The Nightmare Begins

Rayleigh is a wonderful baby girl! Very normal. That's the one thing I want people to get about epilepsy more than anything. Her first few weeks home were amazing! Just trying to get the hang of being new parents and everything about her excited us - when she'd open her eyes and look around, make little oohs and aaahs, use her neck strength so early on and even her sweet little baby cry.

We had a 2 wk visit with the pediatrician and she asked if we had any concerns after doing her well-baby check and we described these little jerky movements she would make for a few seconds and then go on about whatever she was doing. The pediatrician told us that this sounds just like a baby thing that a lot of babies go through their first few weeks out of the womb just adjusting to the new world. It wasn't until 6 wks old that we started really noticing them as an issue. My sister-in-law is a nurse and saw one of her "fits" first hand and said to us that it looks like a seizure. I had used this word to describe the "fit" to my husband before so it was haunting to hear it again from someone more knowledgable.

That is when the research began. We had a 6 wk well-baby visit with the pediatrician that week so knew we needed to bring it up with her first thing. We were online reading mommy-blogs, forums, medical sites and infant epilepsy research on several other sites. My husband and I did more research on epilepsy for our daugther than we did for any school assignment ever. In a few of the forums, I saw that the parents would take a video of the episode to the doctor which proves more helpful than describing. So I began using my iPhone to video one each time I was able. She was having these fits about 3-4 times a day at this point. Always the same, she would be waking up or falling asleep and then she'd open her eyes, turn to the right, look the right, lock up, turn red (sometimes) and then after a few seconds locked up she would begin to jerk her arms and legs, smack her lips and blink her eyes. She would breathe the entire time. When the jerking ended she would be exhausted and go right to sleep. They lasted about 40-50 seconds at this time.

So at the well-baby visit we told our pediatrician that we think Rayleigh is having seizures and showed her the video. She said that this could be a "baby thing" - her neuro system developing or it could be more serious. She then send in an order for us to have an EEG done ASAP. ASAP was almost 2 wks later, the next available time.

The EEG was done at 8 in the morning. We were waiting for them to come get us for the EEG in this small little waiting room. We were the only ones in there at the time, not even someone at the desk. Then, Rayleigh has one of her "fits" right there in the waiting room. Not more than 20 minutes later the nurse comes to get us. She says that only one of us can go back to the room with Rayleigh and then she'll need to sleep during the first part of the test. She's already exhausted from lack of sleep the night before and from the seizure she just had but I opt to go back with her so I can BF her to soothe her to sleep if necessary. My husband stays in the waiting room and I take Rayleigh back to a small room, swaddle her up and lay on the bed with her. She falls right to sleep and the EEG technician begins putting the little receptors all over her head and a couple on her chest. The first 10 minutes or so is just us in the dark room while Rayleigh sleeps, the technician outside of the room watching from a computer. Rayleigh wakes up slightly a couple times but I get her back to sleep quickly. After a few minutes the technician comes back in and says that the strobe light part will begin, it will go on 4 times for about 30 seconds each, getting quicking each time. So she leaves the room again and the lights begin. Rayleigh sleeps right through it. The technician comes back in and says we're all done. Normally they finish with about 5 minutes of the baby awake but she said she got what they needed from the couple of times she woke up during the first part.

We get a call later that week that the EEG came back normal. We were sooo relieved!

Our pediatrician had decided not to have the 6 wk shots given to Rayleigh until we had the EEG done. So we call the pediatrician and let them know the news so we can schedule her shots but the pediatrician feels we should get more answers first. So she refers us to Dr. Coleman and that's when we start hearing what we need to hear........