Press-Republican

December 5, 2013

Port Kent 4-year-old suffers from epilepsy

By AMY HEGGEN
Press-Republican

---- — PORT KENT — On Christmas Day 2011, Eddie and Angie Sussdorff raced their 2-year-old son to the hospital after he experienced a seizure in his car seat.

Brodie was unresponsive, which doctors later identified as a tonic-clonic seizure that affects the entire brain, common for people with epilepsy.

At the time, Angie was pregnant with her son Elliott, who is now 20 months old. 

Almost two years later, 4-year-old Brodie has had just one seizure over the course of 100 days, though the cause of his epilepsy has not been found, even after a spinal tap, genetic tests and blood work. 

“We had a normal pregnancy. There were no complications,” Angie said.

At 6 months old, Brodie had febrile seizures but doctors brushed them off, she said. 

200 SEIZURES DAILY

Since the tonic-clonic seizure, Brodie has been to Fletcher Allen Health Care in Burlington and has spent months at the Albany Medical College.

“The Ronald McDonald House in Albany was fantastic,” Angie said.

Brodie was having around 200 seizures a day, and some would cause him to fall to the ground or hit his head on the table.

“It was pretty unnerving,” Angie said. 

The Sussdorffs weren’t satisfied with the outcomes at those two hospitals but eventually found a doctor they liked at Boston Children’s Hospital. 

They travel to Boston every three months, but the doctors are out of their network, and the family pays out of pocket for the visits. 

LEAPS AND BOUNDS

After much trial and error, Brodie is now on several medications and supplements, along with a modified Atkins diet, which means that he can’t eat any carbohydrates. 

Soon after starting the diet in January, he went 100 days without a seizure. His most recent one came on Sunday, just as he was reaching another 100-day mark.

Up until the one on Christmas Day 2011, Brodie was developmentally on par with his peers. Now with a 20-month delay, his speech has been affected.

“I wish he was where his peers are,” Angie said. 

He has made leaps and bounds since this summer, though, she said.

“He couldn’t run or jump with both feet off the ground, but now he can.”

Despite the medications, the diet and the many doctor appointments, Brodie is a happy and growing boy.

“He’s fun-loving,” his mother said. “He loves everybody.”

QUALITY OF LIFE

Meanwhile, Angie’s main goal now is to try to prevent further seizures and to focus on Brodie’s quality of life. She worries every day, though, about the possibility of sudden unexpected death, which can occur with epilepsy. 

“It’s still a battle,” she said.

Angie knows only one family in the area with a child with epilepsy, and she would like to connect with others.

“Maybe I could bring some more awareness to our community and maybe get a parent group together,” she said.

With enough families involved, the Epilepsy Foundation would likely bring some education and other services to the area, she said. 

Helpful to the Sussdorffs have been foundation forums online, along with the community, including their pharmacy and Brodie’s day care.

“Our day care (Kids’ Cove) in Keeseville has gone above and beyond anything I could imagine,” Angie said.

HELP FOR BRODIE

A fundraiser to assist the Sussdorff family with medical and other costs is set for 1 p.m. Saturday, Jan. 11, at Murphy’s Bar, 225 Route 22B in Peru. It will include a michigan and chips for $5, 50-50 raffle, live music, a bake sale and Chinese auction. To donate items for the auction, call or text Lindsay Francis at 536-2612.

Reach her by email at daizymay81@hotmail.com or on Facebook. 

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HELP FOR BRODIE

A fundraiser to assist the Sussdorff family with medical and other costs is set for 1 p.m. Saturday, Jan. 11, at Murphy's Bar, 225 Route 22B in Peru. It will include a michigan and chips for $5, 50-50 raffle, live music, a bake sale and Chinese auction.

To donate items for the auction, call or text Lindsay Francis at 536-2612.