Special Needs Kids: Temporal Lobe Epilepsy

It began with vomit.

Our daughter, Lydia, had just turned six, and less than a month after that she started throwing up after meals. Not every meal, not every day, but it was perplexing.

The very first time we thought it was the stomach flu. But she never had a fever, and after she rested, she felt better and was even hungry again. It reminded us of how a baby spits up after a feeding, so we thought she had developed reflux.

I took her to the pediatrician, who ordered blood tests and an upper GI. Everything came back normal, but he said she might have intermittent reflux and prescribed a medication. We tried that for a few weeks, and it seemed to help.

It was only shortly after we felt we resolved the issue that she had her first grand mal seizure. To be honest, I have never been so terrified, not even when our older daughter had open heart surgery.

We knew what that was; she was born with a defect and needed surgery and we met the doctor, scheduled surgery, and handed her over to the anesthesiologist. That was nerve-wracking and anxious and sad, but we knew what was happening.

In Lydia’s case, I did not know why she stared at me blankly, why she could not answer me or move her arms and legs at will, why her eyes rolled back in her head or why her mouth moved rhythmically and her arms jerked. All I knew was that I thought my baby girl was dying and the ambulance would not get there fast enough.

She seized for over 20 minutes, and the first responders thought she was bleeding on her brain. After a CT scan in the emergency room to rule out that and tumors, we were transferred to a nearby city that houses an excellent children’s hospital. The next day they did more tests – blood, urine, EEG, MRI. They found nothing.

Kindly but efficiently, they told us, “Sometimes this happens. Kids have a seizure, we don’t know why, and they never have another one.” And so we were discharged, with her belongings in a large plastic bag and a container of emergency medication to administer should she have another seizure.

Over the next six months she began to have funny feelings. Her stomach would feel strange, like it was rising up, and it was accompanied by a déjà vu-like feeling. As she told me, “It feels like I dreamed something and now I’m doing it.” It unnerved her, and she would run to me, body trembling, heart racing, and I would hug her until the feeling passed.

The neurologist she saw in the hospital called to check on her, and when I reported these feelings, they asked us to come in for an appointment, because those might be seizures. After a good check-up and discussion of anti-seizure medication, we decided to schedule an ambulatory EEG, which she would wear at home for 24 hours and see if it caught any of these “funny feelings.”

It did not.

Two months later, she had seven of these funny feelings throughout one day, and the last one attacked her with projectile vomiting. After my husband and I cleaned her up, I ran to the grocery store since I had been unable to during the day. While I was checking out, my cell phone rang. It was my husband, and our daughter was having a grand mal seizure. He administered the emergency medication, and it stopped the seizure. I got home, dropped to my knees by her slumbering side, and cried.

The next day the neurologist told us she had temporal lobe epilepsy, which is characterized by the complex partial seizures, or her “funny feelings,” and that a small percentage of these epileptics also suffer from grand mal seizures.

We had a diagnosis, a name to the hidden creature that had been clawing away inside our daughter, making her anxious and angry and aggressive and uncertain.

We had a medication, which to this day handles her epilepsy well, as long as we keep on top of the dosage in relation to her weight gain.

We did not have all the answers – Why? Why her? Why now, at not quite the age of seven? Why the same week as the phone call from our older daughter’s cardiologist telling us she needed her second open heart surgery, and soon? Why, as our newly diagnosed daughter put it, did we have both our girls with serious medical conditions but our two sons were perfectly healthy?

Almost two years after our daughter began her strange vomiting, we don’t have that many more answers. I have done enough research to be convinced that those episodes were actually seizures, and we had no idea the journey we were just beginning. While we may never learn why epilepsy struck our daughter at the tender age of six, we have learned some things.

The first is that we, the parents, are our children’s best advocates. We must be. We know them best. My husband and I struggled to make sense of the puzzle pieces we were handed that did not even seem to come from the same box – her vomiting, her outbursts, her behavioral problems, her headaches – and although it took a while, we paid attention to everything so that when we did receive a diagnosis, we were ready to order our lives around that, with the end goal of making life as normal as possible for our daughter. Do not underestimate your ability to care for your child’s needs, even if you don’t have a medical degree.

Another thing we learned is how important our doctors are. Our daughter’s neurologist, pediatrician and psychologist are wonderful, caring, knowledgeable physicians, and we are partnering with them to help our daughter. Ask questions, call them, explain your fears and worries and frustrations.

A final thing we learned is perhaps the most helpful. We are not alone. I have met many beautiful, strong mothers who are caring for children in much more dire situations than my own.

If I ever wonder, “Why me? Why us? Why my daughters?” I am reminded, “Why not?” We all have trials and burdens and desert wanderings. This is ours; you have yours. We have been blessed by church and school friends, neighbors, and family who have surrounded us with love, prayers, meals, and childcare.

I seek the answers which I absolutely must have, like how many milligrams per kilogram can Lydia tolerate and what are the results from her lab tests and how many refills are left on this prescription. I don’t ask the whys anymore.

God holds all the answers in His hands, the same ones that cradle my daughter when she seizes, the same ones that guide the surgeon’s hands as he slices into my daughter’s heart, the same ones that reach out to me when I cry.

I’ll wait for Him to tell me when I see Him.

Charity is a mom, wife and child of God. Her handsome husband and four fiesty, fantastic kids occupy her time. She writes on her blog, Four Now, so she doesn’t scream. And then in her spare time she eats chocolate and folds laundry. You can follow her on Twitter at @laanykidsmom.

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