a significant change in your child's behavior and they don't seem to be improving or getting worse then speak with your pediatrician.
As a parent of a child with PANDAS, I can speak with experience. NOT all childrens will get PANDAS/PANS/PITAND. It's not just caused by strep & has been SERIOUSLY researched for over 12 years now. We suffered for 3 years before we finally found what was wrong with my son.
I suggest that those who only just read this article take the time to go to the International OCD Foundation's website & see their Public Service Announcements about PANDAS/PANS/PITAND, or go to NIMH's wesite for more information... There is much to learn & thousands of families are suffering. It's not so rare & is a global issue.
"Its the over use of antibiotics that cause strains of viruses and bacterica to be come resistant to them"
Smartmama, viruses are not effected by antibiotics.
My child had PANDAS and we have to stay very aggressive with doctors in "urgent care" units when ear infections or sinus infections or strep shows up, because in our area, they are very hesitant to prescribe antibiotics because of the rise of the resistant bugs.
I am curious Why PANDAS never happened before in history. My BFF in school from the age of 3 onward never HAD PANDAS and was always suffering from strep---yes she too had her tonsils out, strep occurrence went down but not completely out!
So I wonder why now---could such be the result of lack of vaccines or have the basic drugs been tweaked so much that they are now more harmful then helpful.
OCD is a very serious condition and something must be causing such other than the Strep or an infection. Without researching off the top of my head--I'd say maybe it was those meds given to treat.
There are so many diverse medications available these days whereas years ago there were only a few available for this or that condition. Hence maybe the time has come to stop developing new meds (tested on animals) and go back to the basic of medications and mandate vaccines!
It is possible that we have grown over medicated---absolutely---is it possible that too much money goes into developing new meds for basic conditions--absolutely and is it possible that the venture into new meds cause more harm than good--absolutely!
Strep is a bacterial infection. Tonsils are part of the body's defense mechanism, and how they function is still not completely understood. Tonsils are often inflamed when an infection is present, and if you remove the tonsils, they're no longer there to get inflamed ... but you probably still get infections, and simply no longer have the tonsils trying to keep the infection from the rest of your tissues. Removing tonsils will not prevent strep. That's preposterous, though a good many doctors became quite wealthy taking tonsils out way back when.
As for PANDAS never happening in history, if you read the descriptions of the problem from the many parents who have responded here, you'll realize that these symptoms have always existed, and were simply written off (and treated, most likely incorrectly) as mental illnesses. Prior to that, if your child went from perfectly normal to having screaming fits and such, it was probably taken as a sign of "possession" and an exorcism was called for. With PANDAS, the antibodies formed to fight strep (and possibly other infections) cross the "blood/brain barrier" and affect the brain's receptors. Some children develop anxieties, some develop compulsive behaviors, some develop tourette's-like vocalizations, some develop muscular tics, and some become quite violent.
My daughter developed vocalizations and facial tics, and some anxieties. These came on suddenly, within days of her being infected with strep. They've gone away in time when she does not get exposed to strep, and have come back on at least two other occasions when she was re-exposed to strep. If you have a child with these symptoms, the direct link becomes extremely obvious.
Most children that are exposed to strep do not develop PANDAS. A very small number do. Just because your friend had strep and did not develop PANDAS does not mean that the affliction is imaginary. That's like claiming that because my grandfather smoked daily and lived to 85 years of age, that nobody could possibly develop lung cancer from cigarettes because my grandfather did not.
I had to convince my doctor to give my son antibiotics in late 1990's for his constant throat clearing. We'd visited the allergist (who suggested tourette's), took sinus X-rays, etc. His blood tests had come back with raised strep levels, even though he did not test positive for strep, after I read about PANDAS on the Internet. Within 72 hours of starting the antibiotics, the number of times he cleared his throat in an hour went from hundreds to three! He stayed on a low dose for a year.
PANDAS is rarely diagnosed and often ignored as a possible diagnosis.
