EVERYTHING you NEED to know about PANDAS! (so far)
What You Should Know About PANDAS, a Serious Condition Associated With Strep Infections in Children
The rare and sudden appearance of obsessive-compulsive disorder or tics after strep infection still defies explanation by researchers, leaving families devastated.
By Paul Raeburn
Medically Reviewed by Sanjai Sinha, MD
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When Max was three, he was a bright, gifted, happy little guy, his mother recalls. “He never had a temper tantrum, he was a really good eater, at the 90th percentile for height and weight,” she says. Until he woke up one day at three-and-a-half and stopped eating. “He said he wasn’t hungry,” his mother says.
His weight didn’t change for the next five years. He weighed 39 at three years of age, and 39 when he was eight.
That wasn’t all. At three-and-a-half, he went from being relatively content to having these meltdowns where he would punch, hit, fight, spit, and take all his clothes off. “He would threaten to kill us and threaten to kill himself,” she says. A little while later, tics developed. He started with eye blinking, shoulder shrugging, and then went into sniffing, clearing his throat, raising his eyebrows, sniffing his fingers, and shaking his head.
His mother, Elizabeth Spaar, DO, took him to 15 different specialists, who diagnosed Max with oppositional-defiant disorder, Tourette’s, anxiety, feed disorder, depression, and autism. None of those diagnoses led to improvements for her son. So she kept searching.
During a severe flare up of symptoms, he tested positive for strep despite having no strep symptoms.
“I almost fell off my chair when I saw the results,” Spaar says.
She finally diagnosed him herself: He was suffering, she says, from PANDAS — pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. That was the only thing that described all of Max’s symptoms. PANDAS is thought by some to be linked to strep throat and other streptococcal infections in children. But not all doctors agree.
With her diagnosis, Dr. Spaar put herself and Max into the midst of one of the most contentious debates in pediatric medicine.
What Is Pediatric Autoimmune Neuropsychiatric Disorders (PANDAS)?
PANDAS splits doctors and researchers into two camps. One says it is a dangerous condition that is far too often overlooked by pediatricians, who fail to recognize the signs. The other says there is no link between strep and the constellation of symptoms seen in PANDAS.
PANDAS was first described in a 1994 paper by Susan Swedo, MD, chief of the pediatrics and developmental science branch at the National Institute of Mental Health in Bethesda, Maryland. She and her colleagues were studying obsessive-compulsive disorder in children when she discovered a new subtype of OCD, in children in which antibodies produced in response to strep infections begin to attack healthy cells, too, often including cells in the portion of the brain known as the basal ganglia, which is related to behavior and movement.
Their first observation was that the children with this unusual form of OCD had a sudden, dramatic onset of symptoms. The symptoms could appear overnight and would reach full-scale intensity within 24 to 48 hours.
The dominant theory now is that it’s an autoimmune reaction, she says — a case of the body’s immune system turning against normal cells in the body. The diagnosis has been broadened to include other infections besides strep. That’s now known as PANS, for pediatric acute-onset neuropsychiatric syndrome.
Today, Spaar has what she calls an integrative medical practice near Pittsburgh, where she uses conventional treatments and also vitamins and supplements to try to heal children with PANDAS, including Max.
“It’s much less controversial than it used to be,” she says. “There’s substantial evidence in favor of it both in research and clinical experience. The controversy is fading.”
Some of the nonstandard treatments Spaar uses with PANDAS are not covered by insurance — including steroids and intravenous infusion of immunoglobulins, which costs ,000 per treatment and sometimes qualify for coverage. The idea behind these treatments is that they are immunomodulators, according to an article published in February 2015 in the Journal of Child and AdolescentPsychopharmocology, meaning they might block the immune-system attack on healthy cells.
Steroids suppress the immune system, Spaar says, and “a short burst of steroids can bring down acute inflammation in the brain the same way it would if you took a short course for bronchitis or poison ivy.” The exact way that imunoglobulins help is not known, she says. “The end result is it reboots the child’s immune system and stops the dysregulation causing the issues.”
Not Everyone Agrees That PANDAS Is a Real Disease
Stanford T. Shulman, MD, a professor of pediatrics at Northwestern University in Chicago, takes a radically different view.
“It’s extremely controversial,” he says. “I think the fundamental problem is that the best scientific studies that have been done, have not been able to confirm that strep is related to these behavioral abnormalities.”
For that reason, various medical organizations, such as the American Academy of Pediatrics, “all have official statements related to strep and its complications and don’t endorse that this is a proven relationship.”
But is the research good enough to prove the negative — that there is no link? “I think in recent years the studies have been designed very well, and they should have identified a link if a link exists,” he says.
Dr. Shulman is a past president of the section on infectious diseases of the American Academy of Pediatrics. He has no disagreement about the seriousness of the condition. The question is: What causes it?
“There are children who have serious neurobehavioral abnormalities without a doubt,” he says. “And some of them are so serious as to be incapacitating. So it’s natural for parents, doctors, to try to do something to help the patients. ... Sometimes when there’s no real proof of a connection, people are willing to give the idea [of PANDAS] a try.”
His suggestion for treatment for children with symptoms of PANDAS is not manipulation of the immune system, but expert psychiatric or psychological care, he says. “That’s most likely to help them.”
What to Do if You Suspect Your Child Has PANDAS
One of the problems with PANDAS is that there is no blood test to definitively identify it (as is the case with most psychiatric disorders). It’s a clinical diagnosis, which means that the diagnosis depends upon taking a careful medical history and performing a physical examination. Doctors look for two principal criteria: The presence of significant obsessions, compulsions, or tics; and an unusually abrupt onset of symptoms.
Spaar’s experience with her son, Max, now 12, is typical. “He’s a classic PANDA,” she says. “Textbook. The problem is physicians are unaware of PANDAS. There is little knowledge of it.”
She began by taking him to his pediatrician, who said she shouldn’t worry but should feed him only at mealtimes. A psychiatrist prescribed medication for violence. Another tried behavioral therapy. The doctor said Spaar was making too much a battle of it. They put him in a special school to reduce his stress, and he still had meltdowns. He seemed to get better for a time. He started to eat. But it was up-and-down. “And then, a year ago, he got dramatically worse,” she says.
He was treated with antibiotics, ibuprofen, steroids. “He didn’t respond,” she says.
Meanwhile, word spread of Spaar’s interest in PANDAS — partly because of her experiences with her son — and now 90 percent of her patients are children with PANDAS. “So many kids, and so few doctors,” she says. She uses intravenous immunoglobulins, plasmapheresis (a process to strip out potentially harmful immune cells), and drugs used for other autoimmune diseases.
If you’re concerned that your child might have PANDAS, you should look for doctors who specialize in PANDAS treatments. You might also consult your pediatrician, who can help you with the difficult job of evaluating which doctors and treatments might be most helpful to your child.
The National Institute of Mental Health suggests that parents consult the International OCD Foundation or the PANDAS Network to find a doctor knowledgeable about PANDAS.
Max is improving. And Spaar spends as much time as she can spreading the word to other doctors. “I don’t want kids to end up like my son,” she says. “If my son had gotten treatment at three-and-a-half, our entire family history would be different. I mean, he’s not going to recover 100 percent.”
If he’d been diagnosed sooner, she says, he might have.
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