On yet another roller coaster!

There’s nothing more disconcerting than sitting in a dark living room and hearing your 13 year old daughter in the bedroom next to you moaning. As soon as I heard her, I knew… she was having a seizure.



October 2, 2006, 4 ½ years ago we found her on the floor after falling out of bed (that’s how we knew she was having it back then, her room was above ours). She was thrashing about, and moaning, and at on point, foaming a little. She was very very disoriented, and it took quite a while to bring her out of it. That morning we called 911, and the ambulance came and took her in to the hospital. She was put on meds, and seemed to be controlled.


Looking back before that day, I could tell the doctors about other episodes that she had had, so we knew that hadn’t been the first one, just the first that we actually saw. She would wake up and come downstairs crying for no reason, and very disoriented. I thought then that maybe she was having nightmares and sent her back to bed.


About two years ago, the doctor decided to run some tests (flashing lights, etc) to see if anything triggered another one. She hadn’t had one since being on the meds, so he thought maybe she had outgrown it. She decided that she would like to try coming off of the meds and see what happens.


The first time anyone noticed anything was while we were in Ukraine. She woke up several mornings with sore spots (from biting the insides of her cheeks & tongue). My mom told John when he got home about it, and we made her an appointment with the neurologist. When it was time for the appointment, she didn’t want to keep it because she was insistent that she was fine. I relented but made her promise that if she felt like she needed it, she would let me know. I didn’t think much more about it.


Until this morning. When I heard her, I sent John in to check on her, Olivia was already up, no doubt having been awakened by Kati’s thrashing (they have bunk beds) but not really knowing what was going on(she was a tiny baby when it happened before). Olivia didn’t know to tell me when she came out though. John went in, and I followed after I got out from under the two little ones (they were on my lap in the recliner snuggling).


She was unresponsive, moaning, thrashing around (not wildly, just agitated), we tried to get her to turn over, and she fought us. She kept trying to get away from us. Once she finally settled down, I stayed with her, periodically asking her who I was. She finally answered, and told me who John was. She still couldn’t tell me who she was though(she kept saying “coffee” or “Melissa” LOL). Once she could I explained what happened, and asked her how she felt, etc. She had a headache, and had bitten her tongue pretty bad.


John took her to the ER to have her checked out. Preliminary tests are all fine. They want us to see our family doc, and referred us to Ia City for follow up with a Ped. Neurologist since the only one we had in town is no longer here. They also put her back on meds. She’s resting now.


Poor kid. She’s disappointed I think more than anything. One of the reasons that she wanted to try to go without the meds is because she has to be med free for 2 yrs before they will let her get her driver’s license. I’m not sure what the rule is if they can “prove” that they are nocturnal seizures only. I guess we’ll see…