This is interesting. Links between Strep and other illneses have long (relative to my 70-year liffetime) been known: rheumatic fever affecting the joints, and rheumatic heart disease, and prehaps others. Sometime betwee 2000 and 2005, I apparently had an undiagnosed episode of Strep. I had none of the typical symptoms: sore throat, etc. Since I had had several episodes in the decades before, I was sensitive to moderate sore throats: have one, and see the Dr. immediatey. Had no symptoms. Thus, had no treatment. Some time later, just felt bad. Blood work showed sterptococcal and enterococcal endocarditis and septecimia (spelling on those?). Spent a month on IV antibiotics, but still had heart damage: aortic valve had to be replaced. My guess is that, depending on where a secondary strep infection decides to occur, it should not be surprising that it can affect personality and behavior. This may spell the end to the old feeling that "it's jut a sore throat. It'll go away in a few days." Ha! The sore throat may go away, but what havoc can it wreak later?
That's similar to my situation with the menegitis; I actually went to the Dr. (not my own-who may have noticed the change in behavior) but in the same practice. She gave me antibiotics for an ear infection. We talked about how I needed to be (what I call) "a good little diabetic" with an infection. The next thing I knew I woke in ICU after an 11 day coma. Apparently I had driven home (about 2 miles), interacted with my family (negatively -I was told) and was found the next mrning passed out on the floor. The major change in behavior was with the dog, who refused to leave my side and was playing "Lassie" ("Timmy fell down the well!"). 3 weeks in the hospital and 8 months of physical, speech and 'mental' therapy and went back to work.--but I'm pretty sure if MY Dr had seen me, I'd have been admitted right then.
I understood that Strep Bacteria was pretty common in humans--but I'm still learning about it.
I hope you people who have been or whose kids have been taking a ton of antibiotics are using some type of probiotic. Drs downplay this...but then come out and say it's necessary, then downplay it again when drug companies throw a fit. It is VERY important to fix your gut after killing off ALL types of the bacteria in there with antibiotics. You need good bacteria in your gut to boost your immune system and digest food. Good health to you all!
Good point! My daughter who is on antibiotics for long period of times always takes a probiotic with it.
I just posted that my husband was in the hospital for 2 days after Levaquin killed all good and bacteria.
My son then 12 developed sudden OCD symptoms to a point he could not eat, bathe, dress himself, go to school due to all the the rituals he had to complete. It was exhausting for him, heart breaking for us. We had to do everything for him. We took him to all the big specialists, Hopkins etc..to be told there was nothing to be done. We went to psychiatrists, did cognitive behavior therapy, he was on different psych meds, nothing helped (only worsened his symptoms to a point he stopped talking because he then had to repeat himself). This was a straight A, talented and gifted child now failing school, no friends and unable to function. We knew what he had but all our doctors did not believe in PANDAS. He also tested positive for lymes . We finally found a Doctor who treated him with aggressive antibiotics therapy (9 months), vitamins, probiotics and a diet plan. He is now 15, no OCD symptoms, funny and normal. I thought I had lost my child. While I did not like the long term antibiotics, I wanted my kid back and this was the treatment.
This is interesting, as so many have OCD nowadays.
pretty sure many people had it before it just being either over-diagnosed now or properly diagnosed. hard to tell when there is so many $$$ involved...
There has always been a large population with OCD. It is one of the most prevalent anxiety disorders. 8% of the world has it.
People just didn't know what it was or what to call it until the early 1980s.
There's evidence of OCD behavior with wellknown figures all throughout history including Benjamin Franklin.
There is also the distinct possibility that the patients had been consuming food and milk from cows treated with BGH and as a result, antibiotic treatment had no effect on their already overloaded systems. Chemicals in our foods are killing us slowly, and the government is turning its back on the problem and kowtowing to the drug industry and chemical companies such as the giant Monsanto, whose sole objective is profit.
MILee, I agree with you on the chemicals and such in our foods. When my mother was a kid, she didn't start maturing sexually till she was 17 or so. I was 15. Kids today are 9 or 10. There are so many chemicals in our foods. Doctors so quick to push drugs for one thing or another, it's not surprising that we are feeling the affects.
