The following is only my story about febrile seizures and should not be taken as medical advice by any means. If you have concerns about your child, please consult your pediatrician.
A febrile seizure is a seizure or convulsion that occur in young children and are triggered by fever.
My daughter had been sound asleep for an hour when I started to hear a small difference in her breathing on the monitor. Like every new mother, the baby monitor was attached to my hip. I brought it everywhere with me in the house and practically held it in my hand every second. Having a baby meant you stop playing the music loud, the TV is turned low and you listened and felt every sound, every breath. I heard what I believed to be a gurgling sound. It was slight. Yet enough to make me go check on my then 21 month year old daughter.
I opened the door and peaked in. She was face up in her crib shaking. I picked her up and held her. She kept shaking. I kept saying her name. She wasn’t alert. “Bailey, Bailey, Bailey”, I repeated. In less than 30 seconds I knew something was wrong and I ran to get my phone and dialed 911. I sat there on her pink fluffy carpet on the hardwood floor holding her repeating “please don’t die”. The 911 operator answered and I only spoke swiftly my address. “I have a 1 and a half-year old, come now” and I hung up. I held her, in her fuzzy puppy printed footed pajamas and soft short curls. It was all I could do. I kept saying out loud “please don’t die, please don’t die”, begging.
She finally became alert by the time the EMT arrived. Her big brown eyes groggy at me. She didn’t speak. She didn’t cry. I just held her. I let the EMT come in, there were 3 of them. Two men and a woman with very short hair. I told them what happened. They looked at Bailey and tried to ask her questions. Bailey was just dazed. The EMT told me that it was a possible seizure.
A seizure? My mind raced. How? How was that possible? Is my child epileptic? Would she be okay? Is she going to die?
The EMT said it was time to go into the ambulance. I wasn’t dressed. That night I learned the importance of having a bag packed at all times. I threw a few diapers in my purse, put on pants and they put Bailey on the stretcher. She looked so tiny going into the ambulance. They asked if I wanted to ride with her. I sat next to her and held her hand as the driver tossed on the siren. I did not cry. I knew this was scary for her and executed with little emotion on the outside but inside I was scared shitless. “Baby do you hear the siren? Isn’t that cool?” as I stroked her to keep her calm. She finally gave me a little smile. She was tired.
At the Hospital
We arrived at Hartford Children’s Hospital and they quickly got her out and wheeled her in. We were met by several nurses and hospital workers. They kept commenting on her hair and how cute she was. They kept touching her ringlets as she was rolled down hallways and into a room. All I remember thinking was I don’t give a fuck about her hair, I just wanted to know she was okay. I suppose they were just trying to be kind but in that moment all a new mother wants to know is if her child is okay. There is no capacity when that fear hits for your child, to be polite.
I forgot Snuggy. Snuggy is Bailey’s comfort toy. She, yes it’s of course it’s a she, is a little half blanket, half giraffe that I got for her. At the time, she couldn’t say the word ‘giraffe’, but she could say ‘Snuggy” so snuggle her she did. God damn it, how could I have forgotten Sunggy? All the kid wanted was her Snuggy. One resident went to go find a stuffed animal for her. They brought back 3 animals for her to choose. Even during this time, she was selective on what she chose. 1 stuffed animal deemed good enough and she finally seemed okay as she pulled at the wires on her chest. I started to breath again.
They took her vitals and eventually a doctor came in and after assessing her, deemed she had a febrile seizure. I was absolutely bewildered. I had never heard of this before, why did it happen? Why did no one tell me? What did I do wrong? The doctor explained to me that it can happen when a fever spikes too high too fast in young children and the risk peaks during the second year of life. Fever? She wasn’t sick. She went to bed fine. I struggled to process the information I was getting.
I had heard all about SIDS, read books but not one person, not one article ever revealed that there was potential for my baby to have seizures from a fever. They gave her children’s tylenol but that was it. Again, I struggled. I see my baby shaking like the exorcist and all she needs is a little OTC meds? I did not understand. I was told that after the first febrile seizure there was a 40% chance that she would have another and they would continue until about the age 5. Febrile seizures occur in 2-5% of American children before the age of 5.
Back At Home
I called my parents who lived about 30 minutes away. My Dad came and stayed with us at the hospital. At about 2 am she was released and we went home. I kept Bailey in bed with me that night. At 6 am she seized again. I held her in bed as she shook. I blamed myself. Although I was giving her the Tylenol every 4 hours as directed, she still seized. How could I let this happen? How did I not reduce the fever that I could barely feel existed?
