“Motherhood: All love begins and ends there.” – Robert Browning… Sunday morning was the scariest day I have ever gone through in my entire life. When Abby was born, things went wrong during delivery. They don’t know exactly what happened – a big combination of things. But they brought the NICU team into my delivery room, and when she was delivered, she arrived white as a sheet, and not making a sound. My mom thought she was stillborn. The faces of the doctors around me were so concerned, I was really scared. They took her away before I could hold her, to give her emergency care. When a doctor arrived to tell me what was going on, about an hour later – she said that we would know by morning if she was going to make it. I remember that moment vividly, and until now, that was the scariest thing I’d ever been through. Until Sunday…

“Life in abundance comes only through great love.” – Elbert Hubbard

Abby has had trouble sleeping for a few months now. But it’s not too bad. Then Saturday night, she woke up ALL night, every hour. She would cry, and ask for weird things – like going for a ride in the car, or to watch Coraline. She never asks for cartoons at night? Around 5am she woke up again asking for milk… I gave her some to help her get back to sleep, and she threw up all over the bed, where she was sleeping with us. But she’s done this before too. I cleaned her up, and remade the bed, and we attempted, once again, to go back to sleep. When she awoke a half hour later, I decided that I’d just get up and start my day – it didn’t seem like sleep was going to happen, you know? I rolled over to sooth her, and she again was crying to watch Coraline. I was about ready to get up and bring her into the living room to watch it – when it happened. Suddenly, she rolled her eyes into the back of her head, her body went rigid, and she began to move erratically. Mike rolled over, totally freaked out, to ask what had just happened. Eyes wide, I couldn’t even talk… I just stared at her, terrified by what I’d just seen, only half awake, and unable to process it. Finally I just got up to bring her to watch her movie, and wake up enough to figure out what had occurred… Before we even reached the living room, as I held her, it happened again. Both times it lasted only around  5 seconds – but it was incredibly scary. I ran back to the bedroom with her, crying heavily, and told Mike to get up – I thought Abby was having seizures, and we were going immediately to the ER. We rushed to get ready, and headed off for what would turn out to be an even more terrifying day than we could imagine…

“You can’t think how I depend on you, and when you’re not there the color goes out of my life.” – Virginia Woolf

We arrived at a mostly empty ER around 6:30am Sunday morning, and were quickly taken into an exam room. Abby seemed to be acting normally, sitting on that big hospital bed, playing with her stuffed monkey. She had no fever, but an elevated heart rate. The doctor ordered some tests, and we did what you do most often in an emergency room – wait. After about 45 minutes, the nurse arrived to do blood work. As she held Abby’s arm, and Daddy held her other side, and I was holding her legs, and they prepared to draw blood – Abby’s head once again snapped back, her eyes rolled wildly, and for 2-3 seconds she was seizing again. We panicked – but the nurse continued and poked in the needle. Abby SCREAMED… then it happened. Her whole body went stiff, her arms and legs began jerking wildly, her eyes rolled and her head shook… And it didn’t stop this time. We yelled that she was having a seizure, the nurse said, “I see.” Did nothing. I ran to open the door, and called for the nurses to help. They just stared at me. I SCREAMED at them to do something, and turned to look at Abby, and she was still convulsing… I didn’t know what was happening, but in that moment, I thought I was losing my little girl. {Tears in my eyes just thinking about it…} I heard the panic and fear in Mike’s voice, and felt so incredibly helpless as I watched my sweet baby girl in such a state. Finally… After almost a minute of this, the nurses helped us. They put the bed rails up, so she would be safe from falling. They gave her an oxygen mask so she could breath. And we waited. And waited. It felt like hours before it stopped – but it was about 3 1/2 minutes. {Which is an incredibly long period of time when you’re watching your child have a seizure. The longest 3 1/2 minutes that exists}.

When it was over, they decided to take her right away to have a CT scan, since she would be groggy for a little while, and would hopefully be able to stay still. She was back about 10 minutes later, but wasn’t aware of who we were for another 30 minutes or so. She alternated between scared screams of confusion, and falling almost asleep as I would sing to her… You Are My Sunshine. We would watch her heart rate on the monitor – normal toddler heart rate is around 120. Her’s was topping 200, which was very scary to watch. Finally, we were moved from the ER to Pediatrics, where we had an incredibly compassionate, kind, and knowledgeable team to care for her. Much better than the ER. Abby slept most of the day, which is what they wanted her to do. A seizure makes you incredibly exhausted. The blood work had come back fine, the CT scan was fine, and they were very unsure of what was going on… Until finally, Abby showed that she was running a mild temperature. The doctor said that was the best news we could get. And I learned about a form of seizure that I had never heard of before, but is more common than I would have ever guessed….