When I was a kid, the cure for constant strep was having your tonsils taken out. No continual drug taking. My older brother got strep 3-4 times a year till they finally took his out when he was about 14 or so. He's not OCD and never had strep again.
I'm certainly no doctor or scientist, but if I had a child with OCD I'd look beyond the doctors and their drugs for other causes and treatments.
This indicates that our body's immune systems are failing - from a combination of a diet of processed foods, toxic endocrine disruptors from the environment (BPA, fluoride, mercury, bromine, dioxins), avoidance of sunlight and subsequent deficiencies of vitamin D, and overuse of antibiotics and vaccines. These problems will only continue to grow. Welcome to the future of our health. No amount of new drugs will slow this down.
well said , unfortunately processed foods , antibiotics , and industries/people that don't care about environmental impacts will continue.... its all about money making....it is in our nature (our true predator)
Our immune systems are better than they have been historically at any point in time. We should not jump on the band wagon that somehow our daily life is destroying us with out thinking first of the more likely contributors to these triggers of an over acting immune system.
What we are seeing is more likely a product of us living in such crowded times Public transport, schools, shopping malls.. Strep throat relatively common with 37% of children suffering from it at some point before the age of 5. In the past you might only ever see your own family and infection would be controlled and confined to that family, however now we live in a time where we are exposed to a vast and varying array of infectious organisms.
krestov dont use logic to stop the fear mongering. that would be - illogical...
Look around, autoimmune diseases everywhere, in growing numbers: hypothyroid, lupus fibromyalgia, ADHD, autism, etc. How else do you explain them? These are clearly diseases of modern living, because they're most common in developed countries.
Stanmrak, you're the man! Modern living diseases, has someone tapped into this??
My family has always grown much of our own food, and what we buy is organic. We cook everything from scratch because of my wife's food allergies. My daughter came down with PANDAS after exposure to strep, so I'd venture a guess that your hypothesis is just a guess based on your opinions and your agenda rather than based on science.
As far as these "modern diseases" being only found in modern societies, you're wrong there as well. There was concern that aging men in the US were being found with high levels of pre-cancerous cells in the prostate, and all sorts of speculation began over what it was about our society was causing this. Turns out that these results appear globally with age, and the US was simply the only society that was testing for it.
If you read some of the PANDAS symptoms that parents here have posted, you're realize that a several hundred years ago, the diagnosis would have been "possession" and an exorcism would have been the treatment. We're seeing more of these diseases because we now understand them, and can classify PANDAS as a reaction to strep rather than as an undefined "mental illness". If you think undefined mental illnesses don't exist in third-world societies, you haven't traveled.
Thank you so very much for bringing this knowledge to the general public. Those of us who have children with PANS/PANDAS struggle everyday to educate our doctors, educators, friends, and even family as to why our children get sick so often or have suddenly changed. There are many great resources out there for parents who are searching for help, including the PANDAS Resource Network. For more information: pandasresourcenetwork.org
Why am I confused? No offense seriously, I don't get it... choking kids, facial tics, and throwing a chair related to OCD? I am 37 years old, diagnosed with OCD and take Prozac. I'm no expert, my husband is a psych doctor but that doesn't matter either. I have stress induced OCD such as cleaning, neatness, imperfection, and organization.
And I'm serious when I say I have never had strep physically. I've had several CBCs due to my medications and nothing out of the ordinary ever showed up. Maybe I'm totally reading this article wrong. But I would have said Tourette's too. Once again not a doctor :)
jellybeaner -
OCD effects everyone differently. I am 27 and was diagnosed with OCD about 6 years ago. While your OCD fears revolve around cleanliness, my fears are centered on choking and food allergies. I constantly feel as if the food I am eating is stuck in my throat and spend a great deal of time clearing my throat and humming. The symptoms described in the article sound very similar to my situation. Granted, I've never felt compelled to throw chairs or anything like that but OCD is brought on by anxiety so I would imagine that everyone has different fears and nervous tics that set off their OCD.
