PEMBROKE — Oct. 19, 2014, is a day Melissa Locklear Foust will never forget. It’s the day her “social butterfly” of a daughter, 5-year-old Jazlyn, practically became a different child.
“Lord, I remember it like it was yesterday. We get to [Pembroke Elementary School] and she just totally goes into an anxiety attack like I have never seen. She’s screaming, she’s kicking, she’s fighting and I was in total disbelief,” Foust said.
Jazlyn had been having migraines, which no one else in the family gets, and Foust thought the episode may have been caused by medications prescribed to treat the debilitating headaches. But it happened again the next day.
A local psychologist labelled it anxiety, but Foust felt there had to be more to this sudden change.
“I knew something was wrong but I didn’t know what was wrong,” Foust said.
That’s when a doctor told her about PANDAS.
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections is characterized by a sudden onset of symptoms associated with Obsessive Compulsive Disorder, Tourette’s Syndrome and other tics after a child has had strep throat.
The disorder is somewhat controversial — studies haven’t shown the causal relationship between the infection and OCD-like symptoms that may arise later. Not much is known about PANDAS’ long-term effects, why the disorder arises, or even how many children have it.
“… The problem is that strep is so common, how do you know it’s not just a kid with OCD, or that something neurologically has changed?” said Dr. Fasil Mohomed, pediatric hospitalist with Southeastern Regional Medical Center and Lumberton Children’s Clinic.
Some researchers believe that a misguided immune response to the infection interferes with the part of the brain associated with learning, voluntary movements and in general choosing what behaviors to employ.
It can be tricky to demonstrate that a child has PANDAS. It’s newly described and there’s no simple test to prove a child has it. The diagnosis process is further complicated by the fact that the disorder typically develops in children ages 4 to 9, when they may be forming new behaviors and are becoming increasingly able to express their ailments.
But parents of children with PANDAS and closely related disorders say the changes they’ve seen in their children’s personalities and mannerisms are all too real. The tics, mood swings and loss of appetite may gradually improve, but parents like Foust say they reappear in full force when the child is again exposed to an infection, like strep.
Before she got sick, Jazlyn was an active child — she danced, she played soccer, she loved to wear girly clothes.
Now, when her symptoms are bad, she has little appetite and as a result has lost weight. At least once she became afraid that if she ate she would choke. She has fits of rage over the mention of going to school, washes her hands repeatedly and blinks so often she has tried to hold her eyes open with her index finger and thumb. Foust said “in our PANDAS world” this is called a flare-up — and other parents of children with the disorder say they experience the same thing.
“She may be in a complete flare up for a whole hour … but she doesn’t remember what she does,” Foust said.
Doctors at Duke recently adjusted Jazlyn’s diagnosis to PITANDS, or pediatric infection-triggered autoimmune neuropsychiatric disorders, which is closely related to PANDAS but can result from any infection. Blood tests have shown Jazlyn has had strep.
Children with the disorders are sometimes put on antibiotics to help them fend off infections, and may benefit from the same therapy children with anxiety disorders would get. Jazlyn has been on and off of antibiotics recently, and Foust says she’ll stay on them, at least until an appointment with Duke University doctors later this month. There, she’s hoping doctors will flag Jazlyn as a candidate for IVIG, a blood product that is administered intravenously and has been shown to help many autoimmune illnesses.
“We’re about ready to try anything that will work so we can get our life back and she can be a regular 5-year-old,” Foust said.
Coming in contact with just about anyone sick has worsened Jazlyn’s symptoms, Foust said — even a stomach virus has sent her down the PANDAS/PITANDS roller coaster. Because of the risk of exposure and Jazlyn’s new habits, she can’t attend school and won’t at least for the rest of what would have been her kindergarten year.
Foust says she has been told her child is the only one in the Public Schools of Robeson County with the disorder, although her cousin’s 3-year-old daughter has begun developing symptoms. On one hand, she believes that could be correct — although grade students can get strep throat infections as many as three times a year, PANDAS is rare.
On the other hand, she wonders how many parents and doctors have not connected the dots when a child gets an infection and sometimes months later develops seemingly unrelated tics. Depending on who you ask, PANDAS and PITANDS are either under-diagnosed because of a lack of awareness about the disorders, or over-diagnosed as distraught parents search for an explanation of what has happened to their child.
Mohomed recommends that parents who believe their child may have PANDAS or PITANDS consult a doctor, and consider visiting a therapist or behavioral specialist.
For her child and for others who may unknowingly have PANDAS or PITANDS, Foust wants to spread awareness of the disorders in Robeson County. She has helped start a PANDAS awareness and support group, which will hold its first meeting April 18 at 10 a.m. at the Robeson County Health Department. Foust encourages parents to have blood tests done when they think their child may have strep as throat cultures sometimes come back negative despite an infection.
“If you know something is different about your child, don’t stop. People are going to tell you “oh, it’s just them being a kid, it’s not strep … This is totally real. My daughter is living proof.”
Sarah Willets can be reached at 910-816-1974 or on Twitter @Sarah_Willets.