Except from Epilepsy Durham Region newsletter, July, 2013
Imagine that your four month old child begins having seizures. Then imagine that they receive a devastating diagnosis, whereby epilepsy is one of several very big problems on the horizon. Where do you go? What do you do? Who do you talk to? So many parents are faced with the incredible difficulty of raising a child that has a seizure disorder. They are faced with all of these questions, countless doctor’s appointments, intensive exercise and diet regimes, roadblocks in the school system and all they can ever hope for is that their child gets through the day with a “free pass” from their daily seizures.
This is everyday life for Holly and Barry with their now 14-year-old daughter Katy of Bowmanville, Ontario. Katy first started having seizures at just four months old. After seeking help from many medical professionals, a neuro-opthamologist was finally able to properly diagnose her with Aicardi Syndrome, a rare genetic disorder. It was a tough road for Holly and her husband in those early days. Development and growth for a child is extremely crucial in the first years of life, and in order to give Katy a chance at developing properly they hoped to find a way to reduce or eliminate her seizures. Improvement in seizure control is possible even in the most difficult-to-control infantile epilepsy cases after adrenocorticotropic hormone (ACTH) treatment. The couple decided to go through with the ACTH medication trials with hopes that this may just work for their precious baby girl. ACTH is a treatment that unfortunately has many side effects, though they were advised to keep in mind that those side effects were reversible. Getting control of the seizures was worth the risk. Katy experienced weakened muscles and a compromised immune system; she endured physio and occupational therapy, as well as some cranial sacral therapy. The treatment did miraculously work and she was blessed with five years of seizure-free remission. Unfortunately, as with many other cases, the seizures returned and Katy is now battling startle, absence and complex-partial seizures on almost a daily basis.
“Avoiding a seizure becomes the number one goal every morning as it is her super vulnerable period of the day,” says Holly. “Everybody in the house needs to structure how they move. You don’t close the door. You don’t click the lock. You don’t even sneeze without giving her a sign first so she is less likely to have seizures. Sound, touch, and visuals... every stimuli is a possible trigger”.
Holly and her family didn’t always have to tip toe around the house every morning. Katy had once made it to a five-year seizure-free milestone; however, Katy’s seizures returned and became more and more frequent. “The steady progress with development stalled; it’s hard to get on with the business of growing up when your brain is busy having seizures all the time,” says Holly. “At that point, we knew of only one other child who suffered from the same problems Katy did”.
She first met someone from Epilepsy Durham Region when crossing paths at a local maple festival. Her and her other daughter, Jessica, became more involved with the organization by volunteering and attending as many events as they could. “Everyone I talked to from Epilepsy Durham Region was very approachable,” says Holly. “It’s good to talk to people with similar issues. We have a very supportive family, but you always need to explain certain things. When you talk to people that have dealt with seizures they speak the same language and you don’t have to explain. There’s comfort in that”.
Katy is currently taking two different medications for seizure control, but the pills only help reduce tonic-clonic seizures, which she rarely endures. Holly often finds herself frustrated with the medications, which have many side effects, fatigue being the biggest one. “I’m always telling myself this is not working, but if we try to wean off of the medication the tonic-clonic seizures come back,” says Holly. “So I feel like we’re stuck with these meds that really don’t touch the seizures that she has every day.
To try and combat the side effects we take a lot of things out of Katy’s diet, such as sugar, wheat, dairy, preservatives and additives. The diet doesn’t address Katy’s seizures but it does give her more energy. Also, her dad works with her on an exercise plan and they’ve been able to sustain that five days a week. “I’ve seen a big change. Last year she couldn’t stay up for a whole day being on this medication.”
The diet and exercise regime isn’t the only thing that’s been helping Katy. Until 2 years ago, Katy attended a regular public school and was offered educational assistance (EA) from the school board. Despite the EA staff’s best intentions there were many concerning issues for Holly and Katy. In order to make a small but necessary accommodation for Katy, or even have access to her vital medical information, EA staff would always have to go through the proper channels and this system was not efficient enough for Katy’s needs. “The EA system is not perfect,” says Holly. “I didn’t feel like she was safe at a regular school. They were nice people and when I explained things to them they understood, but in large schools there is always a change in staff members. It wasn’t a stable environment and it got to the point where I didn’t have the time or energy to deal with it. I needed Katy to be in a safe environment.”
Katy is now enrolled in Four Winds Montessori School in Bowmanville, where she gets the proper assistance and supervision she needs. With this school, Holly can simply go straight to Mrs. Moore, Katy’s teacher, and explain day-to-day information about Katy’s condition. Having someone taking care of her who is knowledgeable, attentive and understanding has made all the difference for Katy’s family. It’s reassuring to know that not only is she safe, but also being challenged to reach her full potential, as is every child in the class. “Mrs. Moore is extraordinary and she understands,” says Holly. “Katy is safe, happy and accepted at this school by the other children. It is more like a family than anywhere I’ve ever seen. She is confident there and she’s happy. At least I know that she’s okay there as long as we get through the morning. I don’t know how we would cope otherwise.”
Until a miraculous cure or treatment is found with epilepsy research, Katy and her family are coping the best they can. They are now exploring and considering Vagus Nerve Stimulation (VNS) treatment, a process where a programmable magnetic device is implanted in the patient’s chest wall and acts as a “pacemaker for the brain.” Mild pulses of electrical energy go the brain via the vagus nerve and medical research has shown this to be an effective way to reduce seizures in some cases. Until the next treatment plan, Katy is just focused on her love of music, dancing, High School Musical, Hannah Montana and being a happy, carefree young girl. With the help of her incredibly supportive parents and siblings she takes every day in stride and looks at life in the most positive way she can.
“Katy is the most resilient person that I know,” says Holly. “She’s still happy, and that’s our saving grace. She is taking this in stride as much as anyone possibly could. She’s incredibly strong and that’s what I focus on. It’s what keeps me going. She gives me courage; if she can face the day then I really have no business feeling low”.
Katy is now 20 years old, and still actively involved with Epilepsy Durham Region. She continues to inspire us - she is currently running her own fundraising campaign for National Epilepsy Awareness Month!
Please click here to join Katy in her quest to raise money and awareness for epilepsy.