This is a disorder that is specific to children - thus Called Pediatric Autoimmune Disorder Associated with Strep. That is why the criteria does not apply to you. Tourettes is considered part of this illness - sometimes but not always being exhibited. It is a difficult illness to explain but it is entirely different than an adult with OCD. Unless you have a child with the illness you probably would not understand. I am quoted in this article and have a child with the illness.
Yes, this is a little off if you ask me....throwing chairs, choking kids are not signs of OCD? Very poorly written article if you ask me.
Maybe there are several reasons why people develop OCD.
My OCD was me always washing my hands. I do it constantly. There is a long running joke in my family that my OCD started when I was little because my dad hated holding my sticky hands so he would make me wash them. Looking back I can't help but wonder if that is actually the cause of my constant hand washing.
Why label it as OCD? Isn't a fear a Phobia? Pseudodysphagia-the fear of choking. It didn't scare me that the lines in my towels don't perfectly match up. It stressed me out, that's why I take Prozac and Clonazepam. I would think about it all day unless they were lined up to my standards. Don't leave the house until it's "perfect".
I guess I have always thought OCD is a brain disorder. Maybe I have PANDAS, I have been diagnosed with Epilepsy. My daughter has it, my aunt has it, and my father's aunt has it. Maybe we all have or had strep and not a genetic disorder.
Or maybe it is just a poorly written article.
I agree, none of these aggressive behaviors are related to typical OCD symptoms. This kid might have OCD but those are NOT OCD symptoms.
This article is misleading and harmful to the reputation of those who suffer from OCD which is already incredibly misunderstood.
To Anonymous speaks,
The rage and aggression this child showed is hallmark of children with PANDAS. It is true that people suffering from OCD are not aggressive.
PANDAS is truly a different disorder, with OCD as one of the symptoms. PANDAS should not be described "OCD caused by strep"- but as a constellation of symptoms, including tics, sensory difficulties, urinary problems, OCD and more.
I have never heard of anyone obsessed with throwing chairs. That's called a bad boy, not OCD.
Thank you jellybeaner. This correlation appears a bit of a stretch to me too.
We pay close attention to sick kids. We look at everything and in the process see more than before.
Many parents of autistic don't know until the child consistently doesn't correspond to others of the same age. Lots of studies about how long term therapy helps kids. Many don't include the maturity gained with growing older.
In a family full of ADD'ers, every year we habitually educate the new to us teachers with predetermined solutions derived from uninformed viewpoints.
This article adds to the problem, not the solution.
Thanks Anony-53 for the clarification!
The title of this article is SO misleading and harmful to progress.
You're confused because you didn't understand the article and were mislead by the headline. PANDAS is not OCD. PANDAS can cause symptoms that mimic OCD.
Most children who contract strep do not get PANDAS. PANDAS is a rare reaction to strep. Additionally, not everyone who has strep realizes that they have it, as strep causes a wide range of symptoms.
My daughter was finally dx and successfully treated (with steroids, antibiotics and IVIG) for PANDAS several years ago. We went for a year and a half with no diagnosis or real treatment except for anti-psychotics and SSRIs which did not help. We were terrified and have never seen anything like this. At age 5 everything about her changed, in August of 2007. She was very severely ill and school became impossible eventually. But we found Dr. Kovacevic online (). I credit him and a local doctor for saving her life. He does telephone consultations and answers emails back very quickly. This is a horrible illness which haunts the family for life. We live in fear of strep. The people in the urgent care centers think we are overboard but they didn't live through this horrible syndrome. For us, it is not exagerating much to say it is 'exorcist' like.
JellyBeaner- this is different than run of the mill OCD. Parents can frequently pick the exact day this starts (for us it was August 12, 2007) It also can manifest in other ways such as anorexia, separation anxiety and a large percentage of PANS children have some sort of urinary issues along with it. (My daughter also had movement issues which leans a bit more toward Sydenham's Chorea. She also had cardiac changes (per EKG) but her ECHO did not show any valve disfunction. A few years earlier, she also had post infectious glomerulonephritis which is known to be caused from strep too, and also autoimmune causes.) It is not only OCD but very bizarre behavioral issues which were completely different from the child's normal personality.
