Does Your Child Have Epilepsy? So Do I!

By John Miers

When confronted by an illness in one of their children, parents have a wide range of responses, from cautious and concerned to profound fear.

Nothing upsets parents more than learning that one of their children has a
health-related problem. Parents are nurturing, protective, and want nothing but the best for their children.

When confronted by an illness in one of their children, parents have a wide range of responses, from cautious and concerned to profound fear. This is even more likely if the problem is due to something that they don’t really understand, such as epilepsy. Parents can become overprotective when their child with epilepsy wants to try a new activity, like swimming or riding a bicycle, if the parent believes that there could be a real danger involved in the activity.

Having a seizure can change a child’s life in dramatic ways, and set a child apart from friends and siblings. A child with epilepsy can become confused when he or she doesn’t understand about his/her own condition. Even when they are having seizures regularly, some children with epilepsy have never actually seen a person having a seizure. Or, they don’t understand what happens when they themselves have one. It can be even more confusing when the only consistent parental message seems to be that he or she isn’t “allowed” to do many things that friends and siblings can do. Sometimes, a child with epilepsy may be teased or believe that this will be the case. In addition, having epilepsy usually means multiple medical tests, many doctor visits, and possibly medications.

I’ve been there, too. When I was a baby, I had several seizures. The doctor reassured my parents that I would be fine. But, when I was twelve, I had another seizure. My mother, being a nurse, took me to a pediatric neurologist, who again reassured us that I would be all right—“if it didn’t happen again.” It did happen again. My seizures became gradually more frequent. First every six months, then every three months, and, by the time I was in college, I was having seizures monthly. My epilepsy became harder to live with, but I got used to it—sort of. While I had the good fortune of never being teased, I still did not feel not quite whole. My seizures are still not controlled, but I have an understanding and helpful family.

What advice can I give about to say to your child about epilepsy? First and foremost, parents and children may be reassured by the old saying that God doesn’t make junk. Every single person is a unique combination of strengths and weaknesses. It is also important for everyone involved, both children and parents, to take “ownership” of the disorder. This means being aware and concerned in order to be on top of the situation.

Be frank and honest about just what is going on, what needs to be done, and what should not be done. Doing this can be a difficult and perplexing because parents want to urge their children to do as much as they can, while being aware of specific activities that may pose a threat. Parents and children need to be cautious, but not overwhelmed with fear. Often the physician or health practitioner working with your child can help in setting appropriate limits.

Parents want their child to be healed. Children want to be healed, too. In fact, for many people their seizures are controlled through medication, surgery, special diets, or just over time. While some people do seem to grow out of their seizures, others seem to grow into them. For children and parents, as well as for physicians, the uncertainty of possible outcomes is challenging.

I remember when I was a camp counselor for children with seizures. It was our first night in the cabin. There were about a dozen boys, ages six, seven, and eight, and three counselors. After dinner, we were having “Circle Time,” talking about the events of the day and our plans for tomorrow. I then brought up some specific questions: “What is a seizure?”; “What does a seizure look like?”; “What should you do when someone has a seizure?”. Nobody knew the answers. Most of the younger boys had never seen anyone having a seizure.

Suddenly, almost on cue, one boy had a seizure. I held him and protected him, and sent the assistant counselor for the nurse. The nurse arrived promptly and took him to her office. We then talked about the seizure in the group: what it was, what to do, and what not to do. They learned a lot that night. One child explained how upset he was about his parents wanting him to have a Medic Alert bracelet. When I showed him mine, he felt better.

As parents, what can we do in order to help others live with their seizures? What can we tell our children, their friends, their siblings, their teachers, and other adults? What about the parents of their friends? Most of all, we need to tell them that it is O.K. for our children to play together. We can explain that a child may have a seizure some time, and show them how to handle a child with a seizure. With such information, there will be far less fear.

To educate ourselves, our children, and children and adults in the community, we need to know the latest information from nonprofit organizations like the Epilepsy Foundation of America ( www.efa.org ), government agencies like the National Institute of Neurological Disorders and Stroke, (www.ninds.nih.gov), and our child’s physician. There are also support groups, for both individuals with epilepsy and parents, that can help us learn.

We also need to ensure that our children also know about their epilepsy, including what they can and cannot do, both now and in the future. It is important to be optimistic; it helps to see the glass as half filled, not half empty. It is important to look to the future and to be hopeful. The challenges that we face will change through time, requiring both parents and children to keep abreast of the emerging issues in epilepsy diagnosis and treatment.

Knowledge and perseverance are essential, as well as a positive, optimistic attitude. Good luck!

bio

Currently, I am employed by a federal agency as the Director of its Office of Diversity and Employee Advocacy Programs. I have worked in the federal government since I completed my masters’ degree.

I am active in the disability community, serving as an officer in the agency’s disability organization, and I serve as a Commissioner in the County Commission for People with Disabilities. I have been a counselor for eight years at a local camp for children with epilepsy, and am on the Epilepsy Interest Group at our agency.

I am active in the Episcopal Church, at the local, Diocese, and National levels, and have been trained as a congregational consultant. I enjoy being a member of both the singing and bell choirs in our church.

I am been the Chair of the Board for a local half-way house for persons recovering from mental illness, and was the runner up for the Washington Redskins Annual Quarterback Award for Community Service. I have also represented our county re-building a burned church in South Carolina, and currently work with the chaplain of a local hospital, visiting Episcopal patients.

I am married, with three grown daughters and one 10 year old grandson, and I enjoy gardening.

Note: John is now retired. However, he is still active. He and his wife took a number of trips to New Orleans last year to provide support for those still recovering from Katrina.

JOhn G. Miers, M.B.A.,