Family Struggles for Treatment for PANDAS Diagnosis
For WBEZ, Julianne Hill brings us the second part of his story. We pick things up when Bailey's just 10 years old.
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It's November of 2007. For months now, Robin Evert tried to find a way to treat her son's severe anxiety, tics and obsessive-compulsive disorder. And then, online, she found a knowledgeable doctor.
EVERT: I'm reading this, and it's all about PANDAS. At the time I didn't know where he was. I didn't care. I didn't care if we had to go Austria. I didn't care if we had to go to the North Pole. And so, I'm reading down and trying to find contact information. And he um was in Hinsdale, Illinois. Which was amazing.
DR. MIROSLAV KOVACEVIC: It appears that we almost threw the baby with the bath water because we could not agree on exact mechanisms of PANDAS.
Dr. Miroslav Kovacevic, or Dr K. as patients call him, is an assistant professor of pediatrics at Loyola University's Strict School of Medicine.
He's affiliated with Hinsdale Hospital. And he's one of only a handful of doctors in the country who treats PANDAS.
KOVACEVIC: I'm afraid that uh, the medical community has concentrated on mechanisms rather than the clinical diagnosis and possible treatment.
He uses a steroid burst as a first step to confirm the diagnosis.
KOVACEVIC: If child responds positively to the steroid burst, that is a confirmation of an auto-immune response and it aids in diagnosis of pandas.
What would a positive response be to a steroid burst?
KOVACEVIC: It is a significant and objective improvement of symptoms within a period of about 2 to 3 weeks. The improvement is usually so strong that cannot be missed.
EVERT: And so, we started the steroid burst and his symptoms decreased. We started it on a Saturday and on Monday he went to school. He had no anxiety at school that day. His appetite had increased.
At this point, Bailey was 10 and a half years old. That's significant. Response to PANDAS treatment only seems to work before the onset of puberty.
KOVACEVIC: Once the child crosses 10 years of age, the response to the treatment might be slowed down, or might be only partial.
What are the theories on why that is?
KOVACEVIC: Honestly, I don't know. One of the possibilities is that while during the PANDAS episodes until 10 years of age, the damage that might be inflicted on the central nervous system might be transient and actually recoverable, so it's not permanent. After 10 years of age, permanent damage might be taking place.
There are two choices in treated PANDAS. One is Plasmapheresis. It's also known as “plasma exchange.” The other is intravenous immunoglobulin, or IVIG. But even the two choices cause controversy.
KOVACEVIC: Plasmapheresis is a filtering of the blood, and removal of autoimmune antibodies, and intravenous immunoglobulin is infusion of a blood fraction product.
How does this affect the child's body?
KOVACEVIC: Plasmapheresis removes the autoimmune antibodies, thus decreasing autoimmune antibodies that are causing the damage. Intravenous immunoglobulin appears to compete with those autoimmune antibodies and increases their elimination from the body.
The treatments carry risks, like occult infections or mechanical malfunctions during plasma exchange. Knowing the risks, the Everts chose IVIG.
EVERT: He did very well with it. His symptoms started dissipating. At the time he had snorting tics, and that started dissipating.
Dr. Kovacevic says Bailey's response is typical.
KOVACEVIC: You might experience the same sudden conversion where the fully-blown symptoms can occur within a few hours. That does happen in about 35-40 percent of patients. Most of the other patients take a slower path to recovery. If the treatment is successful the definition is child is back to normal. That does happen in as many as 80 percent of cases.
As a prophylactic, Dr. Kovacevic prescribes daily dose of an antibiotic. Even that generates debate. Dr. Stanford Shulman is chief of infectious diseases at the Children's Memorial Hospital.
SHULMAN: There are some circumstances in which we utilize continuous antibiotic therapy, for example in patients who have a clear history of rheumatic fever. That's a situation where the link between strep and rheumatic fever is ironclad and proven, and therefore we're justified to administer an antibiotic to prevent strep for decades and decades on a daily basis or injections on a monthly basis. But not where we have an unproven circumstance does that make sense.
One round of IVIG greatly helped Bailey. But it wasn't enough.
EVERT: He was about 75 percent better, and then Dr. K felt that he because he had went so long undiagnosed – not diagnosed correctly, treated correctly – that he did need another IVIG.
The Everts moved forward with the second dose. But their health insurance company was reluctant to pay. The family pays out of pocket.
EVERT: The medication is extremely expensive. You know, he's got an entire staff with him to monitor him all day. Dr. K is there the entire day with him. It's around $20,000, and the insurance paid most of that. The first one they paid. The second one they didn't. I think the breaking point was when we found out that summer that the insurance was not going to pay for it and you know we knew we had to sell the house and just um, cut down our expenses and be able to do this for him.
The success of Bailey's treatment doesn't convince researchers like Dr. Shulman.
SHULMAN: If there's a true relationship between infection and a disease – and if there's a true benefit from a particular kind of treatment – then careful scientific studies should have no problem demonstrating in groups of patients that that really that relationship really exists.
Dr. Shulman believes current evidence doesn't support PANDAS' existence, but he does not rule out that some association between strep and the symptoms might be found in the future.
SHULMAN: My reading of the research so far, the literature so far, is that the preponderance of the evidence so far does not support a connection between strep and these neurobehavioral abnormalities. But I don't think the final answer is in, I think there's more research to be done.
Unlike Dr. Shulman, the Everts believe PANDAS is real. Bailey says things are getting better.
BAILEY: It's not as much as it was a long time ago.
HILL: You don't worry as much?
EVERT: So, no anxiety at school today?
EVERT: What did you do in art?
BAILEY: I was drawing my bumble bee that I was working on. And I finished it. Almost finished it.
EVERT: He's come a long way, and he's been through a lot for one child. And uh, he's just… he's incredible and we tell him that all the time.
For now, the Everts are living without any of the symptoms that so quickly changed Bailey's life. But Dr. K. warns, they'll always have to be vigilant.
Julianne Hill is a former recipient of the Rosalynn Carter Fellowship, awarded to journalists who cover mental health issues.