Febrile Seizures My Daugther's Story
My daughter is the oldest of my three children. She is also the one I worry about the most all the time and it started when she was only 8 months old. I was newly pregnant with our second child and had a baby that was sick for the very first time. She had a fever of 100.1 degrees Fahrenheit. Not a real bad fever and the Tylenol I was giving her was working perfectly. We put her in her bed and she snuggled in for the night feeling a bit better with her medicine working well to bring her comfort. Around 1:30 in the morning I hear a shrill scream from her room. I stumble in and see her sad little face peering over the rail. My husband stumbles behind me and I tell him to get the thermometer and her medicine. As I cuddle her close he takes her temperature. I laid her down and started to change her diaper as my husband gave her the medicine. She stopped moving as started to stare. Her head started to tick side to side and her arms came up. It was dark in the room and my husband said, “She doesn’t like the taste of this medicine.” I looked at her and without a care said, “She is having a seizure”, and just started to walk out of her room, like my brain couldn’t truly grasp the gravity of what was happening to my baby. I panicked as I walked out the door. My first instinct as it always is was to call my mother, why I do not know, you are all saying GO TO THE HOSPITAL. That is what she said also of course.
Wearing my pajamas, I was missing shoes this will be a repeat offense for me at the hospital, I ran with my daughter still seizing down the stairs half naked with her diaper half on to my husband’s truck. He drove like a mad man to the hospital, which thankfully we only live minutes away, but on the way there something terrifying, happened. She stopped breathing, and turned blue (in case you were wondering I am crying like a baby as I write this). I started screaming at my husband to hurry. We pulled in and I raved into the ER right past everyone screaming as I laid her in a bed what was happening. People shoved me out of the way and put oxygen on my daughter, and stabilized her. We sat in the ER for ½ hour when she started again, but this one only lasted 30 seconds instead of 3 minutes. I panicked, everyone came running, and then the room was calm because it stopped. The doctor came and spoke to me telling me it was no big deal she will grow out of these by the time she is 6 years old. WHAT? 6 YEARS OF THIS, how is that really comforting right now. Then I thought at least this is pretty rare and it will be something that is not forever (and by then I mean like a week later really). We stayed at the hospital for a few hours and were sent home and told to see her doctor.
The doctor said the same thing that she would outgrow them and that these usually do not happen often. They were wrong she had another a month later with another low grade fever. This one was longer, 5 minutes. We got to hospital and again I was panicked. A few months later another seizure and then a doctor switch because we needed someone with more experience in this area. The new doctor sent our now 1 year old to the Geisinger Hospital in Danville to be seen by a neurologist. This doctor said she was having more than the average child but he still believed they were febrile seizures and no farther treatment was necessary and that she did not need to be taken to the hospital anymore because they were giving us “life-saving” medication. This medication was a rectal gel to be given when she had a seizure lasting more than 3 minutes. She continued to have multiple seizures with low grade fevers. Back to the neurologist and he changed his mind about waiting to give the medication to our daughter. When she seized she was to be given the medicine right away. This made it hard to have anyone watch her for my husband and I to get away because most people were too afraid to be alone with her. I worked at the time, lucky for me I had the world’s best sitter, and she was nervous but willing to continue to babysit.
Continuing the process...
At around 2 years my baby had endured 16 seizures. They progressed from 3 minutes to 15 minutes long. From no vomit to aspirating during her seizure. She had 2 EEGs both of which said possible epileptic seizure activity but could not confirm what was going on with her. We switched her neurologist again. The new doctor wanted her to be on medication, I was not willing to do so at the time because he said it would help calm her down because she was too precocious (she is 2 and smart what is wrong with that?). He also said to me, “I am not saying you’re a bad mother, but why haven’t you been doing anything about this?” I thought I HAVE BEEN!? I HAVE BEEN SCARED TO DEATH, I have followed the other doctor’s orders, I talked to my aunt that is a doctor, and I researched on the internet at least once a day what to do. What else was I supposed to do, I am not a doctor, I am a scared mother with a daughter that keeps seizing to the point were if she stares I panic. On to the next doctor, he confirmed we needed anti-seizure medication because he was concerned that these seizures were not febrile at this point but was unsure because of her age. We decided to start Keppra. The medication worked well for her. Her mood did change though she became very angry and upset when she was tired. She became depressed at first saying she was sad and would just cry. She was 2 years old telling me she was so sad and she just didn’t know why (ok I am crying again). I was heartbroken for her, but then everything evened out about 2 month into the medication.
She is now 4 years old and perfectly normal; aside from she takes medication 2 times a day. She has not had even one seizure since she started the medication. She knows why she needs the medicine so she has no issue in taking it, and we hope this following spring when she is 5 that she will be taken off the medication. She is a miracle to me watching her go into the doctor throw her arm out for blood work (as long as she is promised a donut) and show little to no fear. She has come far, we have come far, and I am thankful everyday that this is her issue. That she will outgrow this. That she will be ok, because I know that some are not so lucky. I am in awe at her strength and her outgoing personality having been poked and prodded so much. Amazing my daughter, truly amazing.