Almost one year ago the Heskin family of Preeceville was faced with an unexplained medical emergency that left their 18-month-old daughter Chelsa with having multiple seizures a day. Today, the family is rejoicing as their daughter has now been seizure-free for one and half months.
“Numerous tests were performed on her and she was diagnosed with Doose Syndrome or Generalized Myoclonic Astatic Epilepsy,” said Brandi Heskin, Chelsa’s mother. “She was placed on a modified Atkins diet as well as on valproic acid,” she said.
Chelsa was accepted as a patient at the Mayo Clinic after a team of physicians had reviewed all of her medical records. Her appointment was scheduled for October 11.
"We were hopeful that we would finally get some answers as to what was causing her seizures. We were looking forward to going but the strain was huge," she said.
The family’s journey began when they packed up all three of their children and some belongings and left for the Mayo Clinic on October 9.
“We traveled approximately 3,000 miles before we arrived at the clinic,” she said. “At the Mayo Clinic her doctors were Dr. David Hsu and Dr. Elaine Wirrell. Her diagnosis stands ast Idiopathic Generalized Myoclonic Astatic Epilepsy.
“We met with doctors who assessed her and went over her history. Since the medicine previously prescribed by Dr. Richard Huntsman, pediatric neurologist in Saskatoon, was now working alongside the modified Atkins diet (with the restriction of no more than 15 grams of carbohydrates daily), they didn't want to change too much at this point,” said Heskin.
The Mayo Clinic’s modifications suggested filling her daily carbohydrate intake with berries.
“They also encouraged us to talk with Dr. Huntsman about different versions of medications like, for example, using valproic acid sprinkles instead of liquid form and carbohydrate-free Carnitor. The Mayo Clinic ordered certain lab tests be conducted once we got back. They said if her seizures reoccur they will consider autoimmune epilepsy.
“We returned to Preeceville with much relief and answers on October 15,” she said.
Since mid-October, Chelsa has been seizure-free. She's started walking again and acting like a typical two year old. Her obstacles at this point are speech therapy and using proper muscles for walking. She wears stints on her feet to help correct her shortened Achilles tendon and strengthen her leg muscles.
“She has regular blood work done for level checks due to the valproic acid,” said Heskin. “She has an electroencephalogram (eeg) appointment in Saskatoon on December 2 to see where she differs now from constant seizure activity. She also has an eye appointment in Saskatoon in middle of December to see if anything in the eye can determine her condition. We are currently awaiting a hearing test appointment.
Chelsa requires regular physical therapy as well as speech therapy in Yorkton and Canora and regular neurological appointments in Saskatoon.
“We're incredibly grateful for the priceless information the Mayo Clinic shared with us, and feel great comfort in knowing that the Mayo Clinic doctors are now a part of her special care team,” she said. “The Mayo Clinic and Chelsa's Canadian doctors are on the same team, and for Chelsa, the more the better.
“We still don't know what caused her condition, but are thrilled that she is seizure-free right now. We still have a tough road ahead as seizures can reoccur and we need to keep a close eye on her medicine levels which go by her weight and age.
“A huge thank you to everyone who's helped Chelsa and our family on this journey,” she said.
The family expresses gratitude for the support from the Norquay Kin Club, the Preeceville Lions and Lioness clubs, Prairie Soils, Preeceville Agencies, Johnsons Grocery Market, the Pelly Jamboree Foundation, Preeceville School for its iced tea sale, a private Kamsack organization, Norquay Nice Center, Alida, Saskatchewan Ladies Night group, Norquay Lutheran Church, the Gateway Co-op, community boxes, donated auction items, Go Fund Me pages, benefits, family, friends and strangers.