PANDAS Disease Controversial in Medical Community
Tomorrow, we'll learn more about Bailey's journey and his treatment by a Chicago-area doctor.
Bailey Evert is 12 years old. He's like a lot of 6th gradersâ€”he likes playing basketball and drawing. He lives with his mom, dad and little brother in Hinkley, Illinois, and he's a good student.
ROBIN: When you went swimming was Andrew there?
BAILEY: Yeah. And we had fun.
But times weren't always so good for Bailey.
BAILEY: I had lots of anxiety where I started my body started to feel numb, and I couldn't control it.
HILL: Was that a little scary?
Bailey was diagnosed with a rare condition, known as PANDAS. That acronym stands for pediatric autoimmune neuropsychiatric disorders associated with streptococci.
The syndrome creates an unusual mix of physical and psychiatric symptoms.
HILL: So, what were the things you were worried about?
BAILEY: Um, I was worried about school, like how far it is and stuff. Like at school was 20 or a half hour away. I was worried if something really goes wrong there.
HILL: What were the things that you would worry about that would go wrong there?
BAILEY: Well, like choking on my food or something or if there was a really bad emergency.
HILL: Did that ever happen?
PANDAS is linked to things like intense anxiety, severe attachment disorders, tics and Tourette's syndrome, and obsessive-compulsive disorder.
Bailey started struggling with all of these symptoms when he was just 7 years old.
His mom Robin says he changed overnight.
ROBIN: He woke up and he had OCD. He was germaphobic. He wanted to wash his hands constantly. Hot hot water and he moved into taking showers during the day, four or five showers, hot showers during the day, um. We didn't know what to do.
Until then, Bailey was a relatively healthy boy, weighing 47 pounds.
Like any kid, he'd had an assortment of childhood colds and flues, including strep two weeks earlier.
ROBIN: And the OCD moved along to the point where he was hoarding things, food candy, toys. You know, he'd hide all the toys from his brother. It was hard because we didn't know what happened. And then he started um to stop eating. And he slowly slowly slowly stopped eating.
HILL: So there was no food?
ROBIN: No, there was no food. At all. No. He got down to about 37 pounds.
HILL: Why didn't he want to eat?
ROBIN: He said that he felt like a tickle in his throat and he, what they say is that he has a fear of choking. If he doesn't eat, he won't choke. But they did a swallow study. We went to a speech therapist to see if it was a food aversion, where he could eat food. We saw multiple, multiple doctors and experts and therapists to try to figure out what was going on.
Seven months later, Bailey struggled with dehydration and constipation.
His parents took him to Advocate Good Shepard Hospital in Barrington.
There, doctors suggested Bailey see a therapist and psychiatrist.
They prescribed anti-anxiety medications and anti-depressants.
ROBIN: There was no improvement at all. He actually went down hill. He was going down hill since 2005 and he just kept going.
During the slide, he developed new symptoms, a snorting tic, hoarding, severe separation anxiety.
HILL: What is bailey's behavior doing to your family life?
ROBIN: It was extremely difficult. It was extremely overwhelming. It was hard on Andy and I because we started blaming ourselves for it.
Robin says just getting to school became stressful for everyone.
ROBIN: The separation anxiety got really bad. And we would get to school and he would get out of the car and take off. And um, it was really hard. When we would actually get him in the school, he wanted me to be there, he wanted me to stay.
Eighteen months after the symptoms started, Bailey was down to 37 pounds.
His fear of swallowing worsened.
Doctors suggested that he attend a therapeutic center that specialized in teens with anorexia nervosa.
ROBIN: They had him in a room with teenaged girls who had anorexia and they had him weigh in in the morning and they monitored his food. And the first day he came out he was exhausted. He didn't know what they were talking about, they were talking to teenagers and he's a young, 9 years old boy.
A few days later, Bailey left, and was admitted to Children's Memorial Hospital in Chicago.
There, doctors inserted a feeding tube. And, they placed him on the psychiatric ward.
ROBIN: We couldn't see him. They were using us to get him to eat. And if he didn't eat, he couldn't see us. And he couldn't talk to us on the phone. There was a time for about five days where we had no contact with him. We had contact with the doctors and nurses. It was really, extremely difficult. We wanted to take him out but we didn't know what else to do.
With a little bit of pasta and a feeding tube, Bailey gained a little weight.
Three weeks after he arrived, he went home.
Robin recalls how his behavior issues remained.