Thank you - In your short little paragraph I think you made this much more understandable than the whole entire article. I have a daughter with Tourettes, so I was able to grasp the difference between standard gradual symptoms associated with that syndrome and the sudden onset of all symptoms of PANDAS, but admit that I was still somewhat confused until I read what you wrote. Thank you again.
Hmmm. When I was a kid, back in the 60,s, I had repeated Strep infections. Sometimes as many as 4 times in one winter season. I had diseased and decaying tonsils which were removed at age 18. My older sister had a history of Strep infections and our Mom had Strep which went to Scarlet fever and resulted pneumatic fever. None of us (that I know about ) ever developed any symptoms of an OCD-like condition. We were treated with penicillin. I have to wonder if it isn't the treatment modalities in use now that might be the source of the neurological manifestations known as PANDAS.
Treatment of choice for strep today is the same it was years ago - penicillin and amoxicillin. In people that are allergic to this, they will use cephalexin.
My grandfather smoked daily and lived to 85 without developing lung cancer. Does that prove that smoking doesn't cause cancer after all, and we've been wrong about that all these years?
No.
Most people who get strep do not develop PANDAS. PANDAS is a rare response to strep. Your having had strep and not developing PANDAS proves nothing.
If you had taken the time to read the responses here of the numerous parents who's children have suffered from PANDAS, you'd realize that it IS strep that causes PANDAS, and not "treatment modalities", "modern living", and other such nonsense. PANDAS children go from happy, normal, healthy and well-adjusted to a frightening mess within DAYS of strep exposure, and simply getting rid of the strep and letting time reduce the offending antibodies resolves their condition, in most cases. For those of us who have to live with this in our children, the link is clear.
Panda dad-----I don't know numbers, but I would suspect it is not as rare as we think. Think of the increase in mental disease, autism, pandas, adhd in kids today. There are a lot of variables. I still struggle with my kids whether it is auto-immune, failure of amoxicillin, vaccine reactions, predisposition or whatever. My gut tells me this is far more common now, like pre-65-70 years ago since it is becoming resistant to the penicillins. Drug co make more on the sexy drugs rather than the boring antibiotics. Why have there been no new antibiotics???????
Streptococcus. Nasty little bugger." How's your wife doing?" "Oh she died." " Wow, sorry to hear that; how did it happen?" "Well she was doing just fine, had been home from the hospital for two months, woke up one morning feeling a tad poorly so we went to the hospital again. It seems she picked up some form of Strep there, at the hospital, some gram+ bacteria, a new one or some mutation of an old one. Yes, it killed her a week later."
Wasn't it this very same website that had an article recently on the filthy hospitals or was that cruise ships. It was both.
OCD? This is an interesting "hypothesis." I have been following the fighting among the "experts" as they work to rewrite the new DSM? It has not come to knock-down punches yet, but I read they are jumping up and down on the tables and screaming at each other. Do I have a diagnosis for them?
I appreciate good science, the more pure Socratic form that we were all taught in school right? The people at Focus Adolescent Services, www.Focusas.com have been floating an "idea" for my intellectual consideration,(that would be my rather limited gray matter). It is not a concept or an hypothesis. It is merely a thought, a simple "maybe" that may develop into a working hypothesis depending on the feed back. It brings to question many of, if not all of these so called "mental disorders" that the DSM experts are working to define and add to like OCD, Bi-polar; a big fat book. My oh my. They are suggesting that I/we consider "trauma" in ones life and/or the results of "trauma." So far my thoughts have been that perhaps trauma is the cause of many of these so-called mental disorders. Then again it could very well be streptococcus, or any number of things.
Hmmm. I see a new defense for murder. BUT JUDGE... I had strep throat!
it couldn't be the heavy metals, anti-freeze ingredients, and aborted human fetal tissue we put in their vaccines?
