Mother desperate after insurance denies son’s treatment for coverage with serious brain disease

LEE’S SUMMIT, Mo. (KCTV) - It’s one of the more common illnesses: strep throat. According to the Centers for Disease Control, strep throat is now at a 20-year high.

It is a bacterial infection in your throat and tonsils, a common ailment in kids. Most children recover, but strep can lead to a serious brain disease in kids.

It’s exactly what led to a two-year-long fight for one Lees Summit mother. It has been a fight to get the right care, and then another for Annie Steil to get the coverage for her son.

“It was about two years ago after he had several bouts with strep throat,” said Annie. “He started having OCD, refused to sleep at night, he had like very big almost like what you’d call temper tantrums.”

Doctors originally diagnosed her son, 9-year-old Colton, with ADHD, but that didn’t sit right with Annie.

“He definitely regressed in school, and I knew something was wrong with him,” said Annie.

She was right. One year later, Colton was diagnosed with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, or PANDAS.

“One night or two nights, the child is totally different,” said Dr. Alex Nelson. “That’s the tell-tale sign of PANDAS.”

Nelson is Colton’s neurologist.n kids with PANDAS, the body begins attacking the brain.

“What’s going on is the immune system has at that point started to make auto or self-antibodies towards their own brain tissue,” explained Nelson. “This is what’s leading to any sort of psychiatric or psychotic-based behavior.”

According to the PANDAS Network, a parent-created national support group estimates upwards to 1 in 200 kids are affected by the disorder. Nelson said the most effective treatment for PANDAS is called IVIG.

“IVIG is intravenous immunoglobulins or immune cells that go in and will fight the STREP,” said Nelson. “It will help the immune system go after this situation of the immune system attacking the brain.”

But it’s pricey. Nelson said a few rounds of IVIG can range from $5,000-$20,000. Nelson said in some cases, the disease can relapse and often IVIG is not covered by insurance.

“We’ve had parents dip into their retirement funds, going into other funds. They will spend 6 figures on their child easily just in IVIG,” said Nelson.

KCTV5 found that in eight states, it is mandated that insurance companies cover treatment for PANDAS. However, Missouri and Kansas are not among those states. Nelson said the best way for change is to contact your lawmaker.

Annie has been denied twice by her insurance company.

“They said it’s investigational, that’s the reason for the letter they sent,” said Annie.

She was able to secure six rounds of IVIG for Colton through a free drug trial in Colorado.

“So, he got better, we flew back Christmas Day and he was pretty much back to normal,” said Annie.

Or so she thought.

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“I would say it came back with a vengeance,” said Annie, holding back tears. A few months later, Colton’s PANDAS is back. He could barely keep still as he told KCTV5 about his medication.

“They taste so bad that I have to drink water and swallow them,” said Colton as he moved his arms in the wave-like pattern.

Annie said she sees it getting worse daily.

“It’s really hard as a parent when you see your kid like this, because this is a neural effect,” said Annie. “I worry too because there’s proof that if you don’t get a treatment in time, it can cause permanent brain damage.”

Annie said all it would take is a few rounds of IVIG.

“I’ve been crying probably almost every day, because I don’t know what to do,” said Annie.

Annie’s coworkers put together a fundraising page, and if you’d like to help, visit the GoFundMe here. Annie is also working on a golf fundraiser.

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