Sacramento Parent Magazine

I received a comment from another first time mom whose son just had his first febrile seizure. Although I will keep my fingers crossed her son does not have another one, I thought I would share how my husband and I have adapted to living with febrile seizures.

1. Buy out the entire stock of Motrin and put it everywhere. We keep full bottles in the medicine cabinet, kitchen, and several diaper bags. I never leave home without it. Usually the initial spike of a fever is what causes a seizure so be prepared. Side Note: Tylenol isn’t as effective as we learned from the Neurologist.

2. Have several thermometers handy and where you can easily find them. If I could I would keep a thermometer hanging out of every orifice Riley has and a fever strip taped to his head.

3. Watch for the signs of a fever coming on. Riley stops eating and gets very clingy. I have dropped him off at daycare to come back within 20 minutes to take him home when he just seemed off. If I get the mommy vibe I go with it.

4. Learn how to sponge bath effectively. This the most effective way for me to get Riley’s temperature down. I run a tepid bath, put him in it and run a washcloth over his body and as the water evaporates, it cools him off. Don’t let your child get cold because shivers actually raise the body’s temperature. NEVER leave your child alone in the bath in case he has another seizure.

5. Dress lightly. The first thing the firemen did when they charged into my house and threw my furniture aside (I am not joking), was to take his shirt off. Now Riley runs around in a t-shirt and a diaper when he is sick which thrills him to no end because being naked is fun.

6. Relax. It’s okay. I know I am the voice of hypocrisy telling you to calm down since after going through this 8 times, I am still a blubbering mess after each one, but you will scare your child by freaking out yourself. Be the voice of reassurance while you calmly lay him on his side, stroke his back and look at the clock. After a minute, the seizure should subside and he might sleep or might start crying. Either way he’s going to be okay and before you know it, back up and demanding to watch cartoons while eating chips on the couch. (Which you will allow because you are so happy to see he’s okay. I personally think this is fine and encourage you to do whatever makes you feel better. The mom that tsk tsk when they hear this has never had to watch their child convulse for an eternal minute. )

Finally, if you ever feel like your child is not responding or breathing, call 911 or take them to the ER. It’s okay, we have been to the ER more times than I can keep track (Riley also enjoys eating Christmas ornaments), taken an ambulance ride, and called the pediatrician’s office so much they can spell Boltshauser on the first try. I don’t care I want to make sure he’s okay. Besides I am sure Sierra Nevada appreciates the future new mother’s ward that we are personally helping fund.

“Oh honey ,don’t pour the bath water onto the floor.”
“Why?”
“Because it makes a mess.”
“Why?”
“Because everything will get wet.”
“Why?”
“Because the floor will get ruined and daddy will have to replace
it and will be mad.”
“But why?”
“Because I said so!”
“Great, now I have yelled at you and feel bad. Okay out of the tub. Bath time is over.”

Ah, silence.

“Why?”

We arrived at the hospital after having to pull over once so the paramedics in the back could attempt to put an IV in his tiny arm. The ambulance driver tried distracting me with the most inane questions and I vaguely remember being annoyed, Really? Who cares if I saw Daddy Day Care? I realize now he was kind and trying to turn my attention away from the quiet body in the back.

Riley was okay and we thought it was a one time occurrence. . I had one as a child, my niece had one when she was younger. Actually this previous genetic past, is one contribution to his being prone to them. Little did we know we, along with Riley’s poor body and brain, he would endure more. He has seen several different pediatricians, several ER doctors and a neurologist. It was at the neurologist’s office that we realize we were actually lucky. There are many debilitating diseases that can affect a child, as we saw when we were there, waiting for answers as Riley ran circles around the wheelchairs.

He had a EEG and he doesn’t show signs of epilepsy. That day tore a piece of my heart out. Riley’s self-soother is to rub his hair and suck his thumb which was impossible with hundreds of electrodes taped to his head. We both cried while the nurse had me lay down with him and put my hair over his head so he could twirl it to sleep.

It apparently is something he will grow out of. I personally can not wait for this to happen. I wish for this while blowing out my birthday candles, I wish for this when I see a shooting star, I wish for this when I blow the seeds off a dandelion or when someone captures a stray eyelash on my face.

It has been 7 months since the last one and I thought we might, fingers crossed, be done. But as life predicts our journey, he had another one Friday February 1st.

This month marks the anniversary of Riley’s first seizure. February has never been a good month for us. Our dog died in February. As a college student I once hit an elderly woman driving home from work in February. I paid my penance for that one with hours and hours of sitting in the hospital waiting room with her family who proceeded to berate me in Portuguese and broken English. She turned out fine, and was actually cited for not using a crosswalk. I, however, was reminded of the accident every time I drove my car with the dent in the hood.

So 2007 was off to a typical start. Most of the year as parents we were sick with worry, confused and helpless, and then filled with self-pity and anger wondering why our only child would succumb to 7 seizures in less than 6 months. He had them with me, with my husband while I was working, (those phone calls were the hardest), at daycare, and on a fishing trip, the nearest town hours away and I, his momma, was over six hours away arriving at a baby shower and in less than ten minutes leaving in a panic to drive six long, suffocating hours back home.

The first time he had a seizure, I picked him up from daycare since he was feeling ill and brought him home to take a nap. I opened the What to Expect the First Year book, and, being a first time mom, read the section on fevers. I distinctly remembering seeing out of the corner of my eye the page on febrile seizures and briefly thanking my lucky stars I didn’t have to deal with that. When he woke up, he was warm and the thermometer read 100.8, so like any mom would do, I gave him Tylenol and put him on the couch. I proceeded to curl up next to him and that is when my 17 month old crawled into my lap and started convulsing. I was frozen in disbelief. When I realized his eyes were rolled back into his head and he was starting to turn blue, I picked him up and raced up the stairs to call 911. As his little body lay spasming in my arms, I called his name repeatedly. It would be 2 more hours before I would hear the tiny voice pleading, “Momma.”

It was like a dream when the paramedics raced into my house, tossing my furniture aside as they saw it was a toddler in need. They tested his breathing, and when he wouldn’t open his eyes to the chaos around him, a buff young paramedic scooped him up, his tiny body lost in a blue uniform and took the 43 steps up to the street two at a time to put my son in the ambulance.

I was still standing there, staring at the space where all the chaos had happened and now was silent. I could now hear it in the street. Finally, a fireman was in my line of vision, saying, “Ma’am you need to come now and you need to hurry.”

To be continued…