The first time I saw Phoebe go into a febrile seizure caused by a high temperature, I thought she was going to die. For any of you who have seen your child have one of these seizures, you know the terror connected with them. It’s intense to see your baby go through complete loss of bodily function control, shaking and to stop breathing, turn blue and go unconscious. It was a really long 2 minutes for me.
We ended up going to the emergency room that day and I write more about that first experience here and here.
She’s had 8 more seizures since that initial episode the most recent of which was yesterday afternoon. Every time she has them I learn more and more about what causes them and how they can be treated or possibly prevented. I wanted to share a little bit of what I have learned just in case you have a child who has had or may possibly have them in the future. I believe education is always good when dealing with emotionally charged medical incidents to help guide you through them. I of course am not a medical expert, so all this information is solely based on my personal experience.
- Fevers are a natural and beneficial process of the body to fight infection. Fevers themselves are not dangerous and require no actual treatment. They are a sign that the body is fighting infection and doing it’s job. The underlying cause of the fever is what needs inspection and handling.
- In about 10% of babies and children, when they get a fever they are susceptible to what are called febrile seizures. This is sometimes a hereditary condition.
- Febrile seizures work kind of like the reboot button on a computer. A small body is not capable of processing the high heat levels of the fever and have a seizure to help regulate body temperature.
- Febrile seizures are not normally considered dangerous or life threatening provided they don’t last for an extended period of time (over 5 minutes) or are not clustered together.
- Febrile seizures do not mean your baby will be epileptic or have brain damage.
- I advise if you are experiencing a febrile seizure with your baby or child for the first time you call 911 and go to the emergency room.
- Using fever reducing medicines is not a guaranteed prevention of febrile seizures, however, on the day I tried to not use them, Phoebe had 4 and they would not stop until I administered fever reducing medicine.
- Fevers and seizures may be an indication your child is calcium deficient. I had success last night reducing Phoebe’s fever naturally through calcium supplements. Here is a very useful article on the subject.
- I have a plan in place with Phoebe’s doctor and neurologist that when she has a febrile seizure it can go up to 5 minutes before I call 911 or take her to emergency. If the seizure continues and is not stopping, as a last resort there is a drug to use to stop the seizure. It is possible Phoebe will have seizures connected with her fevers up to the age of 5 or 6. I work to prevent illness in the first place through nutrition and helping her stay emotionally unstressed.
Here are some tips that have helped me deal with Phoebe’s seizures:
1. When she is seizing I hold her on her side and ensure nothing is in her mouth and if she is wearing clothes I strip them off her body and remain silent. I keep her away from anything she could hit her head on while seizing. Here is a great short article on what to do during a seizure.
2. I have learned how to remain calm during the seizures and not say anything to her or anyone else while she is seizing. I believe that by not introducing further stimuli or distractions it has helped her gain control of her body again and as well gain consciousness. During her first seizure I was completely freaking out which didn’t help her or her sisters who witnessed it.
3. I keep track of how long they are going and am ready to call 911 if it starts to progress longer than 2-3 minutes. I factor in how long it would take an ambulance to arrive and how long the ride to the hospital would be if the seizure started to extend to dangerous lengths. 3 minutes is about the time I would call 911 so they’d be arrived by the time it started to progress past 5 minutes.
4. I have found I need to treat her fevers with a fever reducing medicine, but we did have some success last night with using a calcium supplement and I am hopeful I will be able to go that route with the treatment and prevention of her fevers.
5. Hospital visits for seizures are often just waiting, testing and monitoring periods to try to find the source of the infection or what is causing the fever.
6. For the most part I know my child will be ok, but I am not flippant or casual about it. Febrile seizures can escalate to dangerous medical situations, so be aware, seek medical help or advice and be prepared.
7. Phoebe usually gets sick after she has a fall of some kind. When she falls and after she has calmed down, I allow her to tell me about it and get her to point out where it happened. We also use chiropractic treatment to help adjust the spine and keep the nerve flow in the body free and open.
I am always happy when she is back to her old self again.
Does your child have a history of febrile seizures? Do you have any stories or helpful advice to share?
Great post. My daughter had a febrile seizure 8 months ago. It was terrifying and I wish I would have known this information back then. I took all the classes and never heard of this so I appreciate you sharing your experiences. I hope Pheobe is felling better
She is! Thank you. I know, you are not really taught this info anywhere.
