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Teen navigating care for rare condition

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Teen navigating care for rare condition

Jordan Moore

“Soul-destroying,” “very tough,” “complex,” “a game-changer” – all words people have used to describe a condition Jordan Moore began to tackle at the age of 13.

Pediatric autoimmune neuropsychiatric disorder associated with streptococcus – PANDAS – is a rare condition that medical experts are still trying to figure out.

Jordan and his family are still navigating it as well. His family consists of mom Karimah, dad Anthony, older brother Jelani – a freshman at the University of South Carolina – and Jordan. The family resides in Summerville.

PANDAS is controversial within the medical community. Some doctors believe it is over-diagnosed or simply doesn’t exist.

Jordan, now 15, is on a bumpy road with an illness that leaves him with OCD-like symptoms. Those bumps in the road consist of insurance coverage; maintaining Jordan’s symptoms; educating parents, physicians and lawmakers; and fighting a debate on whether the condition is truly a recognizable one in the medical field.

The Moores

PANDAS is characterized as the sudden, rapid-onset of obsessive compulsive disorder – or OCD – behavior, as well as possible movement and behavioral abnormalities, following a strep infection. Symptoms also include severe separation anxiety, trouble eating, tics and/or purposeless motor movements, and difficulty handwriting.

Jordan’s journey with PANDAS began in 2017. In July of that year, Jordan had recently had what was classified as a summer cold, though the family thought it was strep – which Jordan gets often. A throat swab at the pediatrician’s office initially tested negative for strep and Jordan was treated with over-the-counter medicine.

In the weeks that followed Jordan had one return visit to the pediatrician and two emergency room visits following the “summer cold” episode. Karimah took Jordan back to his pediatrician because Jordan could not stop washing his hands and he kept re-tracing his footsteps. His pediatrician suggested that Jordan had OCD. The family scheduled an appointment with a psychiatrist but the appointment was six weeks out.

Jordan’s handwriting had also changed – Karimah described it as looking like that of someone who had had a stroke – and he was even having trouble walking and performing other typical tasks.

Jordan also did not want his mom to be away from him for an extended amount of time – or even short periods of time – all behavior atypical of how Jordan used to be prior to the summer cold.

“Jordan was really independent – he couldn’t care less where I was,” Karimah said.

Jordan started having trouble sleeping, eating, drinking, swallowing and even walking. Jordan finally met with the referred psychiatrist, who asked for more information regarding Jordan’s recent sickness and requested the lab results from the throat swab. However, the swab had not been sent to a lab. When Karimah reported this back to the psychiatrist, she was told of a condition connected to strep – PANDAS.

During a second ER visit, Karimah told the attending doctor at the Medical University of South Carolina that Jordan had not been the same since the possible strep episode in July. She told reiterated what the psychiatrist had told her about PANDAS as a possible cause of Jordan’s symptoms and drastic deterioration.

The attending physician consulted a panel of PANDAS specialists. Tanya Murphy, an internationally recognized PANDAS specialist practicing in Florida, was the most responsive to his case. With Murphy’s consultation, Jordan was treated with a steroid at MUSC and within a day, Karimah said the “old” Jordan started to return; he was laughing at the TV, he wanted to eat again and walk around the hospital.

Karimah said the improvement from the steroid indicated some type of inflammation on the brain. This prompted doctors to start an infusion called IVIG over the course of two days.

Jordan was treated at MUSC Children’s Hospital for five weeks. Three months after being discharged from MUSC, they headed to Florida, where Murphy treated him for almost six weeks. Karimah said Jordan responds best to steroids and IVIG. Steroids wear off, so he needs the infusion, which insurance does not cover unless he is admitted through the ER. Therefore, when Jordan’s symptoms exacerbate, he has to go to the ER for treatment.

The Moores have since learned further obstacles with the disorder, including getting insurance to cover IVIG outside of the hospital, and the struggle to identify PANDAS as an actual disorder.

The condition

The journey has taken a toll on the Moore family.

His dad, Anthony, described both of his sons as social and active – but the condition has taken away Jordan’s zeal.

“It’s a challenge,” he said. “We had to change our whole family dynamics…just change things completely in terms of the household.”

Jordan has selective mutism and performs “rituals” before certain tasks. With Jordan’s flare ups, Anthony said the family has to be careful with how they interact with him. With Anthony in particular, Jordan prefers not to be in the same space because he feels his dad his “contaminated.”

“He knows his dad is not – it is frustrating him, he feels really bad about it, but he can’t help the anxiety he feels when he is close to his dad,” Karimah said.

Anthony said the family is hoping and praying Jordan will get well soon.

“Finally the community is becoming more aware of this particular disease,” he said.

Jordan now receives treatment at the Brain Restoration Clinic in Indian Land. The practice is run by Jean-Ronel Corbier. a pediatric neurologist, and his brother, Paul Corbier, who works in internal medicine.

