Children's Miracle Network

Ministry Saint Joseph's Children's Hospital

DEVYN PESCHKE

Devyn Peschke

It was December 5, 2002 and one could already catch glimpses of glowing Christmas lights around town, and there was a feeling of the fast approaching holiday in the air. It was on that day that Jerry and Kendra Peschke of Antigo welcomed their newborn daughter, Devyn.

“When Devyn was born we were just ecstatic,” said Jerry. Life, according to her parents, couldn’t have been more perfect.

Four months later, however, they noticed that something wasn’t quite right. “Devyn would sometimes get short of breath and have these ‘episodes’ where she would start having spasms,” said Jerry.

At first, the episodes were very infrequent, but as the days went by, they were happening up to 300 times a day. Jerry and Kendra videotaped one of these episodes, and took it to the emergency room at Langland Memorial Hospital in Antigo.

“They recommended we see our pediatrician, Dr. Ellen Schumann at Marshfield Clinic – Wausau Center. Dr. Schumann referred us to Saint Joseph’s Children’s Hospital in Marshfield where they had the appropriate specialists to diagnose Devyn’s condition,” said Jerry.

Under the care of Monica Koehn, MD, Marshfield Clinic pediatric neurologist on staff at Saint Joseph’s Children’s Hospital, Devyn was hospitalized and diagnosed as having infantile spasms, a serious seizure disorder caused by Lissencephaly. Lissencephaly is an abnormality in the way the brain develops. Such children are typically severely developmentally delayed and have seizures that are difficult to control.

“When Dr. Koehn told us that Devyn had Lissencephaly our world crashed down on us. We panicked,” said Jerry, thinking of his two older children Keshia and Joshua who’ve lead normal lives.

Devyn was immediately given steroids to reduce the spasms, but caused her to be immobile and lifeless. An alternative to medication to treat her seizures was recommended - the Ketogenic Diet. Luckily, Marshfield Clinic has a Ketogenic Diet Clinic run by Dr. Koehn and Tammi Timmler, registered dietitian.

“The Ketogenic Diet is a very high-fat diet that is low in carbohydrates which forces the body into a state called ketosis. In this state the body uses alternative energy sources, which in turn manages the spasms,” said Dr. Koehn.

Although relieved that there might be something that would help their daughter, Jerry and Kendra had no idea what they would be in for with the strict diet requirements. Fortunately, Children’s Miracle Network could help fund some of the necessary supplies to make this diet possible for their little girl.

“The Ketogenic Diet is not easy to follow, and the menu is very restricted,” said Tammi Timmler, Marshfield Clinic registered pediatric dietitian who specializes in the Ketogenic Diet. “The ketogenic dietitian calculates out a set of daily menus for the family to follow." For example, grains and certain fruits and vegetables are not allowed on this diet. Sometimes what works for one child will not work for another, and each case must be fine tuned.”

Devyn’s father agreed, “We have to weigh all her food down to the gram, even water has to be split up over a day. One of us is always up until at least 10 p.m. for her last feeding.”

Where there once was a prognosis of Devyn not evolving to more than a four-month old level, she was now learning how to respond to simple directions.

“Jerry and Kendra have done an exceptional job in working with Devyn. They challenge her and she makes progress,” said Dr. Koehn.

While the Peschkes say they do work with Devyn a lot, they credit a majority of her success to the staff at Saint Joseph’s Children’s Hospital and to Wendy De Namur from the Birth to Three Program. The couple say that the way they were treated and the access to resources they were given through Saint Joseph’s Children’s Hospital were a huge benefit for them. That along with Devyn’s sheer determination, have made progress in leaps and bounds.

“I’m so impressed with Saint Joseph’s Children’s Hospital. As soon as Devyn was diagnosed, there were social workers on hand to share resources with us, like Children’s Miracle Network to help with the costs of the Ketogenic Diet, and the Birth to Three Program that has really helped Devyn grow developmentally,” said Jerry. “We even were offered a place to stay at the Ronald McDonald House when Devyn was in the Hospital.”

Today, four-year-old Devyn attends Early Childhood at Pleasant View Elementary School in Antigo. Although she will never be able to function as a normal child of the same age, she continues to make strides everyday.

“This family has so much grace and love in helping her accomplish what she has. Her development is miraculous,” said Dr. Schumann. “That, combined with mobilizing the right subspecialists, right resources and support at Saint Joseph’s Children’s Hospital is how that little girl became the miracle she is today.”

Patti Shafto-Carlson
Director of Development - Children's Services
cmn@ministryhealth.org