Today marks three years since I last witnessed Anna have a tonic-clonic (grand mal) seizure. The 4th of July will always have extra significance to me because of this. I can’t say for certain that she will never have another seizure again but I’m definitely more hopeful now than ever before.
I fervently hope that all of my friends who are still dealing with the seizure monster can gain control one day and can celebrate an anniversary like this. Out of all of Anna’s challenges, dealing with seizures was the most stressful and scariest part. At one point, I had emergency meds, an oxygen machine, and a pulse-ox at home so I could avoid taking her to the ER or calling 911. She would get so blue during her seizures and take a long time to pink back up that oxygen became necessary. Some of them were violent and hard to witness. They took a lot out of her too, sometimes affecting her behavior for a week beforehand and several days afterward.
Anna’s first seizure occurred when she was 3; Curtis and my mom were out of town, I was 7 months pregnant with Dominic, and Jenny had a friend sleeping over. Anna was sick with a high fever and I had her in bed with me. I woke up about 5 a.m. to her convulsing and making choking sounds. It will haunt me forever. I remember calling 911 and my voice shaking on the phone. I remember my bedroom being filled with paramedics and how tiny Anna looked on their stretcher. I remember asking a neighbor to watch Jenny and calling her friend’s mother to come pick her up. I remember the Todd’s Paralysis that affected Anna’s right side for several hours. I remember being in the ER, holding her in my lap, calling Curtis and then my mother on the phone, explaining that the ER doctor felt it was a febrile seizure and nothing to worry about. I remember their shock and panic. I thought about her future… school, friends, driving, work… what would she be able to manage? I wondered if her other developmental delays had anything to do with it.
It wasn’t until four months later when Anna got sick again and had another “febrile” seizure in the middle of the night. I put febrile in quotation marks because fever turned out to be a trigger along with fatigue, heat, and stress. I’m convinced that the stress of Dominic’s birth (he was two months old at this point) lowered her threshold enough to have seizures more frequently. I had her at the pediatrician’s office the next morning when she had a second seizure. She needed oxygen and they wanted her transported to Children’s Hospital immediately. That was the first of two hospitalizations she had due to seizures. When she had a third tonic-clonic later that night, Anna’s neurologist gently broke the news that she had epilepsy and would need to start on medication. She had an MRI, blood tests, a spinal tap… I had to find a breast pump to manage my swollen breasts that weren’t getting to feed my newborn. Jenny had to deal with her mom being gone, a new baby in the house, and her little sister being in the hospital. Curtis was traveling for business again… he would end up being out of town for most of Anna’s worst episodes. It was a tough time then. I remember leaving the hospital feeling like our whole world was upside down but everyone else’s world was normal.
Over the next several months, we fiddled with the dosage of Anna’s medication, Trileptal. She was moody and oppositional. She continued having seizures with more and more frequency. We could start to see patterns in her behavior and were grateful that she almost always wanted to lay down and fall asleep before one hit. The tonic-clonic seizures usually lasted several minutes then turned in complex partial seizures for another several minutes. She missed a lot of PPCD (preschool program for children with disabilities… she was going for speech impairment and developmental delay). In November, she had three very violent seizures within 20 minutes and I had to administer Diastat. Her sats were staying in the 80s so we had to go back to the hospital. More tests, no answers. We changed to Lamictal and got liquid Ativan for cluster seizures. The worst point was when Anna had a seizure at school while conscious. She was in PE and fell forward hitting her mouth. The impact knocked out a front tooth and the tooth cut all the way through her lip. Because it was a baby tooth, we didn’t do anything about the gap so she had a whole-y smile for a long while. She stayed on this combination of medication for nearly two years until maxing the dosage. Since she continued to have breakthrough seizures, her neurologist wanted to change medication. After an allergic reaction to Keppra and a toxic reaction to Depakote, I insisted on a break from meds for a few weeks. What do you know? She didn’t have any seizures. And she hasn’t been on any seizure meds since then.
She was five years old. That trial of no meds was good for her epilepsy but left us with a very unhappy, unstable, angry, violent, and dangerous little girl. Her behavior was so out of control that she could not be at school or be near her little brother. After a few weeks, she started on Risperdal and it made a remarkable difference. That is when her journey with atypical antipsychotics began and we are still struggling to figure out the best combination of medications to help her with her mood and behavior (in fact we saw her neurologist yesterday and we are making another change… it’s been a tough summer so far). In order to be placed for kindergarten, she underwent a battery of psychological and intellectual tests. We were told she had MR and PDD-NOS; each new label brought its own set of complications. We’ve since added more labels and diagnoses, but in terms of her epilepsy, Anna continued to have a seizure here and there but with less frequency. July 4th, 2009 was extra hot when we set out to watch the morning parade through the neighborhood. When we got back, Anna laid down on the couch to rest. Within 10 minutes, a massive seizure hit. It was mostly a tonic seizure… she was very rigid and grey. I timed the seizure, made note of the date, time, triggering event, made sure she was on her side and that her glasses were off. She was out of it the rest of the day. I will never forget it.
Anna is now 11 years old. I can’t tell you how amazing it is to not have to worry about seizures anymore. They are scary, unpredictable, and leave you feeling helpless as a parent. Her neurologist said that puberty might trigger them again but we are just happy to celebrate three years of being seizure-free today.
Happy Seizure-versary, Booski!