A Personal Look at Epilepsy

It has been 13 years ago since I received the most heartbreaking news that my son will never ourgrow his seizures. I was living in the Philippines and he and his sister Teeny, had recently immigrated to the US. Oblivious of what lies ahead, I left my job, my friends, and family; virtually my entire life to be with him. He was 18.

A few days before his 12th birthday, my pager went off. “Jenny, we’re at the hospital. Tristan just had a seizure -signed Meng (my brother in law). I was in my car driving home from work. My head spinned and thoughts were whirling, “What is going on? My God, is he going to die?”.

Minutes later, I was in the hospital and my entire family was there waiting. “Either one of two things: he has epilepsy or has a brain tumor.” I felt my body shudder in fear and my hands were getting cold. Every muscle in my body started to ache. My feet started to go nimble and I slowly stepped out of the room. Behind me was my brother in law Ronnie, who promised me that everything will be alright.

I started to pray,”God take everything away from me, everything I have painstakingly worked hard for, just save my son from death.”

The CT scan was scheduled the next day. The results were calming or at least at that time, I thought it was. The doctor declared “No tumors, this is a case of epilepsy”. We were referred to Dr. Myrna Fores, a Pediatric Neurologist in Makati Medical Center. Dr. Fores had a pedigree of neurologists and she was the best ever. My son was blessed to have her as his physician and confidante. Every month we saw her. At that time, his seizures were controlled by one medication. Who would think that 4 years hence, my son would be taking 4 more medications. And yet , the seizures would still come back and this time, as vicious as it could get. The next one more vicous than the other.

On his 16th brithday, Dr. Fores strongly advised to monitor his seizures for the next 6 months. She warned against any changes or facial distortions that may result at the onset of a seizure – a twitch, eyeball roll, a drool, or slurring . We watched him like clock work. In the meantime, his normal routine went on – school, bike rides, trips to the mall, ice skating , break dancing, basket ball, swimming, etc. Everything was fine, we hoped we thought until one day.

A seizure caused Tristan to stay home for a day to recover. Usually, he ‘d sleep all day and that was that. When we came face to face with Dr. Fores, she sadly looked at my son, “I’m very sorry, Tristan but you will never outgrow your seizures.” Very compelling words from your physician and rather ominous if I had known what I know now.

Tristan was diagnosed with intractable seizure disorder, a type of seizure that comes from one location in the brain. Because of this, he was considered a candidate for surgery. Dr. Fores prepped us for this eventuality. Back in 1997, the technology was available in Singapore and she was ready to bring him with her. However, his father’s petition had come up so we had to cancel those plans. Dr. Fores told us that it can happen in the US. “They have the technology, go get help.”

Almost 8 months after Tristan moved to the US, I received the most disturbing call from my oldest brother in Seattle.”You have to come here as soon as you can. Tristan needs you more than ever. The medication isn’t working and he just had a major attack. They want to monitor his seizures for a whole week and map out the brain to determine where the seizures are coming from. Then they will decide if he is indeed a candidate for surgery.”

It took me less than two weeks to get my affairs taken care of. The last thing I remember saying to my boss was that I’ll be back in December.

Apparently, Tristan suffered from a gran mal seizure , the most grave of seizures one person can have in his entire life. Medical journals have stated that any person can have at least one gran mal seizure in his/her entire life. My poor son suffered from it almost every day. His young frail body was attacked viciously by gran mal seizures. Every morning, my 11 year old nephew woke. “Auntie Jenny, Tristan is having a seizure.” I called 911 almost every time and every time they would lift him to an ambulance headed to Harborview Medical Center, I cried. I was so helpless. It was mind boggling.

In October 1998, he was scheduled for a brain resection. The neurosurgeon had prepped us that everything wlil go on as scheduled. For more than 4 days, Tristan’s head was covered with grids that were connected to a machine. It was the last step before they could even open him up. The procedure mapped out the areas of the brain to clearly see what was going on every time he had a seizure. We prayed for further developments. I prayed that the surgery would push through and he woudl get his life back. Until one day.

End of First of a Series