We are a family of four living in Chicago, my husband Gerard, 8 year old daughter Ruby, Hank, who just turned 4, and me, Megan. Hank’s first noticeable seizure was at 18 months of age. This is where the nightmare began and our family was changed forever.
We were told many children have febrile seizures, not to worry, and were sent home. Eventually we began to put the pieces of the puzzle together to help explain all of Hank’s other developmental delays. He was still not walking, and to this day does not speak spoken words. We thought something else was wrong but had a Pediatric Neurologist and Pediatrician tell us that the seizures (which we didn’t know were seizures but had our suspicions) were just behavioral and that we were over-reacting. We knew we were not “crazy” and were not satisfied so we pursued another neurologist when Hank was diagnosed with 7-10 seizures daily. We were so naive when looking back because we thought, “We can handle this and get this under control.”
A few months went by and the seizures increased and we saw our baby slowly slip away from us. The few words Hank just began to babble slipped away, as well as his happy demeanor and developing personality. This is similar to other neurological disorders that seem to take over young children’s physical and emotional lives. By the time we sought out a specialist at Children’s Memorial Hospital in Chicago Hank was in non-convulsion status, where he was experiencing all types of seizures daily. We explored several drugs which were trial and error. Our neurologist encouraged us when diagnosed initially with Doose Syndrome, at age 2, to try the Ketogenic Diet, yet we were hesitant. When we finally took her advice 7 months later, we started Hank on the diet and we thought our darkest days were behind us! Once again, optimism was short lived. We almost lost Hank on two different occasions to convulsion status. The scariest moment for us was watching Hank turn blue form head to toe as he stopped breathing while we were waiting for paramedics to arrive during his most severe grand mal seizure. Unfortunately, close relatives and friends of ours were there to witness this nightmare too.
After days in the hospital while trying to get Hank out of convulsive status, Hank’s seizures took a toll on him. This is also the same time that things began towards the current road of his recovery thanks to several supports that we are so lucky to have now in our lives. First of all is the expertise of the Epilepsy Team at Children’s here in Chicago. They were always right, especially with the administering of the ketogenic diet, in the treatment that Hank needed, yet supportive of our opinions as Hank’s parents all along. A second, yet equally important support that we are so appreciative of is the Doose Syndrome support group. We can not express how reassuring it is to receive advice and encouragement from the network of knowledgeable and caring families from around the world, many of whom we have been fortunate to meet online via numerous emails, chats, skype sessions, and even in person here in Chicago through Children’s Memorial. The final support, that we owe Hank’s life to, is his amazing therapists that have helped him regain his old self back. Hank has just begun uttering sounds and syllables that we have not heard since before this nightmare called Doose began. The aforementioned supports are Hank’s HEROES who have given us hope that Doose Syndrome can be overcome, however small the steps to recovery may be!
Today at age 4, Hank is now able to attend a public school daily, participate in play with other kids, and has been seizure free for over a year now. We know we are not out of the woods in terms of seizures, and we have a long road ahead of us in terms of ensuring that Hank continues to receive intensive therapy on a weekly basis. We are so thankful to be one of the lucky ones as of recently, and our hearts go out to all the families around the world who share with us the battle of a child fighting Doose Syndrome!
The Kovach Family