My Third Laser Treatment [Plus: The Cost of the Procedure] The Mystery of Managed Care
[Plus: Reforms in the New Health Insurance Bill] Epilepsy and Dealing With a Career
(All names have been changed)
"Weird epilepsy" is how doctors explained Susan Brooks' condition until her second son Paul was diagnosed with TS three months after his birth. Only then did they realize that Mom also had the disease.
As a child, Susan had learning disabilities, minimal behavior difficulties and skin lesions. However, speculation that she might have TS was discarded quickly because she did not fit into "a pattern". They also ignored angiofibromas, white spots, and shagreen patches calling them acne and birthmarks.
Paul's and her own diagnosis came as a complete shock to Susan and her husband, Patrick, especially since they already had another child Michael who shows no signs of TS. The Brooks, however, have handled the situation thrust upon them in a very positive manner. Susan is content with her life and says she wouldn't trade her boys for the world even though, she acknowledges, "it hasn't always been easy."
The biggest challenge that Susan faces is taking care of things that need to be done even if she doesn't feel well after having seizures. While Vigabatrin has helped control her epilepsy drastically since she first went on it in 1991, she still has 5-10 seizures a month. Fortunately, Paul's seizures are 95% under control with the help of medicine, so they rarely have seizures at the same time.
However, it wasn't always like that. At one point early in Paul's life, the dual situation deteriorated so much that the family moved in with her husband's parents for over a year. Susan's health worsened when she became pregnant with Paul shortly after having Michael, now age 10. Her body, which evidently wasn't ready for another pregnancy, threw her seizures completely out of control resulting in almost daily grand mal seizures.
What Susan remembers of the two year period is vague, and she doesn't remember her second son's birth at all. Paul, who was underweight as a newborn, was diagnosed at three months after having difficulties with feeding and growing. At six months, he started having uncontrollable infantile spasms until he was a year and a half. Later he continued to frequently have four different types of seizures until he was seven. It was Patrick's mother, also a nurse, who took care of them both when they had seizures. Oftentimes, mother and son would have seizures at the same time. During that period, Paul went to the hospital nearly two dozen times and his mother remembers countless emergency room visits and at least four hospital stays that lasted 11-14 days. Although it's not something she likes to look back to, she says, "it was a scary period," and she is glad she has little memory of it.
For Michael, the Brooks' first son, his family situation, which forced him to grow up fast, has not been easy. After moving out of her in-laws' house, the Brooks had a life-line to a local hospital installed in their house, and Michael pushed the button and talked to the staff when his mother needed help. From age three, when other kids are still learning to talk, until he was six, Michael called the hospital 4-5 times telling them "mommy having booboos." Police sat with him and his brother while paramedics loaded their mother into the ambulance and stayed until a friend or relative could take care of them.
Michael has felt anger and frustration over the situation, but has emerged relatively unharmed. His parents have helped him by talking about his anger. He still gets frustrated with the limitations set by his mother's inability to drive, but his mother says, "He is more comfortable in his role now that Mom is healthier, and he can be more of a kid." His grandparents also do their best to help with transportation.
Susan cannot express enough the gratitude she feels toward her husband, parents and in-laws. "Patrick has helped me to grow as a person, take chances, and to try harder even when I had seizures. He's loved me through it all. The quality of life would not be what it is without him. He's the one who cleaned me up and put me back on my feet... My parents and Patrick's parents have been wonderful, supportive, and helpful. They'd be the ones to come and get the kids. They take me and the kids for doctor's appointments, help run errands, and help me volunteer. We couldn't do it without them."
The Brooks, who are Baptists, have never lost their faith through it all in pulling through either. Both Susan and Patrick's fathers are pastors, and faith has been core in the strength displayed by her entire family. Susan cites improvements in health and well being of the family as proof that God is watching over them all.
When asked if she would have had children if she knew she had TS, Susan says she doesn't know and would never try to second-guess herself. She considers both children a gift. "I'm not happy that Paul goes through the things he does on a daily basis, but he brings joy to a lot of people."
She also refuses to advise couples on this issue. " I wouldn't touch it with a ten-foot pole. There is no one formula, and it's a very personal decision. I wouldn't dare say to a parent, 'this is what you need to know' because you don't know. TS is a bizarre disease. It's not like Down's Syndrome where there is a range. It's a constantly changing disease. Each year, I have tubers in my kidneys that I didn't have before. You could get comfortable, and it'll surprise you. It's a 50-50 chance, and it depends on your faith and where you are in it. But no matter what happens, the child is uniquely gifted with a role in this world. And they'll touch people. That's what I focus on. Paul brings so much joy to people," says Susan.
(Click here to read the editor's note.)
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