We will discover in due time that the root cause is the over vaccination of our children. By vaccinating for most known diseases, our children are not allowed to have their natural and most efficient immune system evolve naturally. And this lack of a natural and strong immune system weakens the body's defenses and ability to cope with the vast amount of bacteria and viruses that exist in our world today. Thus the ease and prevelance of diseases in children and even adults today.
And thanks to the over vaccination of livestock and rampant use of antibiotics given to livestock, we have allowed for bacteria to practice and perfect their evolution into antibiotic resistant strains. This overuse of antibiotics exist in the human population with no less contribution to the antibiotic resistant bacteria as well.
So what do we think we are doing when we try to work against nature rather than work with nature? The end result is all of the disease phenomenon that have become a regular part of our society. Want to know the answers, look at what we are doing with abusive practices with our modern medicine.
I object to the characterization of strep infections as "common". These have been the scariest infections for children as long as I can remember, which is the 50's. If the "experts" are just now recognizing long term effects it's because they haven't been paying attention or maybe they quit reading the "older" information.
I think they mean just that they are common occur frequently, not that they are common and therefore not serious.
Maybe just a good swat on the bottom would straighten out most of these kids. Quit trying to find reasons outside of a kid testing his boundaries.
Seriously?! Get real. Your ignorance speaks volumes in your statement.
I am the mother of seven children. Never been afraid to discipline my children and set boundaries. Last year my six-year-old, happy-go-lucky little boy was suddenly gripped by terror of all things dirty. I don't think it was a lack of bum spanking that did it, but rather the reoccurring strep infections.
My child went from singing solos and playing guitar in front of hundreds of people to being afraid to go to school because she might get called on to speak in class. She also started to make "yawning" motions incessantly, and inhaled sharply, making sounds like an owl. I'm sure she was just testing her boundaries. She was diagnosed with PANDAS, and I foolishly have kept her symptoms at bay by hustling her off to urgent care for antibiotics at the first sign of strep infection for the past three years, when I should have simply been spanking her.
Thanks for your ignorant comment.
Bill H---you are wrong. Discipline has little to do with this disease. Boundaries with some kids yes, kids with this disease---not.
My God, this is old news. This PANDAS thing never got much traction, but it lives on at MSN. Must be a slow news day.
Yes, it's pointless to publish an article that might help parents of children with this affliction, even though many pediatric practitioners are still unaware of this condition.
Perhaps the time should have been spent discussing the medical causes of the mental conditions that cause people with too much time on their hands to troll on the internet.
Pandas Dad----amen!!! That was funny!!!!
Including yourself. BTW, what "affliction"? The link that no one can prove? My, how we as a people suffer from mysterious maladies.
My son who is now 34, has never had strep, but he did have viruses and ear aches quite frequently as a youngster. Doctor visits were pretty regular and he was treated with antibiotics on most occasions. Not sure why to this day but I believe that when he was a child, the knowledge was just not there to consider further testing. He exhibited signs of OCD as a child but not to an extreme. As both a child and an adult, he has continued to exhibit these signs along with a short frustration level, which then is followed by violent outbursts. He has trouble holding a job, is unwilling to pursue the necessary skills to further his education, and has "collected" various figures and memorabilia to the point our basement looks like a warehouse. Trying to encourage him to go see our doctor for evaluation is a waste of time as he thinks he is just fine. I wish there had been more options open to us when he was a child because it is a major problem now with no apparent solution.
My son who is now 34, has never had strep, but he did have viruses and ear aches quite frequently as a youngster. Doctor visits were pretty regular and he was treated with antibiotics on most occasions. Not sure why to this day but I believe that when he was a child, the knowledge was just not there to consider further testing. He exhibited signs of OCD as a child but not to an extreme. As both a child and an adult, he has continued to exhibit these signs along with a short frustration level, which then is followed by violent outbursts. He has trouble holding a job, is unwilling to pursue the necessary skills to further his education, and has "collected" various figures and memorabilia to the point our basement looks like a warehouse. Trying to encourage him to go see our doctor for evaluation is a waste of time as he thinks he is just fine. I wish there had been more options open to us when he was a child because it is a major problem now with no apparent solution.
