By Starrla Cray
WINSTED, MN Ten to 100 times a day plus countless more times at night Behr Vogelpohl’s 4-year-old body is wracked with seizures.
Behr’s parents, former Winsted residents Ben and Kelly Vogelpohl, have seen it over and over again, but it doesn’t make it any easier. Their son has a rare form of epilepsy called Lennox-Gastaut Syndrome (LGS), and there is no known cure.
“It’s a very bad seizure type that neurologically devastates children,” Kelly said.
The first sign Behr had epilepsy was at 15 months old.
“He would fall down, which might seem normal for a 1-year-old, but he’d always fall the same way,” Kelly said. “Before that, he was a very normal baby; he hit every milestone.”
Kelly took Behr to the doctor, but since Behr seemed fine at the time, they weren’t able to help. After doctors saw a video recording of the seizures, though, they recommended Behr see a neurologist in Minneapolis. From there, Behr was referred to Minnesota Epilepsy Group in St. Paul.
“A specialist was sending us to a specialist. I thought, ‘This can’t be good,’” Kelly recalled.
Behr was diagnosed with infantile spasms, and was given at least 20 different medications to try over the course of the next two years.
Unfortunately, nothing worked.
The family also tried the ketogenic diet (high fat, adequate protein, low carbohydrate), which is reported to be a safe and possibly effective way to treat this condition. But that didn’t help either.
“We’ve been in and out of hospitals for months,” Kelly said.
Since September 2016, Behr has been receiving care through the Mayo Clinic, which was where he was given the LGS diagnosis. According to the Epilepsy Foundation, one-fifth of children who have had infantile spasms develop this syndrome, and most children with LGS suffer intellectual impairment.
In Behr’s case, his brain is at the level of a 9- to 12-month-old, but he’s still able to run and play.
“He’s like a baby who is really active,” Kelly said.
The family is concerned for Behr’s safety, because he isn’t able to learn from his mistakes, and repeatedly gets hurt in the same ways.
“He’s also getting tall enough to reach my hot stove in the kitchen,” Kelly said.
In order to give Behr freedom and safety, the Vogelpohl family is hoping to buy Behr a service dog from 4 Paws for Ability in Ohio. Behr can be tethered to the dog, and it will be specially trained to meet Behr’s needs.
The seizure assist canine will also alert Behr’s parents when he’s having a seizure at night. Kelly said Behr is at risk for Sudden Unexpected Death in Epilepsy (SUDEP), which happens to 1 out of every 150 people with uncontrolled epileptic seizures each year. If seizures are controlled, the risk of SUDEP decreases to 1 out of 1,000.
Another purpose for the service dog is comfort.
“It can come with him to the hospital, and for blood draws,” Kelly said.
The dog will also help Behr feel less isolated, since it’s difficult for him to play with other children right now.
Behr is currently non-verbal, but Kelly said she believes his ability to speak isn’t completely lost.
“Before this happened, he used to say ‘kitty’ and ‘bye-bye,’” she recalled.
He also loved “The Nightmare Before Christmas,” and would excitedly shout “Jack! Jack!” at the appearance of his favorite character, Jack Skellington.
Now, he doesn’t remember his favorite movie, but there are occasional sparks of hope.
“One day, he might say ‘peekaboo’ clear as day,” Kelly said.
The Vogelpohls have been told that surgery is the only option to get Behr’s seizures under control, but there are risks.
One type of surgery would only offer a slight reduction in seizure frequency, which may not help the overall situation. Another type would result in right eye peripheral vision loss, but would be able to control the seizures somewhat better. The only surgical option they’ve found that would completely get rid of the seizures would also leave Behr unable to use his right side.
Kelly and Ben don’t want Behr to lose his mobility, since he loves being active.
“I say ‘rawr!’ and he squeals and laughs and runs away,” Kelly said. “He’s a smiley, happy little boy.”
The Vogelpohl family is still exploring surgical options, but they’re also finding ways to make Behr’s life better in the meantime. Kelly said the service dog will be a big help. The wait time for a dog is 18 months to two years, and the cost is $34,000. Of that, 4 Paws for Ability is donating half, and the Vogelpohl family will need to pay $17,000.
In order to help with funding, a shoe drive is being conducted through Saturday, April 1. Already, area businesses, schools, churches, organizations, and individuals have stepped in to help.
“We are humbled by the outpouring of kindness and willingness to help our son,” Kelly noted. “These communities are going above and beyond for our family. We are blessed, for sure.”