Helping my Child with Epilepsy

I received the news while I was on a business trip. My 3-year-old son had been diagnosed with epilepsy by Shengjing hospital. How could my son have epilepsy? He did not have the typical symptoms of epilepsy. Once in a while, he would be unable to hold objects and sometimes he would suddenly wake up in his sleep, but those were the extent of his symptoms. I was confused, depressed, sad, and helpless. These thoughts pervaded my mind and refused to leave.

I rushed home as fast as I could. When I saw all eight of my family members, including my grandmother, they were all worried about my son’s health. When I looked into my son’s innocent eyes, I knew I had to do something to help him. For the next several days, I researched the illness on the internet and communicated with Dr. Hua Wang. My wife and I soon realized that epilepsy was not as terrible as it seemed—it could be controlled, and even cured.

The first thing we needed to do was get treatment right away. In the meantime, my wife and I comforted our parents and informed them that epilepsy was slightly difficult to manage, so we should create a positive environment for my son. Of course, we had to let them know that seeking treatment was the best choice. We worked together with doctors, and after a week of treatment, my son’s condition improved greatly. Half a year later, there were no obvious symptoms of epilepsy, and we also adjusted the dosage of his medication. My son was just as normal as the rest of the children his age and was not behind the rest of his classmates. The whole family was relieved and our grandparents no longer believed the rumors surrounding people with epilepsy.

After three years of treatment, my son was 6 years old and his EEG (electroencephalogram) scan showed no signs of epilepsy. At this point, the doctor said that we could reduce the doses of his medication and also gave us strict plans for reducing his dosage. He told us to observe any changes in behavior and to see him for follow-up examinations every three months. We were so filled with joy that we did not completely follow the doctor’s instructions, which led to severe consequences.

In the time between his half-year reduced dose treatments, my son grew from 110 cm to 130 cm, his weight increased from 20 kg to 30 kg, and he did not have any symptoms. We were happy to see him growing and thought that it was the result of his reduced medication dosage, which is why we did not take him to the hospital for follow-ups. A month before he was scheduled to start elementary school, he had suddenly relapsed. We were puzzled. Why? Why did this happen again?

We received the answer from Dr. Wang, a leading neurologist involved with Project HOPE’s epilepsy program. He said that with my son’s increasing height and weight, the reduced dosage was no longer effective. Thus, his condition could not be controlled.

A careless mistake had resulted in a recurrence of his illness. We had no choice but to start over again. We followed Dr. Wang’s advice and spoke with my son’s teachers in school so that they could understand his situation. At the same time, we told my son that he was the same as everyone else, but that he only needed to take medicine. We also encouraged him to participate in school activities that he was capable of doing.

Although the journey was not what we had expected, his condition is now under control. However, we realized that we needed to pay more attention to his behavioral changes, such as difficulty paying attention in class. Any unusual behaviors were reported to the doctor during follow-up exams. Through this experience, we gained a much better understanding of epilepsy.

Dr. Wang then introduced us to the Rainbow Bridge Summer Camp, where we learned more about the condition. After the camp, my wife and I decided to be more conscious about the symptoms associated with epilepsy. We proactively discussed our observations with the doctor and sought the best treatment available so that my son could live a normal life in his future.

For the past several years during my son’s treatment, I realized that epilepsy was not the end of the world. The worst part of the journey was being ignorant, unconfident, and careless. We also realized that love and support from family were the most important parts of my son’s treatment.

I attended the family weekend in Shenyang, Liaoning Province in June 2016, which was organized by Project HOPE as part of the organization’s Supporting Children and Families with Epilepsy Initiative in China. During the family weekend, Project HOPE guided parent-child games and psychologists gave psychotherapy to the families. After attending the weekend and listening to the lectures they offered, I will pay more attention to comorbidity of epilepsy.