My son was suffering from the same symptoms as mentioned in your article. After 3 years of on going treatment with antibiotics, I was very concerned about side effects. My mother recommended to have the child make gargles with hydrogen peroxide, so I started by training my child at age 7 to do mouth wash gargles with water, after that I started to add the solution to the water until he could tolerate the hydrogen peroxide without the water. He would do the mouth wash gargles procedure before going to bed and just before going to school. My son is now 9 yrs old, before our home made treatment he was diagnost with chronic step throat syndrom, now after treating him with this home made remedy, his glands cleared up, no more fevers, nervous tics, no more visits to the doctor and best of all no more antibiotics. Our doctor was amaized at the results and approved to continue with the procedure as needed. He gargles every so often as a preventive measure. We are very happy that this worked out for him and the rest of our family.
There is no "testable objective evidence" that Pandas is caused by infections. That's just someone's opinion because the infection appeared before the psychotic-like episodes.
It is more likely that the episodes of bizarre behavior and violence are caused by Subliminal Distraction exposure.
Subliminal Distraction, explained in fist semester psychology as a normal feature in our physiology of sight, was discovered to cause mental breaks for office workers forty years ago. The cubicle was designed to block peripheral vision for a concentrating knowledge worker to stop it in offices by 1968.
It's a normal part of our physiology that will cause bizarre behavior anytime, and anywhere the conditions for it exist and exposure lasts long enough.
No one has investigated to eliminate it as the cause of pandas.
Well let's see...my son's behavior just went completely nuts at school within a week of totally normal behavior. His handwriting went from neat to a scribbled, erased until it gets holes in it mess. We went to the doctor, got a blood test, his ASO titers, AntiDNase (strep antibodies) and C1Q binding assay (autoantibodies) were all extremely high. He's been on augmentin for 2 weeks now & his behavior is getting back to normal and I'm betting if we had his bloodowork repeated all those levels would be dropping. As for your theory that if I stick him in a cubicle he'd be just fine, I prefer to take the advice of his pediatrician and neurologist & give him antibiotics instead.
By the way, this is about the fifth exacerbation of PANDAS with him and every time the behavior gets bizarre, I take him to the doctor, they test him for strep & they find it along with clear presence of autoantibodies in his blood. I'd say that's evidence. However if your child ever gets it & you decide to test your Subliminal Distraction cause, do let us know if the cubicle treatment works. In the meantime, my son is suffering from brain swelling so I & most other PANDAS parents out there prefer the medical treatments that have been proven to work.
Or you could be completely wrong, and I'll take the NIH and the word of specialists at Johns Hopkins over that of some random person on the internet.
LK Tucker-----Your 1st statement is wrong and clueless. There is plenty of evidence linking strep and Pandas, along with other infections. The whole point is antibodies attacking the basal ganglia causing inflammation, thus the symptoms. What does the basal ganglia control in kids----The basal ganglia are associated with a variety of functions, including voluntary motor control, procedural learning relating to routine behaviors or "habits" such as bruxism, eye movements, and cognitive,[1] emotional functions. The symptoms as described by parents mirror very closely the the functions of the BG.
If you look at many diseases, there is growing evidence of viral and bacterial infections causing many of our maladies-----not just this one.
