Parents of kids diagnosed with PANDAS face skepticism from some doctors: Part 2

Part of the difficulty of getting insurance coverage for treatment for PANDAS is because of the controversy surrounding the diagnosis.
7:31 | 07/21/18

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Transcript for Parents of kids diagnosed with PANDAS face skepticism from some doctors: Part 2
his special eon of "N" ntinues. Parker, are you , he's not with us, H. He's not here. 12-year-oldarkerrn and year-old alexia Baier, haeen suffering debilitating episodes like these for months. Get away! Gety! Reporter: Parke missed ne a full grade of school and at one point stopped talking foouronths. I would liken itostly ton ction. ING came ihew and stole our chil but it'ot our kid. Our kid isone. Like, gone. After so muuncertainty, both families now H the same diagnosis, that disorder Ed as. Sors believe pandas works liketh anybody gets sick, the immu sm makesodies ight off the drugs, but those travel to the brain causing it to swell. They say that swelling can trge wide variety of neurological issues like T, rages, depression, or obses mpulsive behavior. Ditional onset OCD is dual. Comes over a period of days or S. Paas OCD comes on overnight. It's lightning-like onset where thhild is struck down Reporter: Docto say pandas is tggered by strep. Pans is triggered by other common childhood illnesses like pneumonia, staph infections, even the F you think that's our flight Reporter: On this day, parker and his mom are traveling more th 100 miles to wasngton, D.C. To seen of theew pandas special the country. The wait listf date parentsoee Dr. Elizabeth mer can be months ago. R. Latimer, this isparker. Cou say hi, parker? December is when he said H start having these mopies. Did you ask him what that meant? Just sudden sad. Reporter:n those heartbreaking videos of parker, Dr. Latimer recognizings the ll-talens of pandas. Oh, he's got ticks, eye rolling. Do you have worries? You have bad ts? Yeah I may have some bad thoughts occasionally. Parker describes it as I his mind had been hijacke Yes. That's the most notable aspect of pandasd to some with true psychosis. These ks will come in and say, E's somethg Ong with M brn, can you fix it? Ake Y shoes and socks off, se. Rr: Although pandas presents lik traditional ill the beeve the K is not just to treahe mptoms, focus on the overac immune system. Before Seng latimer, parker had gone through a seriesof treatments including antibioticteroids and infusions of althy antibodies. But theyyaw some improvement. It's very pricey. Very pricey Reporter: Any new trents fromatmore would be more intensive and exns but E treatments for pandas are rarely cover insuran. I was like, doe sell the house? Ight. Do we jt live in an apartment? Let's just sell it all. It doesn't matter. It's just stuff. Reporter: But thenalie UND another family had gotten one treatme covered, soer employer changed itsic help per. Part of theifficulty getting verage is thanks to the controverrounding T diagnosis. Y're skeptical that pandas exists? Yes. Deeplyical? Yes. Donald billert is a newer rolgst cincii children's hospital. Hi the majority of people who believe have pandas just have oc or ticks. Repter: He worked on early research study about pantas, but said there needs to more Ta to P that P can cause these issues. Y say you have patients referred to you who thinkhey mighave pandas. All the time. H oftenoou think those are real? So you're sg it's overdiagnosed? Ovsed, yes. The problem is, ifou me a claim that the immune systems the culprit, it's going tarm th you're going to hammer their ie system with a $10,000 treatment that they have no busineetting. Rorter: Dr. Swedeond latimer do P out many children develop psychiatric symptoms without ion. And more kids get strep and never have behavioralblems. Andas is complicated. It's complid,difficult, it's dirt Y're in the mud people yelling at Yo criticizing you. You gottaeble toe slgs and ars. Turn your hands up to the sky. Reporter: They say the impact of the controv on pandas researeducatnd treatmt is huge. The America pediatrics remains unconvince sa there is insufficient proof that strepauses these symptoms. Its only treatment MM sdatients T a split. Although treat guideline were published in a different medical journal in 2015. That's adorab EP alexia's M said them and kids arefering. After we find something that makes sen and stillng to be met with skepticism a crism and be told, no'm wrong, yet again, the a lot anger and hurtind . Reporter: Vanessa says, like many children treated for pandas,lexia start responding to antibiotics and other drugs. She also does behavioral therapy. L has flares OCD behavior when she's sick, shs gettingbetter. It's not a straight line cover? That's the hard thing with pandas it not one size fits all. Do youant to just go are? You done? Reporter: A year and a half into hisness, parker is still strug bit downeally hard. Reporter: The trip Dr. Latimer leftatalie. Really want EP theily is still waiting to see if theyan T that more advanced treatme she suggested. E're just one couple that represents thousand. Prably tens O thoands. Group's Stor Repter: Natie and Brian say they had been dismissed by too many oradced to find help tgh a online community of parents just like them. What arer hopes for rk long-term? We E fight this through and find whatever it is, wherever it is, fromver comefrom, that gives H full ry he deserves. How can you look cld that is in this stated Y, I'm sorry, I can't help? Get T your ne pad. You call au get on the internet. You G something up. You figure it out. Because asking P to do it is not right. You're a Dr. That's aick child. Both those things are abundantly clear. Click in and doit. Caimagine hoyou sleep night being a doctor and turning a child awayt'k like parker is.or worse. You're fighting to get THA boy back? E'ighting to give him thetube the man weknn be. We'll be right back. T special edition of

This transcript has been automatically generated and may not be 100% accurate.

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