Health care refugees: Medical marijuana and new hope

11/29/2016 / By medicalmarijuanaupdate

Rich and Kim Muszynski know when their 5-year-old daughter, Abby, is about to have a grand mal seizure because her pupils enlarge, and she’ll seem to fixate at something in the distance that only she can see.

Article by Elizabeth Cohen

Then it starts. Abby’s extremities shake. She gasps for air.

By the time she turned 3, Abby had tried about eight different anti-seizure medications. None of them worked very well. Panicked to see their daughter getting worse and worse, the Muszynskis drove three hours to Orlando to see Dr. Ngoc Minh Le, a board certified pediatric neurologist and epileptologist.

Le told them that chances of another anti-seizure drug working on Abby were tiny. He recommended medical marijuana. The timing was right: Just months before, Gov. Rick Scott had legalized the use of a type of non-euphoric cannabis called Charlotte’s Web.

The formulation had been a miracle for a little girl with epilepsy named Charlotte Figi. The Muszynskis had seen her story on Dr. Sanjay Gupta’s CNN documentary “Weed.”

Charlotte’s Web did help Abby, but not as much as it had helped Charlotte. She still was having about two grand mal seizures a week, each lasting about eight to 10 minutes.

Le explained to Kim and Rich that Charlotte’s Web has only tiny amounts of THC, one of the psychoactive ingredients in marijuana. Medical marijuana with higher levels of THC was Abby’s best hope, he told them.

But at this point, in 2015, high-THC marijuana wasn’t legal in Florida for Abby. To get it, the Muszynskis would have to move, leaving behind their friends and family, including two older children.

Kim thought about Colorado, where Charlotte Figi lived. She’d checked with parents of disabled children there, and they told her the state had a fair and efficient Medicaid program.

Getting to Colorado would be a challenge: Abby’s doctors said it wasn’t safe for her to fly on a commercial plane or to take a long car ride across the country.

The Muszynskis began their final fight with Florida Medicaid — one that would leave Kim and Abby homeless for several days.

Kim says that in mid-August, she started talking to Medicaid officials about getting an air ambulance to Colorado. On September 19, Rich drove the family car out to Colorado. They planned for Kim to attend the closing on their house in Boynton Beach on September 23 and leave on the air ambulance with Abby that afternoon.

Kim had emailed and spoken with various Florida officials, and it seemed to her that everything was in order. “Please give a call today so we can finalize travel arrangements!” Mary Joyce, a senior registered nurse supervisor at Children’s Medical Services at the Florida Department of Health, wrote in an email to Kim on September 20.

But then several days passed, and there was still no final approval for the transport.

Their house sold, Kim and Abby were homeless. They moved in with Kim’s best friend and her husband. All of Abby’s equipment, like her bed with guardrails, was with Rich on their way to Colorado. Kim slept with Abby on the floor.

Abby’s cries at night kept Kim’s friends awake. Kim wrote emails begging Florida officials for help. But for the first time, she added someone not previously included on the email: this CNN reporter.

Three days later, she learned that the transport had been approved.

A spokeswoman for Florida’s Agency for Health Care Administration gave this statement:

“In this case relocation services are not covered by Medicaid, per federal Medicaid guidelines. However, thanks to Safety Net funds made available by Governor Scott and the Legislature, the state supported this family by covering the costs to provide relocation services via the air ambulance of the mother’s choice. Working with the family, the state arranged transport as quickly as possible,” wrote the spokeswoman, Mallory McManus.

‘The most incredible thing I’ve ever seen’

Within a few weeks of arriving in Colorado, the Muszynskis felt like they’d been visited by not one but two miracles.

First, the high-THC marijuana has almost completely eradicated Abby’s grand mal seizures. When they left Florida, she was having about two to four a week, each lasting about 8 to 12 minutes. In Colorado, she’s had about one a week, and they last only a few seconds: Just a drop of high-THC marijuana oil under her tongue stops the seizures almost immediately.

“It’s the most incredible thing I’ve ever seen,” Kim said.

She hasn’t had to go to the hospital for seizures in Colorado at all.

The second miracle is that so far, Colorado Medicaid has paid for all of Abby’s prescriptions and doctors’ visits without a problem, a far cry from their experience in Florida. All the hours Kim spent fighting Medicaid can now be spent with her daughter.

Now that Abby is essentially free of grand mal seizures, she’s made strides. She can grasp a fork. She can pick up a block and move it. These are small steps for a typical child but huge for Abby.

And more and more, her parents see her personality come out. She smiles and giggles more than she used to, at a balloon floating in the room or when her parents blow bubbles.

Kim and Rich wonder if maybe — just maybe — Abby will one day be able to learn some very rudimentary sign language to express what she wants. Maybe she’ll be able to take a step with a walker and lots of support.

Despite Abby’s improved health, it’s been tough on the Muszynskis to be in Colorado. Two weeks after they moved, their elder daughter, Christina, FaceTimed Kim and Rich from Florida to show off her new driver’s license.

Kim rejoiced with her daughter, but she later broke down in tears, knowing that she’d missed this important milestone. She knows she’ll miss other big days, like cooking Thanksgiving dinner with her daughter and shopping for a prom dress, and prom itself.

And recently Christina, who’s living with her biological father, has been having dizzy spells and fainting. It pains Kim that she’s not there to help her.

On November 8, six weeks after the Muszynskis moved to Colorado, Florida voters approved a ballot initiative giving more patients like Abby access to cannabis with higher THC levels.

And about two months before Kim and Rich left Florida, Medicaid started to give them enough doses of Diastat, the expensive anti-seizure medication they’d had to fight for.

Even so, the Muszynskis said they still would have made the choice to leave Florida.

The Medicaid system there was just too unreliable, they said. They never knew when it would stop paying for Abby’s medicines or her equipment or her respiratory therapist or if it would kick her off the program altogether, as it did three times in less than three years.

“Florida was unable to meet the needs of our medically fragile child,” Kim said. “It ultimately could have resulted in her death.

Health care refugees: Medical marijuana and new hope

‘The most incredible thing I’ve ever seen’

RECENT NEWS & ARTICLES