Wow. You covered a lot very concisely! Thank you! I love that you really are working to keep a grip on this, which I know is so challenging. My daughter had a febrile seizure when she was 8 months old. I actually had NO clue what was happening and in retrospect wish I had known about febrile seizures a long time ago. In our case she did not visibly shake, but was staring fixedly upwards, not blinking or responding to stimuli. It took me about 60 seconds to realize something was very wrong. We raced to the hospital (it would have been smarter to call 911 and have an ambulance come to us – but I had no clue what was happening). My daughters seizure was outside the normal parameters of febrile as it lasted for over 15 mins and turned on again for another 10 mins. With this came an extraordinary amount of testing to rule out all causes. We were in the hospital for 2 1/2 days. In the end she passed all tests with flying colors (big sigh) and the docs finally concluded it was simply a febrile seizure. Since then I did a lot of research and you have covered so much, so well. The only things that I would add which I consider key are;
- based on research, talking with docs and neurologists, there is strong evidence that such a seizure will take place at the very beginning of the illness (with an inherent fever). We actually had no indication other then some crankiness that she was sick at all.
- It also has nothing to do with the actual level of the temperature, but only a huge spike in body temp. In our case, when we arrived to the hospital my daughters temp was 101.6, nothing dramatic.
- there are additional symptoms of seizures that are not known which can help one identify when this is occurring. This covers it well, I’m including a link to this source at the end
“Abnormal muscle contraction, such as abnormal head movements
Staring spells, sometimes with repetitive movements such as picking at clothes or lip smacking
Eyes moving from side to side
Abnormal sensations, such as numbness, tingling, crawling sensation (like ants crawling on the skin)
Hallucinations – seeing, smelling, or sometimes hearing things that are not there
Abdominal pain or discomfort
Rapid heart rate/pulse
Other symptoms may include:
Blackout spells — periods of time lost from memory
Changes in vision
Sensation of déjà vu (feeling like current place and time have been experienced before)
Changes in mood or emotion
Temporary inability to speak”
My son has myoclonus (epilepsy), so I have seen many many seizures. Despite that I shake and cry every last time.
I made sure to have my local Epilepsy Foundation train his school on Epilespy first aid, as many people have misconceptions (such as that you should put something in their mouth) on what to do in the event of a seizure. I also have Diastat on hand at home and school and the teachers are all trained on how to administer it, training was also done by the foundation. Luckily I have never had to use it, but it is what the Ambulence will give them to stop a seizure that goes over 5 minutes,
After 9 failed pharmaceutical drugs not working to control the seizures, I have them completely under control with CBD, cannabis with only trace amounts of THC and in tincture form. Mother Nature has a cure for everything!
I NEVER let my sons fever go above 100. Period. No risking here after getting 25-30 seizures a day under control and my son being seizure free for the last 4 months!
I can hardly imagine what this would be like for both you and your boy. Thank you so much for this comment, I am sure it’s hard to stay objective. Good job on seeking out answers to help your boy.
I know the terror of febrile seizures well and thanks for the tips:). My daughter had one about a year ago. I partly blame that we interpreted her fever chills as a sign she was cold and we bundled her up, leading to a fever spike. Now, we know not to do that.
We also now, at our pediatrician’s rec, give her fever medicine if she has a temperature of 100 degrees or higher.
Finally, one other tip – friends of mine whose daughter has had many seizures now carry around a card detailing what to do in the case of a seizure in case they forget. Here’s how it looks: http://hintmama.com/2014/07/14/todays-hint-the-medical-emergency-response-reminder-card/
She may have had it regardless of the bundle. Thanks for the link!
This post was a long time ago but my daughter just suffered her second febrile seizure and I’m having a very very hard time. Although this one was shorter, not as intense (she did not turn blue) and I knew what to do and what was happening, I feel I am having a harder time (although I was very calm and collected during). I have spent countless hours reading and researching both times but nothing is reassuring me or making me feel better. I think support from other moms that are or have gone through this may help?
Feel free to email me if you need some assistance with how to move forward from those type of events. It can sometimes be very hard to get over them.
Tara, my son just had his second frebile seizure (in two months) and is 20 months old. I am right there with you. I’m desperately searching for some type of peace of mind to make it through the next 5 years without constantly worrying about him and his fevers. The seizures are terrifying.
Phoebe’s seem to have stopped. She had two fevers without seizures so far. She is three now.
Have any moms out there experienced medication controlling febrile seziures?
Just fever reducer has worked for us.