The Beginning

We went on vacation the 2nd week of Aug 2007 and everything was fine. Photos from that trip to Monticello and Virginia Beach are our last photos of life before Epilepsy. Aug 26 we woke up, our son had spent the night with his Grandparents, my husband was in the kitchen and I was watching our girl run back and forth from one room to the other. I thought she looked a little unsteadier than usual but when she sat down in front of the TV I thought nothing of it. It looked like she was biting her toes and I called her name and she didn't respond at all. I jumped up to pick her up and she was limp like a rag doll. At first I thought she had maybe gotten hold of something I hadn't seen on the train table and stuck my finger in her throat to see if she was choking. She didn't even respond to that, no gagging or anything. My husband grabbed her and ran out the door with her, but before he did I heard her take a big breath. She never seemed to have stopped breathing, maybe just breathing shallower than ususal. She didn't turn blue or anythign. Our neighbor lady is an RN in the emergency room of a local hospital, and that's where my husband was headed. Of course it was early and she wasn't awake yet and by the time he got back there, our daughter was alert and patting him of the back like "what are we doing out here?". It had been a long time since she'd ate so I gave her juice and fed her and then thought, should I take her to ER? Chances are since they didn't see the seizure they won't be able to tell me anything. Well I himmed and hawed about it until afternoon then called the pediatrician on call and she told me to go ahead and take her to ER (why does this stuff always happen on a weekend!?) Just a note, if your child ever has a suspected seizure take them to ER before you feed them anything, one thing they'll want to check is blood sugar. We took her to ER, they drew blood and did a CT scan, all was fine. We made an appointment with our pediatrician and when we met with her she said to keep an eye on her and referred us to a pediatric neurologist. We met with him within a week. He said she needed an EEG, that this seizure was probably an absence seizure. I asked if it was something that needed to be done immediately and he said no. He also told us that if we wanted we could have the EEG done at a hospital about 40 minutes from our house instead of going to his main office at a pediatric hospital over an hour from us. She was supposed to be sleepy when we took her for the EEG and a closer hospital made more sense. At that visit he told me to wait for her orders then came out and told me he didn't think I'd need them, his office took care of all that anyways. So when I called to schedule her EEG at this closer hospital, they said they needed the orders sent. I called his office to have them sent and it took several phone calls! And about a week for them to get the orders sent! When the hospital called to schedule, they asked the childs age and I told them 18 months and they put me on hold while they checked to see if they did EEG's on kids that young. First sign of what was to come! We scheduled the EEG for the next week, my husband took off work and we kept her sleepy. The drive up was horrible, you strap a sleepy kid into a carseat and guess what? They want to go to sleep! Big surprise I know!!! She cried so hard she almost made herself throw up, but we kept her awake. We got to the hospital and the EEG techs were very nice, but obviosly had little experience with a child so young. We bundled her to get the electrodes on her head and the were trying to use the vaseline like paste instead of the glue I now know should be used. So everytime she'd turn her head the electrode would slide out of place and the last straw was when it almost went right in her eye. The tech gave up and called the Dr to see if she could sedate her slightly to put the electrodes on. The answer was no of course which I was glad of. By this time we were seriously stressed out and after they gave up my daughter fell asleep, like she was supposed to. We were told to call the Dr's office and make an appointment for an EEG at his hospital. Well on the way home, my husband was upset and said he thought the EEG attempt was more stressful on her than the seizure! So we talked to her pediatrician and told her how we felt and she said keep an eye on her if she had another seizure call the neurologist, but honestly if she didn't have another seizure within 6 months they probably wouldn't bother with an EEG. Well I started noticing some odd movement in my daughter. My husband didn't believe me because he never saw them. She would stop before he got off work in the evening. But I kept seeing her slightly nod her head several times a day. It kept on and on until finally I told my husband I was tired of seeing her do this and was calling to make an appointment with the neurologist again to see if this is another type of seizure or what was going on. The pediatrician advised me to try to get her doing the behavior on video. My husband at some point did see what I saw, but honestly they were so slight I could be at the store talking to someone and she'd be in the cart and I'd see it but no one else would notice. She did seem to have more after she woke or got tired, I did notice that. I'm just glad I'm a stay at home mom and noticed something was going on. When a friend saw her seizure once, she said "how did you ever pick up on that!". All mom's know their kids though, and know when somethings not right.