ROBIN: It's hard. He does not want to play with friends. He gets anxiety when there are a lot of people around. We really couldn't go out and visit our friends. We couldn't got as a family to the restaurant. We couldn't really do much at all. It was really hard to explain to our friends why, because we didn't know why. We just wanted him better.
HILL: Were you fearful at any time that he wasn't gonna get better
ROBIN: Oh, yes. Very long time. Especially when he was at children's and after children and before we had met up with Dr. Kovacevic. uh. We thought that we, we were thinking that in the future he'd have to live with us and that we would have to take care of him for the rest of his life. And then what do we do when we're gone, you know. Will his brother be able to take care of him, or his aunt? It was hard, we didn't want to go down that road at all, but it definitely was there, yeah.
But, a coincidence brought new information to Robin, who worked at a doctor's office.
ROBIN: In December of 06, was when a doctor from my work had gone to a conference and heard about PANDAS. He'd come back and said, Robin, I think Bailey has this. So we looked into it. We both looked into it. We did a lot of research on it and he fit it to a “t.”
The sudden onset. The tics. The fear of eating. The waxing and waning of symptoms. The onset before puberty and after a recent strep infection. The elevated titers for strep.
They're all classic signs of PANDAS.
SWEDO: Our kids describe it as a 0 to 60 onset over night They go to bed healthy but in the morning can't get down the steps because they have to repeat thing so many times that they can't get down the steps.
Dr. Sue Swedo is a tenured researcher at the National Institute of Mental Health in Bethesda, Maryland.
SWEDO: The parents talk about their child being possessed. Over night they change. These kids have handwriting deterioration. They have the presences of creaform movements. They have irritability. They have personality change. For some of the kids they develop very abrupt separation anxiety. They won't leave their mother's side. They also have bedwetting and daytime urinary frequency and daytime incontinence. So they are very sick. And it isn't just a little eyebrow tic or you know an occasional throat clearing
In, 1989, Swedo published a study linking a type of streptococci to the rapid onset of OCD and Tics/Tourettes.
SWEDO: That very very very abrupt onset and then the symptom remission which can last for several weeks until they get their next strep infection, is really what distinguishes it from the run of the mill ocd.
It's well known how strep infections can produce antibodies that create an autoimmune reactionâ€” making the body turn on itself.
In rheumatic fever, that reaction inflames the heart muscle, and joints.
Essentially, Dr. Swedo's theory is that PANDAS is the neurological counterpart of rheumatic fever. With PANDAS, antibodies cross-react with cells in the basal ganglia.
The result --- OCD and Tic disorders.
What's really scary about PANDAS, is just how common strep is.
Every parent knows, strep is an occupational hazard for school-aged children. Some 60 percent of kids get it every year.
But only a fraction of them are susceptible to PANDAS.
Swedo believes a genetic link plays a big role in who gets PANDAS.
SWEDO: We think that kids that end up with PANDAS end up with both the vulnerabilities to OCD and tic disorders. And they'll have a parent, uncle, someone in their family who has ocd or tics and they'll also inherit the susceptibility to rheumatic fever. And we find the susceptibility to rheumatic fever in the grand parents were higher than healthy controls and were comparable to the kids who were being seen for rheumatic fever.
Swedo and her colleagues have been studying PANDAS for more than 20 years. Last year, Columbia University scientists published an article in the journal Molecular Psychiatry. They had reproduced the syndrome in mice.
SHULMAN: I and the other doctors who saw these tapes were having a very hard time seeing what the researchers were calling the abnormal behaviors in these animals.
Dr. Stanford Shulman is chief of infectious diseases at the Children's Memorial Hospital and a professor of pediatric infectious diseases at Northwestern.
He is among a number of world-class researchers who question if PANDAS even exists.
SHULMAN: This is a very controversial area of medicine. It has been proposed that some children who have Tourette's or OCD or tics disorder have this condition that is triggered by strep infections. That's been proposed, but really the best research that has been done so far has not really confirmed that there's a link between strep infections, which of course are extremely common in children, and this neuropsychiatric type conditions.
Shulman and others say that elevated titers for strep are so common, that they prove nothing.
SHULMAN: If we take 100 children who've fallen out of a tree and break their arms of that age group that we're talking about, and we then do strep tests on 100 children. We're going to find evidence in their blood or in their throats that a lot of them had recently had a streptococcal infection. That doesn't mean that the strep infection caused them to fall out of the tree. It could just mean it could be there in the background of infections. And um so, again, large studies are ongoing to see if strep infections are a trigger of these behavioral disorders or whether it's a coincidence.
All they want is for their little boy to get better, no matter what it takes.
But they're about to face even more obstacles.