When your child is diagnosed with epilepsy, you may be filled with fear and sadness. Epilepsy experts and moms share tips for coming to terms with an epilepsy diagnosis and how you can take care of your child — and yourself.
An epilepsy diagnosis may be confusing — there are many different forms of the seizure disorder. Be sure to talk to your child’s doctor about his or her particular situation, and consider these tips following the diagnosis.
Don’t blame yourself
Angus A. Wilfong, M.D., medical director for the Comprehensive Epilepsy Program at Texas Children’s Hospital explains, “We make a specific point to let moms know that their child’s epilepsy is not their fault and that there was no way to have known this was going to occur, and nothing that could have been done to prevent it.”
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Educate yourself about your child’s epilepsy
Wilfong explains, “Families need to know how to deal with seizures when they occur and how to use abortive therapies if needed. Certain safety precautions may also be necessary, particularly around water and of course, [he should be] wearing a helmet while riding a bicycle, as all children should. Living with epilepsy is very similar to having a child with most other chronic conditions, such as asthma or diabetes. A healthy lifestyle is important including proper sleep and exercise and taking medications regularly and on time.”
Educate others, too
You may be concerned about sharing your child’s epilepsy diagnosis with others.
Patty Osborne Shafer, R.N., M.N., community manager for Epilepsy.com, says, “Adults who are in a position of responsibility for the child should be informed. A child’s friends or people he or she spends time with should also know. However, talking about epilepsy with children is done differently for different age groups. Ideally it’s done in a way that helps the friends understand what it is , [and to] see the epilepsy as just a part of their friend and not something that defines him or her, and helps the friend know how he or she could help if a seizure occurs.”
Don’t take “no” for an answer
Erin Leyden’s son, Emmett, was diagnosed with a form of epilepsy called Doose syndrome when he was 2 years old, and at times had up to 200 seizures a day.
Leyden started the American Epilepsy Outreach Foundation (the group eventually merged with the Epilepsy Foundation of Greater Chicago) to raise awareness and provide hope, support and inspiration to those living with epilepsy and their families.
She encourages parents to “educate themselves and to never settle.” She adds, “One seizure is one too many. The sooner you stop the seizures the sooner the brain is trained not to seize. If you have a doctor that you think doesn’t know his stuff, get a second opinion, get a third, get a fourth!”
Take care of yourself while taking care of your child
Jennifer Bourgoyne’s oldest child developed epilepsy when he was 8 years old. “I would suggest counseling for the parents if they experience a high level of worry about their child,” she says. “Our job as parents is to make sure our child feels secure and that things are indeed in control. If you feel you are having anxiety about play dates, sleeping [or] school, it would be a huge help to hear other parents and how they cope by attending support groups.”
Leyden agrees — she found support online, too.
“Yahoo Groups was our saving grace,” she says. “It has been almost seven years and I am still very good virtual friends with many of the families that have walked the walk. We have cried for each other and have celebrated each other’s successes. They have been like family through it all. There were many late nights I’ve been on the computer asking questions and reading inspirational stories and have then in return have been able to enlighten others with our own success.”
Even if you don’t feel you need professional support in this way, Osborne Shafer stresses the importance of nurturing your relationship with your partner. “Don’t let epilepsy run your family life,” she says. “It’s part of it but not the whole thing.”
Remember there is hope for your child
Dr. Wilfong explains, “There many excellent treatments available nowadays for children with epilepsy. Some treatments may offer a cure. Even for children that have very difficult to control seizures where brain surgery is not an option or may have failed to control all of the seizures, new advancements in diagnosis and treatment are being made daily. This is a very exciting time in neurology and neuroscience and children are benefiting from our discoveries leading to improved qualities of life for them and their families.”
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Bourgoyne’s son has been off medications for nine years. He’s also just graduated college with a degree in English so no permanent damage was done that he couldn’t rise above and achieve all his educational goals, she explains.
After seeing numerous doctors and trying different medications and diets, Leyden’s son recently celebrated one year medication-free and six years seizure-free.
“There is hope,” she says. “Emmett is living proof.”