Finding her rainbow

Melissa Randolph has a harrowing story about the health problems that hit her daughter Suzy, and how the fallout from those issues snowballed into her own mental health struggles.

She acknowledges, however, that she and her family would be much worse off if not for the benefits available through Highmark, the insurance provider for the Allegheny County School Health Insurance Consortium (ACSHIC).

Suzy, 6, was diagnosed two years ago with Lennox-Gastaut Syndrome.

Lennox-Gastaut Syndrome is a rare, hard-to-treat form of epilepsy that’s often medicine resistant, Randolph explains. Those with the condition experience a variety of seizures and often have severe developmental delays.

Randolph, a special education teacher at the Allegheny Intermediate Unit, sensed something was seriously wrong with Suzy when she had a seizure in March 2019. The Randolphs were told Suzy had influenza.

A week later, Melissa took Suzy to see her pediatrician, who directed her to take Suzy to a neurologist. The neurologist scheduled tests for later that spring.

In the typical, normal, busy American family at the Randolph home, life went on. The Randolphs have two other children — William, 10, and Lucas, 9.

On April 11, 2019, Suzy had another seizure while at daycare. Tests determined she had epilepsy.

The summer of 2019 was filled with hospital stays. One medication became three and Suzy was still experiencing seizures. Melissa took a medical sabbatical in the fall of 2019.

“I was overwhelmed by Suzy’s diagnosis and couldn’t be the teacher I wanted to be,” she says.

In fall 2019, Highmark offered a monthly call from a nurse consultant.

“We talked once month and she really helped me,” she says. “And I almost said no to the help.”

By early 2020, Suzy was on four medications, and she underwent surgery for a vagus nerve stimulator with the hope it would stop the seizures.

“It didn’t work out that way,” Randolph says. “The winter came and went, and I started getting severely depressed.

“I was in a very, very dark place.”

Highmark stepped up and paid for Randolph’s psychiatric therapy, which included talk therapy, transcranial magnetic stimulation and ketamine treatments.

In spring 2020, Suzy was still having seizures. That’s when the nurse consultant told Randolph the Cleveland Clinic was in the Highmark network.

“We were amazed at how Cleveland handled this,” Randolph recalls. “They kept Suzy for five nights and did a six-day EEG (electroencelaphogram). That is amazing. That doesn’t happen in Pittsburgh.”

Suzy had more than 30 seizures during that time, and was now on six medications. More testing determined Suzy was a candidate for brain surgery.

“That was a lot to handle,” Randolph says. “Nothing was 100% certain with the surgery outcome.”

Suzy went in for a roughly six-hour operation on Oct. 16, 2020.

“It was intense, it was hard, something I don’t wish on my worst enemy,” Randolph says.

In intensive care for days after the front temporal lobectomy surgery, Suzy told her father, Chris: “Daddy, cut my head off.”

Shocking words from a 6-year-old, but the Randolphs knew it meant Suzy was talking and, despite the pain, would be okay.

“That was such a relief to know Suzy still had her language,” she says.

More follow-up visits were made to Cleveland.

“All in all, it went amazingly well,” Randolph says. “Thank God for our benefits.”

Another visit to Cleveland in January of this year resulted in good news.

“Suzy is seizure-free during the day with some seizure activity at night, but the new medication she’s on is controlling that,” Randolph says. “The storms are now manageable because when seizures happen, they disrupt your life like you wouldn’t believe.”

Without Highmark, she wonders if she would have even found the Cleveland Clinic.

“Thank goodness I didn’t say no to the nurse consultant,” she says.

Chris, William and Lucas have been supportive to Melissa and Suzy through all this turmoil.

“Everyone’s wish is for Suzy to get better,” Randolph says. “We are a team. Chris often says, ‘We found her rainbow’ — the rainbow that has been over her head the entire time.”