Milee has had 7 seizures to date. Of these seizures, 2 have been complex (lasting longer than 5 minutes). Her seizures always occur when she has a sudden spike in temperature. Her temp can go up just a degree but it is how quickly it goes up that causes them. Her little body cannot handle even that slight trauma. Each seizure came shortly after immunizations OR during an illness. I believe that she finds them scary, and I know for sure that they terrify me.
The dates of her seizures, symptoms before, during, and after, and what we did in response to the seizures are as follows:
April 22, 2012, 2 days after immunizations, Milee had a 25+ minutes seizure in which we called 911 and she was rushed to the hospital in an ambulance. It took 2 doses of anti-seizure medication to stop the seizure. I didn't know what was happening as I have never seen a seizure in real life, and the way she was twitching was unlike any seizure I'd seen on TV. You can read about this experience
here. They diagnosed her with an epileptic seizure and upper respiratory infection. Her illness became progressively worse following this seizure.
July 23, 2012, 4 days after immunizations, Milee randomly threw up on the way to our dentist appointment and then immediately fell asleep afterwards. While Jared was cleaning her up, she went limp for a few minutes and although she didn't twitch, this was her second seizure.
July 23, 2012, Milee had her third seizure while sleeping in her carseat and her daddy was putting together our new barbecue. At this point I decided it was time to take her to the emergency room. She was once again diagnosed with an upper respiratory infection but was finally diagnosed with Febrile Seizures. You can read about this experience
here.
November 19, 2012, Milee had a small, dry cough but otherwise was acting just fine. She went to bed that night wearing a yellow sleeper. At about midnight, Jared and I were just getting into bed and going to sleep when we heard Milee yell out three times. It was a terrified sounding yell. Jared ran in to check on her and was just about to just leave her when he decided to turn her over. It was then that he realized that she was seizing, her fourth. He brought her into our bathroom and we tried to comfort her. She had a 102.7 temperature. Her lips were turning blue and her face was white. This seizure lasted 10 minutes, and was her second complex seizure. After she stopped seizing her tummy was distended and she continually released air through her mouth. She then began crying/whining and did this for 45 minutes. I tried holding her and comforting her but nothing helped. She was still unresponsive and had not regained function of her body. After the 45 minutes, she woke confused as to where she was and who we were. She just looked around the room and cried for mommy even though I was right there. We tried to show her her room, and Ella, etc to help her to know where she was, but it didn't help. She then fell asleep in our bed and was later moved to her own room because she was moving too much. She slept in and was completely fine when she woke up in the morning.
November 19, 2012, at about 4pm with a 102.9 temperature Milee had her fifth seizure. It lasted 5 minutes or so and was accompanied with blue lips/face. We kept her medicated with ibuprofen and tylenol. Her small cough then turned into a hacking cough with crud in her lungs that resulted in several rough nights. She had 2-3 days of fever usually only at night.
After these last 2 seizures we decided it was time to have her seen by a neurologist. We made an appointment for November 29, 2012. The appointment went well. According to the doctor, she looked and acted completely on target with her age group. He said that he couldn't diagnose her with Febrile Seizures because it seemed that she was having partial seizures (part of the brain) and that Febrile Seizures were complete seizures (the whole brain). He suggested starting medication that day but I was nervous about side effects and instead agreed to having an EEG and having her emergency medication to use if she has a seizure lasting longer than 5 minutes.
On December 4, 2012, Milee had her EEG. They asked me to put her to bed an hour later than usual and get her up two hours earlier than usual so that she would be tired for this appointment. We put her to bed at 9 and I got her up at 5:45am. We watched Sesame Street until Daddy got up, then he let me get some sleep while he took over. Our neighbor had a playdate with Ella and her daughter, Katea, during the appointment.
The appointment was kind of stressful because parking was terrible at Primary Children's Medical Center so Jared dropped me off to go check Milee in, but then I had no reception in the hospital to tell him where I was and they called Milee back while she wasn't there yet. It ended up turning out okay. They had us lay her down and immediately starting putting some putty like stuff on her head followed by a sticky with a wire connected. It was a lot of wires, but they were pretty quick with doing it. They then shined strobe lights on her to see if that would induce a seizure, but she could have cared less and nothing happened. They then turned the lights off and left the room and we were asked to lay next to her and try and get her to take a nap. Milee doesn't go to sleep with us in the room so we tried leaving but she just cried. I then laid next to her and she eventually went to sleep. Afterwards they woke her up and cleaned her hair and little and we were free to go home. Here are some pictures:
This was after they hooked her up to all of the wires
This is while she was still sleeping, but they were removing the wires
Crazy hair afterwards!
We got to meet the Jazz coach and a male dancer who signed and gave Milee a basketball.
I waited a week to receive results on her EEG which were normal. They asked me to make a follow-up appointment in 6 months and that was the end of that...
December 26, 2012, Milee had her sixth seizure at about 1pm. I had just put her in her high chair, and she went into a seizure. It lasted about 5 min and included her right leg and left arm twitching. I had given her tylenol 35 min before this incident. We laid her on her right side which helped so much with her not swallowing her mucus and her color came back to her face a lot quicker. She slept for about 30 min afterwards and then was fine.
December 27, 2012, Milee had her seventh seizure. I had been keeping her medicated with ibuprofen and tylenol about every 2 hrs. It had been about 3 hrs since she was last medicated and I went in, checked her temp, and gave her some meds. Daddy got called in to work and I was worried she'd have another seizure so I was holding her and we were watching her dream lite, etc. I then checked her temp again and I thought the thermometer was broken because her temp went from 100-103 within minutes so I laid her in her bed and went downstairs and changed the batteries, I picked her up again and then it was still giving me all over temps so I went in and cleaned it with alcohol. When I went back into her room she had rolled onto her tummy and was having a seizure. It was about 12am. I called Jared and he talked me through it. I laid her on her right side but this time her entire body was twitching. I then held her until she regained consciousness. I had her sleep in just a diaper.
After a few days of combating her temperature with medication and using a humidifier, I decided that it was time to take her to the doc to make sure that she didn't have a bacterial infection. The doctor was concerned about the amount of seizures that she has had, and although she didn't have any outward indications that it was anything other than a virus, he sent us for blood tests and an x-ray. Both came back that it was just viral, however, he called the on call neurologist and talked to them and they called me to make an appointment. They made it for 2 months from then and I was very concerned because I felt like something needed to be done now. The nurse talked to me and said that he would have Milee's neurologist call me. He did and we decided that it was time to put her on medication. She is taking Keppra twice daily from now on. So far, we have had no side effects. This medication will not eliminate the seizures but will help heighten her threshold for having them. I hope she doesn't have anymore! The neurologist seems to think that her body is starting to like seizures and the medication is a good idea. The most common side effect to this medication is sleepiness and so far that hasn't been the case with her :). She has a follow-up appointment in 2 months with her primary doctor and a follow-up appointment with her neurologist in 6 months.
The pediatrician that saw us was not Milee's primary doctor, but he was very concerned and has since called me 4 times to make sure that the neurologist didn't just brush this under the rug and that Milee's fever broke and that she was doing better. This has impressed me so much that I am considering switching my girls Primary Doctor to him. I feel like Milee needs a doctor that will remember her and her history, especially if he is going to do the medication follow-ups.
