Bummed Mye and I had to miss Cousin Captain K's birthday party on March 11. :( Heard it was a blast.
Since I was still recovering from our drive back from Mexico, and Sey was still recovering from an ear infection, I decided that the girls and I would stay home from church that morning, too.
A little before noon, Mye complained that the back of her head hurt. I told her to go rest on the couch. I checked on her a few minutes later and saw the tail end of a seizure. She came out of the seizure on her own rather quickly, and I was able to get some Ibuprofen down her around 12:15. Temp 102.6. I let Mason know, and he came home. I had him go to the store to get me some more IBU and Tylenol so I could make sure I had enough for a looooong day.
Mye was exhausted so she continued to rest on the couch. I kept busy, but checked on her often. At 12:44 she was seizing again. I grabbed the video camera and started shooting. Her left arm and leg were stiff and her right side was flaccid. Her eyes were twitching and her mouth chewing. I gave her 5mg of her rescue med at 12:46. By 12:48 her right arm was now twitching and her right hand was making pinching movements but her left side was flaccid. Her mouth grimaced to the right. I had to give her another dose of the rescue med at 12:51. The seizure continued for another five minutes. I panicked! She should have been out of the seizure by now! I had Sey grab my purse. I gathered Mye up in my arms, called Mason at the same time, and rushed out the door to get her to the hospital. Mason pulled up into the driveway just as we were rushing out the door! He found a crying, frantic wife, unconscious daughter, and a helpful little girl. He open the car door for me.
As I plopped Mye in to her car seat, the seizure stopped.
I collapsed in relief.
We ended up taking her to urgent care just to be on the safe side since we used up her rescue medication, and no pharmacy in town had any. (I do have a 7.5mg dose of Sey's old rescue med that I have hoarded in case of an extreme emergency). The Doc at first wanted me to take her to the hospital because she looked like she might go into another seizure. Her eyes were unfocused and looking to the right. Thankfully, he decided to just keep her there until she was stable. Her temp continued to be around 102 so they gave her some rectal Tylenol. The temp slowly come down and then we were able to go home... and May and Sey were able to go to Captain K's party anyway. :)
Monday I ended up getting sick. So the rest of the week was kind of a blur.
We were able to get one dose of the rescue medication(diastat) on Tuesday. Our insurance helps us pay for only one dose a month. It is pretty spendy stuff and apparently pharmacies do not like to keep it around. I try to keep at least two doses on hand. As you can see, we sometimes need 2 doses to bring her out.
Friday night(16th) Myelle was up every 1-2 hours with an earache. By morning her eardrum had popped. We took her in to urgent care where they found that she had a double ear infection. I gave her the first dose of her new antibiotic around noon. She refused lunch. I laid her down for a nap around 1. I laid on my bed listening to the monitor waiting for 1:30 when she was due for some more IBU. Right at 1:30 I heard some raspy breathing. Oh, No! I ran in to her bedroom where I found her unconscious, lying in vomit. I do not know how long her seizure was, but she was out of it at that time. She was in the post ictal phase. She did not have another one, thankfully, and is doing quite well!
(Other than complaining of some mysterious foot pain the past two nights. ;)
April 25, Mye has an appointment with her neurologist. Please pray for wisdom.
I believe, the daily medication that she is on (keppra) is affecting her emotionally. Since she was put on this med, she would have an episode of extreme screaming and fit throwing maybe once a month. We figured we could deal with that. The past month it has been more often. She will have a FIT once every two or three days. If she does not get her way in some issue that she thinks is important, she shuts down and WILL NOT obey.
Mye has only had febrile seizures on keppra. Mye was put on keppra because she was having some non fever related seizures, very long seizures(up to an hour), and focal(one sided) seizures. So theoretically it has prevented non fever related seizures. But no med can really stop febrile seizures. Is it worth it to keep her on keppra? Sigh... Other meds that the doc has suggested have side effects that freak me out.
I would prefer no medication.
Actually, I would prefer no seizures. ;)
Father, please heal our little one.