Febrile Seizure: A febrile seizure is a convulsion in young children that may be caused by a spike in body temperature, often from an infection. Watching your child experience a febrile seizure can be alarming. And, although a febrile seizure may last only a few minutes, it may seem like an eternity to you.

A febrile seizure occurs in about 1 out of every 25 children between the ages of 6 months and 5 years. {Click it to tweet it.} I can’t believe that I had never heard of this before? And after asking for advice on Facebook, I had so many friends who have gone through this as well. A febrile seizure really can’t be prevented – so you should never feel guilty that perhaps you did anything wrong. The seizure is often the first sign of illness, and happens like it did to Abby – before she even registered as having a temperature. So there is just no way to prevent it. After they have one, {or even several, like Abby} the child will be very confused, and incredibly drowsy. It’s best to let them sleep it off, as long as needed, which is what we did. We were nervous as she slept – each movement made us jump – was this another seizure? But she slept peacefully, and did not have any more of them – thank God. The doctor was waiting for her to wake up, so we could see if she had fully recovered… I was so anxious. I am a worrier at the best of times, and this was just so stressful. My stomach was in knots, my brain running a million miles an hour, and my nerves were just shot.

Recovering from a febrile seizure

Once Abby awoke, the doctor came in to examine her. He tested a few reflexes, listened to heart and lungs, the basic stuff. She was crying for “dinner” and “bites,” so he had me hold a snack to encourage her to walk towards me. He untangled all of the cords and IV’s attached to her, and set her down on the ground so she could come to me – but her legs didn’t work. She took a step away from his hands that held her up, and dropped to the ground. She was clearly scared and confused, and it broke my heart. And I was terrified that she was not going to be ok, that something had been damaged to her, that she wouldn’t recover, that there was a bigger problem. Terrified. But very soon, she was able to not just walk – but RUN – into the lobby of Pediatrics, with the nurse scrambling behind her, pulling the IV stand – to see the “fishies” in the big tropical tank. Once I saw that, much of my fear evaporated. She was still a little “off,” but the doctor agreed that it would be best to head home with her for the night, and get some rest. The next day {Monday} she was still very off balance and having dizzy spells, which we told the pediatrician about at our follow up appointment. She said that the effects of a febrile seizure wear off within 12 hours – so we’re hoping that it’s whatever virus she has, the virus that caused the original fever, that’s making her act different. But – they are not 100% sure that this was a febrile seizure. So at this time, we have to watch and wait – wait to see if she gets better and back to normal, and watch for additional seizures WITHOUT fever, which would be a clear sign that this is a bigger problem.

Facts about Febrile Seizures

Since I consider myself to be pretty medically savvy, I was shocked to not know about a condition that affects so many kids. If I had known what this was, I might have been slightly less panicked when it happened. {Not much, but a little.} So I wanted to share what I’ve learned with you, so you can be as prepared as possible if this unexpected scare ever happens in your family.

