When The Seizures Wouldn’t Stop Part I

About a week ago, I was stressed over a cold my daughter was fighting. I never imagined how I’d take the sleep deprivation and crying over what turned out to be one of the scariest moments I’ve had since being a mom.

Our baby girl who is just 15 months old was diagnosed with Febrile Seizures earlier in the month. I immersed myself in the literature about the condition and set my mind at ease as best as possible. Long story short, if she has a fever, we get her cooled down as fast as possible but be prepared for a seizure. Nothing could prepare us to what happened last Friday morning.

Her fever had not subsided as we hoped and last Thursday short seizures kept occurring. We visited our little boo’s regular doctor and she was prescribed a medication to stop the seizures or at least slow them down. We were scheduled for an EEG the next day. That test would show us the kind of seizures she was having and if she was epileptic.

She played the night before the test but by Friday morning the seizures were back with a vengeance. We have come to know the cry and screams she lets out after each seizure. It’s distinct. Moms know the sounds of their babies.

At 5 AM, I heard that sound come over her monitor. I ran into her room only to see her little 21 lb. body in her pink pajamas convulsing helplessly in her crib. Her temperature spiked and she was burning up. In between the convulsions, I stripped her down and gave her meds to get the fever down. I ran her outside to cool her down and applied cold clothes to her hot body.

My hubby started to call her doctor’s exchange but the seizures kept coming one after the other. Longer, harder and more severe. I sobbed. He sobbed. We were helpless. He called 9-1-1.

It took the paramedics and firemen about  four minutes to get to the house. It was the longest four minutes of our lives. By the time they arrived, her body temperature came down and the seizures stopped.

At the hospital, they completed a CT Scan, EEG and spinal tap along with a lot of blood work. It was the most excruciating 5 hours. Our baby scared and her parents petrified.

By that evening, we knew the seizures were caused by high fever and she was not likely to have epilepsy. The mystery for us became…  Why the fever? Why had the fever and illness lasted so long?

We were admitted that day to find out what our little boo was fighting.

 

 

 

 

20 thoughts on “When The Seizures Wouldn’t Stop Part I

  1. Jen says:

    We had a similar experience when my oldest son was 8 months old. I remember how scary the night was…he had to be airlifted to a different hospital when the ER docs couldn’t stop the seizures. I’m glad to know you’re home and she’s doing better now!

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    • Stephanie says:

      I’m so sorry you experienced it, too. So very scary. Sounds like he grew out of them? Glad we are home as well… it was a long few days!

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  2. Cynthia Wilson James says:

    A friend sent me your post because the same thing happened to my daughter Jewel at 2-years old. I prayed all the way to the hospital. We (my husband and I) had a great emergency room doctor who explained that this (febrile seizures) usually runs in families and usually happens when the child is 2 years old or under. I did research and sure enough my mom told me that this happened to my older sister as a child! The doctor also said the most children “grow” out of it by age 6. This past January Jewel turned 7 and I was so thankful! I agree with you about consulting your physician if a mom wants to know more. I’m a first-time mom over 40 who conceived naturally and “age” cannot prepare a woman for the remarkable journeys of motherhood! I invite you to visit my blog: http://www.inseasonmomreflections.blogspot.com

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    • Stephanie says:

      It is a remarkable journey at any age! Day by day it brings something new and different 🙂 So glad Jewel hit the magical age of 7!

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  3. Barbara Mascareno-Shaw says:

    I completely understand the frustration and desperation to do something but you can’t. There’s nothing more scary than have one of your children go through pain and suffering. I hope that your little girl is doing better.
    A Bloggy Moms follower.

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    • Stephanie says:

      Thank you for the follow! That is truly to hard part… when you want to do so much and you can’t. So I/we just tried to comfort her as best as possible. She is doing better 🙂

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  4. M Gannon says:

    My daughter had her first seizure at 10 months. It was over 20 minutes and she ended up in the hospital for several days. They told me it was a febrile seizure and shouldn’t worry about it. Now, 10 months later, we are at seizure number 5. Everytime it is so scarry. Her seizure are always over 10 minutes, the one on Wednesday over 20 minutes. She always turns blue and seems to stop breathing. We finally were able to tape the last seizure and showed it to the neurologist this morning. He was able to tell that the seizure was focal, meaning it might only affects one side of the brain. She starres to the left when these seizures happens and even after 5 seizures I wasn’t able to pick up this detail if it wasn’t for the tape. We are planning to do an MRI and another EEG to exclude problems in the brain. I would really recommend taping it. Did they give you daily anti-convulsant meds? Two neurologist told us that they won’t put her on meds until she has an unprovoked seizure. All her seizures were fever related. For now we just use rectal valium to stop the seizure but she is not on any meds on a daily basis. I am interested to know if your daughter is. I know your pain. This is my fifth and I still cry like a baby…and want to vomit and scream. I am now so paranoid about illnesses. I hope with time I relax some. Sorry just typing away…