At the ER they explained that her seizures would not need medical attention. If she seizes again, there is no need to call 911. The next day I brought her in to the pediatrician after letting her get a little sleep that was interrupted by administering Tylenol with a syringe.
After seeing the pediatrician I learned that while febrile seizures are not common, they are also not dangerous. Most will have no to little impact on the child or any permanent effects. Over the next 2 years Bailey had 4 more seizures. I can tell you the dates and times of each of these. I will remember them for the rest of my life. Watching your child seize is terrifying, yet it’s important to know, they will be okay. Being a control freak and dealing with something I couldn’t control was hard on me. I felt that what I could control was the fever. I don’t believe in taking medicine to fix things, I’ve never even taken aspirin for a headache. While sometimes a fever is a sign that a baby is fighting off an infection and medication isn’t always needed, my pediatrician explained that in our case it’s okay to administer both Tylenol and Motrin, alternating every 3 hours to fight the fever. My mission became – prevent the seizure by controlling the fever.
Life Being Prone to Febrile Seizures
The next year was a year of little sleep. I know what you’re thinking, all new mothers have little sleep! And while that is true usually around 2 you start to get consistent sleep out of your child. I stayed awake. I watched. I sat by her crib with a flash light listening, watching and taking notes. I wrote everything down. Anything visible that was unusual to me I took a photo of. If she had even the slightest sniffle, I pulled her into bed with me so I could watch her and be next to her should anything happen. It has always just been my daughter and I. My dog felt my intensity and would sit next to me by her crib and we would watch.
On one hot summer day in July I picked Bailey up from school. She was laughing and running around on the playground, totally fine. I brought her home and set her up in my room to watch a movie and chill out for a little bit. I was in the kitchen making her a snack less than 6 feet away and I just knew.
I ran back into my room and she was seizing. I didn’t move her. I just calmly petted her hair and said ‘it’s okay, it’s okay, it’s okay’ and timed the seizure. It was under 60 seconds. She became alert for a minute, I told her it was all okay and then she went to sleep. I called the doctor in the meantime. The doctor said that I did everything right. My kid has febrile seizures and there’s not a damn thing I can do about it. Feeling helpless when it comes to your child is probably one of the most unnerving feelings I have ever felt. I felt alone. At the time I remember pulling myself out of crying and feeling sad for myself, it didn’t matter. I had a job to do. My job was to prevent and react to fevers and I had to stay diligent.
Every single night there was a packed bag with her necessities in it by the door and Tylenol on the kitchen counter. Just incase.
Things to Know About Febrile Seizures
- Moms and Dads, first off, your child WILL be okay.
Kids are more resilient that you think.
- 40% of children who experience a febrile seizure will have a reoccurrence.
- 2-5% of American children have febrile seizures.
- Fever reducing medication is not proven to prevent febrile seizures
- Call an ambulance if the seizure lasts longer than 5 minutes
- Call an ambulance if the seizure lasts under 5 minutes but the child does not recover.
- Seek immediate medical attention on the child’s first febrile seizure and especially urgent if the child shows symptoms of stiff neck, extreme lethargy or abundant vomiting.
- Ensure the child is in a safe place. Do not hold or shake the child.
- Children at highest risk for reoccurrence of febrile seizures are those that include:
- A family history of febrile seizures
- their first febrile seizure younger than 18 months
- A febrile seizure as the first sign of illness
- A relatively low temperature increases with their first febrile seizure
I Hope this Helps
Bailey is now four and a half. While there is still some time in the febrile seizure period (it’s predicted to stop at the age of 5), I feel confident she’s grown out of them. I often read stories of families are going through real disease and I know I am blessed. Bailey and I are the lucky ones, so please believe me this is not a sob story. My absolute heart goes out to those families, the children suffering and to the mothers and fathers. If I’ve barely scratched the surface of watching your child suffer through a medical condition, my god, the strength those parents have is tremendous.
This post is personal to me however at the time, I found little resources or experiences from other parents on febrile seizures when I was researching for more information. I hope my story will not scare you. I hope it will make you aware. I hope it will comfort you in a time of fear. So if this post comforts one mother or father out there whose child is experiencing febrile seizures for the first time, it’s enough.
One last thing I want to tell you that I didn’t have anyone to tell me during this time is that you’re doing a good job. This parenting thing, you’re doing your best. And that is more than enough.
For more information including some of the facts listed in this post please visit http://www.ninds.nih.gov