• What is a febrile seizure? Febrile seizures represent a unique response of a young child’s brain to fever. Fortunately, febrile seizures aren’t as dangerous as they may look. They’re usually harmless and typically don’t indicate a long-term or ongoing problem.
• What causes a febrile seizure? Most febrile seizures occur because of a sudden spike in body temperature, and most occur during the first day of a fever. They are often the first sign that anything is even wrong. The fever is usually caused by a virus of some type, anything from a common respiratory illness to an infection like Roseola. Sometimes they are caused by fever from immunizations.
• What do you do if your child starts having a seizure?  {Click to tweet, and share the info.} There isn’t much anyone can do to stop a seizure, although a medical team can administer medications to halt it once it’s past 5 minutes. So your first step is to make sure the child is laying down on a flat surface, on their side if possible, to reduce risk of choking if they throw up. Move all nearby objects away, and place a blanket under their head if you’re on a hard surface. Loosen clothing at the neck if needed. And call 911 right away. {It’s better to have them already on their way and not be needed, then wait until the seizure has lasted too long, and you must wait even longer for them to arrive.} If the seizure ends quickly before you have called 911, take them to see a doctor for evaluation right away.
• What is the treatment for a febrile seizure? Most often, there isn’t much treatment.  They will run blood work, urine analysis, and do a physical exam – to try and determine what caused the fever, and make sure they didn’t injure themselves during the seizure.Unless your child needs treatment for the underlying infection or virus that has caused the fever, they will be checked out by a doctor, and released back home. It is super scary to bring them back home again, but since most children will not have another event, it’s safe, and the best option.
• Can you prevent a febrile seizure? No, you cannot prevent a febrile seizure. Some people suggest giving your child a cool bath, cooling them with damp clothes, or giving fever-reducing meds will prevent it – but they aren’t going to prevent a seizure from happening. As I mentioned, often the seizure is the first sign anything is wrong, before the fever even shows up. So there is just no way to prevent it, you just do your best to care for your child during and after, if one occurs.

So what happens next, you’re probably wondering. Well, hopefully for you, and for us, this will be the ONLY febrile seizure your child ever has. Only about 30% of kids who have had one febrile seizure will have another one with a future fever – and out those who do, only 30% of THEM will ever have a third one. Most children grow out of this by the time they are 5 years old. There is no evidence that it affects their intelligence or development. While absolutely terrifying to watch, they are not at all as dangerous as they appear. But since in very rare cases, the child has an underlying seizure disorder such as Epilepsy, and their first seizure was simply triggered by the fever. But this is very rare, and nothing to worry about. If your child has another seizure, in the future, without a fever, then this is something you will need to discuss with you doctor. We’re praying that this really was a febrile seizure {the doctors are pretty sure, but not totally}. And hoping that this isn’t any type of sign of other issues. And Abby doesn’t seem to remember what happened, so hopefully it fades away into another of those frightening moments that all parents have to endure as they guide their little ones towards adulthood.

“We do not remember days, we remember moments.” – Cesare Pavese

While watching your child have a seizure is one of the scariest things in the world, it is not the end of their world, or yours. A seizure is almost never life threatening. A febrile seizure is not going to cause long-term damage to your child intellectually or developmentally. Learning the basic steps on how to care for a child who is having a seizure is very important to ensuring their safety during an event. So I encourage you to share this post with other parents or caregivers that you know. I wish I had known more about these before it happened to us. It would NOT have made it less terrifying, but I would have felt a little less helpless, and would have at least understood a little bit better what was happening to her.

“True wisdom lies in gathering the precious things out of each day as it goes by.” – E.S Bouton

UPDATE: Unfortunately, what Abby suffered from on this day turned out not to be a febrile seizure. I’m working on a full update post, with more information – coming soon. But, for now, here’s the basics. She had more seizures. The first one, she again had a very slight fever when the paramedics arrived. But, that can be common after having a seizure, since you’re body is in distress. Also, we found that after many more seizures, she had certain things that were “triggers” – making her more likely to have the seizures. Any time she was slightly sick and got a fever, we had to treat it right away. Being overly tired or stressed. We started to see the warning signs earlier, and could sometimes predict the seizures. For months, we would be in and out of the ER and the pediatricians office, but no one knew what was wrong, could find a problem, or would medicate. Finally one day, a new ER doctor decided enough was enough – it was time for meds. The process of starting her medication, called Keppra, was horrendous. Side effects say things like – changes in personality, thoughts of suicide, complete legarthy. In a 2 year old, it meant complete and total melt downs, where she would cry in absolute heartache – and look to us, and you could tell she had no idea why she was feeling that way. We started to think we could no longer let her go through it – but at about 2 weeks, she evened out. It still changed her each day – about 30 minutes after taking her dose, she would become a different child for about an hour, almost bipolar in her mood swings. But then would go back to her normal happy-go-lucky self an hour later.

And, she has now been seizure-free for over a year, since starting on her medication. We’re hopeful that she will grow out of them – the younger a child is when starting seizures, the more likely it is that they will grow out of it. In another 6 months we will have new rounds of tests, and possibly be able to wean her off of her medication. *Fingers crossed.*

If you have a story about seizures to tell, more information to share, I would love to hear it – as I’m sure everyone else reading would too.