The changes to Colin LaVern came overnight.
Colin, of Mount Airy, was 7 or 8 years old when he started presenting symptoms of obsessive-compulsive disorder and began to have tics, said his mother Jody LaVern. When he crossed through a doorway, he would double tap his foot, his hand on the wall or his hat. His tics came in the form of eye blinking. If someone bumped into him, he would bump them back.
“He had a thing about symmetry,” LaVern said. “So everything he was doing was in twos.”
Even his food had to be in even numbers. When he would eat, he would take two quick bites, LaVern said.
Colin would also have rages, followed by headaches. He would be angry and scream, LaVern said, so his parents took him to a pediatrician. He tested positive for strep and was put on antibiotics.
Food became an issue for Colin. The active child began to dramatically lose weight. When he was 11, he lost 11 pounds in two weeks. At one point, he weighed 52 pounds with a body mass index of -4, his mother said.
The weight loss was so dramatic and intense that his parents and pediatricians worried that it was taxing his heart.
Overnight changes, rages, obsessive-compulsive disorder and tics are key symptoms of Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS), a rare disease slowly gaining more attention as more children are diagnosed with it. The disease often mirrors symptoms of autism spectrum disorder, but children with PANDAS tend to be on normal development schedules before suddenly regressing, often following a bout of strep.
Although the disease is becoming more popular in the medical literature, and more cases are diagnosed — in Frederick County alone, there are at least three cases — parents often seek medical help for years before their child receives a PANDAS diagnosis.
PANDAS can be treated by antibiotics in some cases. Other more severe cases require intravenous immunoglobulin, an expensive procedure that can cost more than $10,000 for each procedure. IVIG is considered experimental for PANDAS and is not covered by insurance.
All three Frederick families with children diagnosed with PANDAS have paid for the expensive procedure, some more than once.
Del. Charles Sydnor (D-Baltimore County) entered a bill during the legislative sessions that would have required Medicare to pay for IVIG as a PANDAS treatment. The hope for people like LaVern or Carol Gable, a New Market mother who testified in support of the bill, is that once Medicare covered the procedure, private insurance companies would also.
Sydnor withdrew the bill during the session. LaVern said it was because state officials wanted to study it further and it would be introduced again next session. No one picked up the phone at Sydnor’s office in Annapolis on Monday or last week.
It is unclear if the bill would have likely passed. But for the families with PANDAS children, the withdrawal means at least another year of facing thousands of dollars for a procedure.
When Colin first started demonstrating symptoms, they were all treated separately, LaVern said. The LaVerns took him to an eye doctor for the eye blinking. They treated his recurring strep and his tonsilitis with antibiotics. They took him to therapy for OCD and anxiety.
With the strep throat, it was a constant cycle for three or four months. He’d get sick, his symptoms would flare up, he would get antibiotics, his symptoms would decrease. Three or four weeks later when the antibiotics were down, the symptoms came back, he would test positive for strep and get more antibiotics, LaVern said.
“So we were treating all these symptoms separately,” LaVern said. “Not at the same, but then years later when you put them all together, it was like the aha moment.”
LaVern is a special education teacher, but she said she only knew about the rapid onset of PANDAS. She did not know the disease could ebb and flow like it did with her son.
Colin was diagnosed with PANDAS when he was 11 years old, after several trips to doctors and years of treating symptoms. He was losing weight before the diagnosis, but it continued while he started treatment.
“We lived with PANDAS for five years before we got a diagnosis,” LaVern said. “It was horrible.”
He never had any autistic-like behaviors seen with some children with PANDAS. He developed normally. He was athletic and social. He played football and liked to run.
But his schoolwork began to suffer. PANDAS causes changes in handwriting, something Colin experienced, LaVern said. He would start sentences indented four inches in and always ended in three words. In fifth grade, he lost almost all of his math skills.
He has gained many of them back, LaVern said, but because math skills build on each other, Colin has difficulties because he has gaps from the loss of his math skills and time he took off of school due to his rapid weight loss.
Colin was hospitalized due to his weight loss, LaVern said. His PANDAS made him have difficulty eating. Food was contaminated. Eating around others was nearly impossible. It was not that he did not want to eat, he just could not.
Now 14, Colin is still on the smaller side. He is an active athlete, playing lacrosse and running. He will enter ninth grade at Linganore High School next year. He likes to cook now, but still is cautious when eating around others.
While he is better about wearing a variety of clothing, he often requests people take off their shoes when they come over. If they do not, he will likely start mopping the floor when they leave.
He has been diagnosed with and treated for PANDAS for about two years. He still flares up, especially if he catches the latest bug or another illness. The second half of the school year brought more coughing and sneezing students, which increases Colin’s chance of flaring up from PANDAS. When he flares, he finds it more difficult to concentrate.
When his PANDAS flare, Colin does not sleep well. His mood is not great.
“Stressful,” is how he described it. Also, “annoying.”
PANDAS means “constant worrying,” he said.
Colin has a dog named Stella that he received as part of his PANDAS treatment. He wanted a dog, LaVern said, so when he had to get a procedure done, he got the dog. Stella is a tiny, excitable dog and acts as a support for Colin. He picked her out when she was 8 weeks old.
“She was this big,” Colin said, cupping his hands close together. “A little hamster.”
The necessary expense
Like many children with PANDAS, Colin did receive IVIG procedures on top of the antibiotics his doctor prescribed for him. The antibiotics did help, LaVern said. Colin’s handwriting started to improve. His anxiety lessened.
“After we got the antibiotics and we did steroids, my kid came back again,” LaVern said.
But his case was severe enough that he needed the IVIG procedure. Even though antibiotics helped, Colin still fought symptoms.
Colin’s IVIG procedure cost $10,400, a hefty cost on top of the payments that the family already made for him to see doctors and therapists. Insurance did not cover it. LaVern said a family friend helped them pay for it.
Colin would not wear tennis shoes for several months because of PANDAS. Three weeks after receiving the IVIG, he wanted to wear tennis shoes again.
He received another procedure six months later. He got sick, which led to another flare up, and his doctor recommended another round of IVIG. That meant more fights with insurance companies to try to get a procedure considered experimental to be covered by insurance.
Colin is also on antibiotics to help with PANDAS, LaVern said. Being on constant antibiotics does give LaVern some concern, but it is “a necessary evil,” she said.
The IVIG procedure costs and antibiotic costs just add to the medical costs the LaVerns pay. Family therapy sessions can cost $50 a week, a psychiatrist visit is $25 per visit. Colin’s doctor, Dr. Elizabeth Latimer, does not take insurance.
An intake visit with her costs $1,200, LaVern said.
Then there are cognitive behavior therapy sessions, which come in around $440 a week.
All the costs add up, leaving the LaVerns to make tight financial decisions to be able to afford the medical costs. It means family vacations are drives to visit family. LaVern said she would like to visit her father more, but it is not always possible.
The oldest LaVern son will attend college soon. LaVern said she and her husband were not able to save up for his tuition the way they wanted.
But now the LaVerns are looking at the possibility of paying for a third IVIG procedure. Colin’s blood levels show that he would likely benefit from another round.
That could mean finding a way to pay for another $10,000 procedure. One type of insurance may cover it. Or it might not. And with Sydnor’s bill withdrawn, there’s little LaVern can do to make the insurance company help pay for the procedure.
But if Colin needs another IVIG procedure, LaVern said the family will find a way.
There is little choice when it comes to her son’s health.