Autism and Vaccines anyone? Direct quote from the article about PANDAS : "The trigger is believed to lie with the antibodies that are normally produced by the body to fight infection. Usually, in the case of a bacterial infection, the antibodies attack the invading bacteria and help elminate them from the body. But in the case of PANDAS, for instance, researchers believe patients mount an unusual immune response in which the antibodies may mistakenly attack the part of the brain that controls emotions, behaviors and physical movements." Could this possibly be what happens in kids with autism but to a more severe degree than to those kids with PANDAS? Given that the medical community can not even agree that PANDAS exists, I doubt they've looked into it as a possible cause of autism. Vaccines contain either the dead virus/bacteria or at least the part of it that triggers your body to produce antibodies. It has nothing to do with the mercury in vaccines rather the body's incorrect immune response to the sudden onslaught of so many foreign bodies. Kids with autism also have problems with emotions, behaviors and physical movement (motor planning, fine motor skills, gross motor skills, etc) but to a greater degree. Yes, kids are exposed to hundreds of germs every day. But they are introduced to them gradually as they put things in their mouths, etc and do not have multiple doses strong enough to elicit a full on immune response given to them at once. I am all for vaccines in the long run and don't think they should be eliminated. I think we just need to adjust the schedule and how many we give at once to keep from throwing these children's immune systems into overdrive.
The autism/vaccine link is an old outdated disproved myth.
It ain't what you believe that counts. Belief is speculation. It's what you can prove.
Sorry Krestov, you couldn't be more wrong. The debate will continue as long as I live and breathe. My effected son who is aware of his condition, and accepts it, will further educate you and other folk who choose to ignore it.
This is more proof in the pudding if anything about the dangers of upsetting a immune system. Either by strep, flu, or injected strains of viruses, etc, a immune response that is triggered response could always go askew. Specially in young bodies where the immune system is not matured.
I continue to pray that these findings will continue to help cure people..
Vaccines likely play a part, but I think this is a multi-faceted cause that will never be clearly identified. Overuse of antibiotics has created an entire generation of people with poor gut health, and the gut is directly connected to the brain. Poor gut health in a pregnant woman gets passed on to her fetus.
I'm sorry bigmike this is not my will to discount anyone's condition which I hope one day pin-point the cause, but I will continue to try and educate those who continue with the vaccine myth which is based on a single research result which has since proven to have been falsified, There are now many other peer reviewed papers which show no epidemiological connection between autism and vaccines.
The "rate" of autism is equal in vaccinated children as it is in non-vaccinated children.
Krestov, why have 2-3 docs in my journey with my kids asked about "any bad reactions to vaccines?" This is like asking Congress to investigate itself and incriminate themselves. You really think the med community and big pharma would tell the truth if there were negative reactions to vaccines???? "Oh so much good has come from vaccines!!!!!!! The good outweighs the bad and we can't have truth---it will cause panic. Reality is not always a happy truth-filled place---but it is reality.
Because asking about vaccine reactions before administration is the same as asking if you have any history of reaction to any medication before prescribing any other medication. It's called prudence. All medications have potential reactions. No one is trying to hide anything.
Take the tonsils out and avoid the strep throats and sickness. Got my youngest out last summer and hasn't been sick since. Older son starting high school will get his out this summer too. It is time to go back to removing tonsils and quit getting strep throat and treating with antibiotics, etc. Peditrican did not suggest tonsils be taken out, but my insurance paid anyway after seeing an ENT and his recommendation of removing them. I think half the time the peditricans want to keep you coming to the doctor because that is how they get paid if your kid is sick.
My daughter has PANDAS and we had her tonsils removed too. Her symptoms completely went away and she was cured for 9 months--no meds, no issues, back to being "normal". Unfortunately she then contracted Lyme and all the PANDAS symptoms came back in full force. I write this not to scare you but to let you know that it isn't just strep that causes it. Any type of bad infection can make it come back. She is now back on a cocktail of meds and no end in sight. Antibiotics no longer seem to really work. Considering IVIG.
The role of tonsils is still not understood. They attract bacteria that invade the body, possibly to reduce its presence elsewhere. Take out the tonsils, and you will no longer get infected tonsils. That's all. You will still have strep, it just won't be concentrated in an obviously sore area in the back of your throat.
For children with PANDAS, this may actually be worse, as they'll have strep exposure longer before signs of it (inflammed tonsils) appear.
This isn't my opinion; my child has suffered from PANDAS, our original pediatrician recommended her tonsils be removed, and both the NIH and a Johns Hopkins specialist indicated that it was probably the worst thing we could have done.