Paul said PANDAS refers to a condition that is triggered by strep; after strep there is a radical and acute change in the child’s behavior, mood and emotions. The child may have get very anxious or have OCD and movement disorders such as tics.

PANDAS is a subset of PANS, which incorporates other organisms and conditions that could trigger an acute onset of neuropsychiatric conditions.

Paul said it is still a clinical diagnosis, and labs help diagnosis the condition. Paul said to a neurologist, the symptoms might be labeled as part of  Tourette syndrome – and there quite a few neurologists who might not be on board with labeling it as PANDAS, he said.

“If someone doesn’t take the time and just put it in a particular existing bucket of diagnosis, then it could easily be missed,” Paul said, adding he thinks people are slowly becoming more aware of the condition.

The Corbiers said any time there is a new construct or diagnosis is presented, there is always going to be a lot of discussion and back-and-forth on the matter.

“One reason I think there is a lot of controversy is because PANDAS and PANS may overlap with a lot of other conditions,” Paul said, alluding back to Tourette's. “But what we do find is that PANDAS and PANS patients, they do respond to different types of treatment and interventions…which tells us we are dealing with a specific condition and diagnosis.”

Paul said statistics report one in 200 children have the condition, adding that he believes it is underdiagnosed.

Paul said he thinks the hallmark of diagnosing a child with it is the sudden, acute change in behavior and mood – especially with anxiety and OCD.

“If this happens very suddenly for no apparent reason other than an exposure to strep, or other organism, that’s when we start to think of PANDAS/PANS,” he said.

The Corbiers believe the condition is curable; Paul said IVIG is a costly treatment that comes with side effects and needs to be monitored carefully, but if someone has severe symptoms – say to the point of being hospitalized, and antibiotics are no longer effective – IVIG has been “well studied” to treat PANDAS and PANS patients.

The Moore family talked about their struggle of getting insurance to cover IVIG. The Corbiers said for PANDAS/PANS patients it is considered an “off-label” use and because it is so expensive a lot of insurance companies will flat-out deny coverage. Paul said it is not unusual to go through a lengthy process of making appeals, talking to medical directors of insurance companies, researching articles and more to show why it is medically necessary to get it covered.

While describing it as a “very tough condition,” the Corbiers said there is hope.

“It is a journey and as long as people are put on the right path…we’ll see some gains and some improvements in their health,” Jean-Ronel said.

Family support

Karimah is now been in contact with other parents to learn more about the disorder, including Fort Mill resident Kati Durkee, who has been involved with PAE Kids SC, and Mt. Pleasant resident Sophie Fowler, who has also been involved with PAE Kids SC. Both women are parents of children with PANS or PANDAS.

PAE Kids SC advocates on behalf of children who suffer from neuroimmune disorders such as PANS and PANDAS by providing emotional and social support to families, raising community education and awareness and advocating for clinical points of access in South Carolina.

In 2016 the PANDAS Network had a conference in Washington, D.C., which Durkee attended.

Durkee said during that conference, by a show of hands, about two-thirds of the parents in the room were parents of children with autism and PANS or PANDAS.

“So I think sometimes it’s either a misdiagnosis or it’s a very common comorbid condition that goes together,” she said.

Durkee returned from the conference and networked with other parents of children with the disorder, and they started to work to raise awareness. She thus created PAE Kids.

PAE Kids is gearing up to speak with lawmakers this year to advocate for the council.

While it is a controversial diagnosis, Durkee said there are many organizations across the nation advocating for the disorder, and the discussion always comes back to the controversy.

However, Durkee argued the actual controversy is “the fact that there’s thousands of kids not getting proper medical treatment.” She said her hope for other families is for them to be able to take their child to a pediatrician, and for the pediatrician to acknowledge their behavior is not normal and know the treatment protocols.

“It’s soul-destroying knowing that there is something medically wrong with your children and nobody wants to help you with that, they just want to manage their behaviors and show you how to manage their behavior,” she said.

Fowler said her child, who has PANDAS, “had a complete personality change in one day.”

She aims for early diagnosis, proper treatment and access to that treatment in South Carolina – as well as access to IVIG if indicated.

Fowler said the experience has been “a complete game changer” for the family.

She also said she does not think it’s a controversial illness; “it’s only when people just haven’t been educated properly…there’s no controversy.”

Fowler said she would love for others to support PRAI and to educate themselves, and believes the more others know about the condition, the better.

“The quicker the treatment, the better the outcome,” she said.

Political reception

Parents of children with PANS/PANDAS were pulling for lawmakers to pass South Carolina House Bill 3725. The bill was tabled by the Senate last session.

The proposed bill states the advisory council will advise the Department of Health and Environmental Control on research, diagnosis, treatment and education relating to PANS and PANDAS. The advisory council would come up with practice guidelines for the diagnosis and treatment of PANS and PANDAS, and mechanisms to increase clinical awareness and education regarding the syndrome and disorder.

Durkee said parents were upset with the bill being tabled.

