Getting Started
If your child was recently diagnosed, you may feel as if you need to become an expert on epilepsy overnight. Your life may all of a sudden be filled with juggling doctor appointments, medical tests and school meetings. Just managing the medication schedule can be overwhelming. On top of it all, you’re probably being asked to make observations and decisions on things that until recently you knew little, if anything, about.
As with any challenge, it’s important to be as calm, organized and informed as possible. Communication is key. Whether you’re talking to doctors, teachers, family or friends, being confident about asking questions and openly expressing your concerns will help you find the support and services your child needs.
“Denial is definitely a coping mechanism, but it may not be the most healthy one,” said Mary Lou Connelly in an EpilepsyUSA interview. Connelly is a nurse who wrote about her family’s experience in Missing Michael: A Mother’s Story of Love, Epilepsy, and Perseverance. She said such openness was not easy and that at first they tried to shield family and friends:
“We did hold a lot in when we probably should have shared and could have gotten more support from people when we were in a time of need. I think that the book, in a sense, has been pretty liberating for all of us because it just puts it out there.”
There is extensive information and support available online and in most communities through your local Epilepsy Foundation affiliate (organization). Here are some tips on getting started:
- Your first step should be to find and learn to manage the best medical team possible. That means people you not only trust, but feel comfortable talking to about your concerns and questions.
- The Epilepsy Foundation can help you find an epileptologist, a physician who specializes in treating epilepsy
- Download the EpilepsyUSA article "How to Get the MOST Out of Your Next Doctor Visit" (pages 11-13)
- Print and use these forms to help plan your doctor visits and monitor your child’s seizures: Form 1 | Form 2
- Learn all you can about epilepsy. The more you understand, the better you’ll be able to anticipate your child’s needs, find the best treatment and make epilepsy part, but not all, of your family’s busy life.
- Involve and educate others, especially at your child’s school. Work closely with teachers, administrators and school nurses to ensure that your child is safe, has appropriate learning resources and that any teasing or bullying is addressed.
- With your doctor’s permission, your child should be able to participate in most sports, field trips and other activities. While most schools will do all they can to help your child have the best educational experience possible, remember that there are many resources that can assist you if you face resistance.
- Contact your local Epilepsy Foundation for information about programs and services in your area.
- Go online. On the Epilepsy Foundation’s Parents Helping Parents eCommunity, you can talk 24/7 with other parents about medical, social and childcare issues. One mother talks about how an online community helped her explain epilepsy to her recently diagnosed toddler:
“When we first got the diagnosis of epilepsy, of course, we went to the Web. I got on some forums trying to figure out how to communicate to a small child about this. They explained to me in their adult words what it felt like and then we came up with the word ’buzzy.’ So buzzy is a way I use to communicate with her about what's going on. It's a way that doesn't make her feel like she's being set aside, and – according to the folks I was talking to – it's pretty accurate as to what it feels like.”
