A Childhood Mystery: PANDAS and PANS Disorder

– Did you take your Ibuprofen
at school before you left? – I, no. – No? – Oh ya. – You did? You should have at one o’clock. When Owen was very young, he would get strep throat a lot. 12 times in 14 months, and every time he got strep
he didn’t run a fever. He never complained of a sore throat, but his behaviors would get strange. – Sometimes it makes me normal and then sometimes I’m really just not me. – My name is Maria Wilson, and my husband, Phil and I have a son. He’s nine and a half, Owen, and Owen was diagnosed
with PANDAS last September. He had ticks that were
recurring, I don’t know, 30 or 40 times a minute. He couldn’t focus. He lost most of his executive
functioning abilities. He was struggling. – [Elizabeth] I’m an integrative physician specializing in PANS PANDAS. The letters stand for pediatric autoimmune neuropsychiatric disorder
associated with streptococcus. And it is a disorder
where a strep infection triggers inflammation in the brain causing neurologic and
psychiatric symptoms. PANS is a condition, pediatric acute onset neuropsychiatric syndrome. It’s very similar to PANDAS but in that case other kinds of infections such as influenza or Lyme
can be the trigger for it. Generally the onset for
PANDAS and PANS is very acute. So the phrase we’ll hear over
and over again from parents is my child went to bed themselves and woke up a different person. It was like someone else
was in my child’s body. – [Maria] Owen is very bright. He is very energetic. Creative. He loves music. He likes Legos. He loves to build and create
anything out of anything. – [Elizabeth] In a mild case, the child might have a few ticks. (incomprehensible muttering) Some mild anxiety. Trouble focusing. (distraught crying) at most severe into the spectrum, you’re going to see kids who
are jumping out of moving cars, and out of windows at their houses. Attacking their parents. OCD to the point that they
can’t even get out of bed. It’s very common for the
PANS PANDAS to first be misdiagnosed as things like
OCD, ADD, opposition defiant and for the parents to
really end up going to a long list of doctors before
it gets correctly diagnosed. Children are put on multiple psychiatric medications and never respond. And it can unfortunately
take years before they find out what’s really going on. – I add that color and make that one. – [Maria] That’s normal Owen. And when we see the other Owen, we see frustration and anger. We see stubbornness and he
becomes oppositionally defiant, or forgetful. We are unable to focus. We’re disruptive at school. We don’t sleep. We scream. We’re bored, all the time. And sometimes we can be a little bit mean. Do you want it cut? – No. I can kind of feel it coming, not really, because like maybe I’m like really tired, maybe I forgot to take medicine maybe, I don’t know, but. – At this point, we don’t
know why one child get it, and another doesn’t. It is extremely common
to see multiple children within one family with it. We know that there must
be a genetic component. – You got your panda socks on. (laughs) Augie! Augie, hi! Oh! (laughs) I was pursuing my PHD in history at Pitt when I had my first child
and he was born sick. He had a rare genetic disorder and so I decided to become a doctor because I was frustrated
with the way his doctors were treating me as a mom. While I was in medical school, my first child came down with
PANS at the age of three. It was misdiagnosed. And then my second child came down with it a year and a half later. They didn’t get properly diagnosed until after I had
graduated from residency, and I actually found out about
PANS PANDAS from other moms. Not from the medical world. (sobbing) Once the initial onset of
the disorder is treated, whether we’re able to do
that with just antibiotics, or if we have to go to IVIG. It’s basically an infusion of the immune fighting cells of blood donors. A child who wasn’t able to go to school, who wasn’t leaving the house,
who wasn’t functioning, generally get back to being themselves and they’re back out
there living their lives. – [Man] You can just go wherever you want. – [Elizabeth] When the
condition is untreated it can cause permanent problems. PANS PANDAS is still
considered a relatively new diagnosis within
the medical community. – Are you feeling okay? Yeah. You look very pretty. – [Maria] My husband
was commuting downtown and on T he was reading
the Wall Street Journal and there was an article about PANDAS, and he called me up and
he said, this is Owen. I mentioned it to the pediatrician
and I was disregarded. – [Elizabeth] Teachers
and school psychologists and primary care doctors aren’t very familiar with the condition, and so for that reason there can be a lot of skepticism on their part, even accepting that the child has it. A lot of times, they want to blame the symptoms on the child’s behavior, because they’re not
understanding and accepting that actually their brain is inflamed and they do not have
control over the symptoms. So even kids that have been treated and are back to baseline, most of them will still when they get sick have what we call flares where
the symptoms will return. – [Maria] Do I need to
consider home schooling him? How do I do that and work too? Do you let him go to a birthday party? There might be sick children. I’m trying not to keep him
in too much of a bubble, but still to protect him
from unnecessary exposure or stress that may trigger
him to go into a flare. Keep questioning the doctors
and if you think something isn’t right you have
to trust your instinct. So you have to just keep pushing and that’s how we got to Dr. Spaar. And within two weeks we saw improvement. Within 30 days I emailed
one of his teachers to say I think I have my kid back. (soft music)

4 thoughts on “A Childhood Mystery: PANDAS and PANS Disorder

  1. Thank you for posting this and showcasing this disease! Our son was highlighted in the 20/20 program and Nightline program on the same disease last July. This disease and these kids need SO much attention and support from doctors, INSURANCE COMPANIES and the medical community at large!

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