“Really all we’re asking for is 12 people to come to a table, four times a year, write a report and say this is what we could be doing to get the message out there – one of those things is just information on the DHEC website,” she said.

Durkee said the legislation does not tell medical practitioners how to treat, but a way to get them the information so they can treat the disorders.

Fowler had a similar reaction to the bill being tabled.

“I’m kind of frustrated,” she said. “It seems we gave tons of information about the disease, about what other states have been passing…so it’s frustrating that our state did not.”

South Carolina Rep. R. Raye Felder, R-York, a sponsor of the bill, said in an e-mail that parents want answers and a place to go for treatment without traveling across the country.

“Parents are exhausted with the constant hardship of trying to find answers and doctors that can treat their child with success,” she said. “As a (s)tate, I think we start with the experts at the table discussing the science and the next steps for a protocol of treatment.”

Felder said the goal behind the advisory board is education of all those involved, allowing the medical community to have an open discussion concerning the science.

“South Carolina has a very valuable resource with the South Carolina Children’s Hospital Collaborative, we have the best of the best here in our State,” she said. “The opportunity to bring the collective specialist together for a conversation could be a game changer for many lives and our most vulnerable children.”

While Felder said a new medical diagnosis will always take time and have the “naysayers,” she said there is a “remarkable” network of children’s hospitals that want to help.

“The legislation will allow them the opportunity to make this discussion a focus and an opportunity to make South Carolina a leader in resources and information on this very complex and often misunderstood medical condition,” she said.

South Carolina Sen. Brad Hutto, R-Orangeburg, moved to table the bill toward the end of the last session.

Hutto said whether it is a recognizable diagnosis or not, it is not a legislative matter.

“It is not up to a group of…legislators to determine that there’s a diagnosis when the medical community itself has not reached that conclusion,” he said.

Hutto referenced items including reading medical literature and speaking with medical experts from MUSC and his wife, who is a pediatrician, for his stance.

At this point, either the chairman on his own volition could put the bill back on a future agenda or a member of the medical affairs committee could move to put it back on the agenda, but if there is an effort to do that – “I’m unaware of that,” Hutto said.

In terms of parents’ efforts to provide resources to other medical experts in regards to PANDAS/PANS, as well as spread awareness about it, Hutto said it is a process that does not involve legislature; he said it would involve working with doctors that do recognize the condition to help others recognize it.

“I appreciate the fact that they want to be proactive – and they have every right to be – but the way that you do it, traditionally, and to make it something that the medical community believes in, is you got to convince them that it exists,” he said. “I don’t think if we pass a…committee, that that changes my wife’s opinion or any other pediatrician’s opinion.”

Hutto said he understands what the children are going through is real and their symptoms need to be seen and treated by doctors.

“I’m dealing with this on the medical marijuana issue – sometimes the best treatment isn’t available in our state and you have to go out of state because that’s where the best treatment is,” he said. “All states don’t move at the same speed with the recognition of the best forms of treatment, but it all does start with the medical community recognizing the type of treatment that’s necessary.”

The Corbiers have also testified in support for Bill 3725.

“We try to do our part, and…whether it’s with an insurance company, legislator, we explain, we put a personal face to what’s going on, we feel that there’s a little bit more awareness in moving the needle closer to one day getting coverage and recognition, because this is a very important condition that alters the quality of life of many patients and their families – including that of Jordan,” Paul said.

Jordan’s take

Karimah keeps a book and photos of Jordan’s journey with PANDAS in the hospital.

“I just didn’t believe it was happening at the time…and I was in shock myself about what was going on,” she said.

Karimah said she does this to document Jordan’s progress.

“There’s a lot of things where he has gotten better, and I think the pictures probably give me perspective around that, but just the fact that he’s this sick is pretty devastating,” she said. “He wants to get well…he really wants to get better.”

Jelani said his mom will often ask him if he thinks Jordan is getting better; Jelani said he thinks Jordan has stayed the same, but the family is learning to better cope with it.

“That’s fair to say too,” Karimah said.

While he would not speak to The Summerville Journal Scene directly, Jordan wrote a post on his journey with PANDAS through a GoFundMe page.

“The symptoms can start very suddenly and they change a child’s life,” he wrote. “I began having aches and pains, movement and vocal tics, really awful headaches, dizziness and nose bleeds.”

Jordan wrote about struggling to write straight, feeling scared and anxious and not wanting to sleep alone, as well as thinking that people, places and objects had germs.

“I was always independent, outgoing, adventurous and I did good in school,” he wrote. “I knew I was changing and things kept getting worse.”

Jordan wrote before PANDAS he was very active and enjoyed sports, the outdoors, swimming at the YMCA, being with his family and hanging out with friends. He enjoyed guitar lessons, cutting grass in his neighborhood, riding his BMX and UTV and building go-karts.

“PANDAS changed my world overnight,” he wrote. “Now I spend my days mostly managing compulsive symptoms, tics, getting through my homebound sessions with my teachers, going to doctor appointments, taking medicine, and getting painful shots.”

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