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    • Stephanie says:

      I am so, so sorry. It is so scary… hers were not as severe as your baby’s seizures but were triggered by the fevers also. We have her on daily medication and she has not had a high fever since April, so we have not seen a seizure since then. We are weaning her from the meds though but have to monitor for fever/seizures as time moves on. We do have the rectal medication for emergency as well. We have not had to use it at this point. While I cannot give medical advice, of course, I will tell you we did the CT scan, EEG and spinal tap–the tap was to confirm if she had an infection. I just keep asking a lot of questions and have another follow-up with her doctor this month. I share being paranoid about illness, too. I practice taking it one day at a time and sometimes, one hour at a time. Take care of you, too because we stress and can run ourselves down that way as well. If you can come back and share how the tests go, I’d love to hear more or you can email me separately if you are more comfortable that way. I am sending you good thoughts and prayers to you and your precious baby…

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      • M GAnnon says:

        Thank you for replying and for your prayers.

        She did have a CT, EEG and spinal tap. All normal. What I don’t like is that every neurologist has a different opinion of anti convulsant meds. I had doc telling me to put her on meds immediately and then I decided to wait and see better neurologists and two of them told me that they don’t prescribe daily anti convulsant for provoked seizures due to the side effects of the meds. So now I would like to put her on meds on one side because I don’t want to spend my life scared of colds and flus, but on the other I am afraid how the anti convulsants affect her. So I am happy to hear that your baby was on anti convulsant and seems to be fine. Was she on Keppra?

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      • Stephanie says:

        Yes, Keppra. But we are in the process of weaning her because we don’t want her on meds due to potential side effects and also since she experienced seizures due to the fever. She was prescribed it because the seizures were constant and not stopping during her illness. So, it sounds like our neurologist had the same approach as your first one. Since we are heading into summer, I am at some ease hoping for no illness (fever) but we are going to monitor during winter and if she needs to go back on (if she has seizures again due to fever), then we will most likely opt for that…but of course after consulting with her doctor. After researching, talking with the doctors and other moms with children who have this, it sounds like around 4-5 years old is the magical age it may subside. I know that is tough to think of it in years, for me, too. Here’s a link you may have seen this already but it breaks it all down. http://www.ninds.nih.gov/disorders/febrile_seizures/detail_febrile_seizures.htm The decision regarding the medication was ultimately left to me and my hubby with our doctors guidance and support.

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      • M GAnnon says:

        Ok, now I feel better that I know someone else was on Keppra and did fine. I will come back and check your comments and make sure I give an update on my daughter’s MRI and EEG. I read a lot of literature on this. It seems to be clear that parents shouldn’t worry about simple febrile seizures. However, it is not clear with complex febrile seizures. They say that we should investigate more. Thank you for starting this blog. It really helps.

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      • Stephanie says:

        I’m so glad you feel better. I feel better chatting with you, too! Yes, it was Keppra. And I don’t recall if I mentioned the diagnosis was “complex” for her as well. Good luck to you and look forward to hearing how the test comes out. Sending good, positive thoughts to you and your family 🙂

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      • M GAnnon says:

        Got EEG results. At first the nurse called to say the EEG is normal. However, I asked to get a copy of the report and in the report it shows that there were some spiky vertex waves frontally displaced. The neurologist proceded to say that those MIGHT be a variation of a normal EEG for my daughter’s age. So what does that mean? They assume is normal and if in the future she has epilepsy then that means it was not normal :). Don’t you love doctors? MRI scheduled on the 7h. Will update.

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      • Stephanie says:

        Thank you for the update! I was thinking about you the other day and then your comment popped in.. Well, hopefully, the MRI will tell you more and you can get some ease or prognosis. We just made it through a cold with slight fever. No seizures. Have to admit, I was stressing a bit but trying not to and we made it through 🙂 Hang in there! Still sending good thoughts to you and your family!

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