Just another day if the life of a CMV baby...

So...a few weeks ago I noticed that Kaitlyn was doing this new "thing". It is kind of hard to explain, but she clenches up her fists, tightens her arms, and makes a "sour" looking face--all at the same time. It only lasts for a second or too, but she does this repeatedly, over and over, in clusters. She does it maybe 4-5 times each day, each cluster lasting for maybe 5 minutes.

It didn't seem normal to me. I started worrying that it was some sort of seizure. Kaitlyn is at high risk for developing seizures so I started researching what it might be. I researched infantile spasms, a rare but serious seizure disorder, and Kaitlyn fit the bill for a few of the symptoms. The cluster aspect for sure, and the fact that she often did it soon after she woke up. However, it did not look like a "typical" infantile spasm--often the arms and legs shoot out, like newborn startle reflex. In any case, I knew that what she was doing was just a little off and it worried me.

I finally decided to call her neurologist. I left him a message saying that I was worried about seizures but didn't describe them. I assumed that he would call back and then I would tell him what was going on and he would be able to tell me if she needed to be seen. Instead, I got a call saying that she needed to come in for an EEG in two weeks. It wasn't worth risking it--if there was a chance it was seizures we needed to know.

Kaitlyn had her EEG today. It was not the funnest thing I've ever done, but it wasn't too horrible. Really, it deserves a post of its own so stay tuned. After it was finished, I went down to the specialty clinic to meet up with the doctor and get the results. I first talked with a nurse practitioner and I described what was going on. I told her that I was also thinking that it might be a bad case of silent reflux (reflux without the spitting up) if it wasn't seizures. I also gave her a video I had taken of Kaitlyn having one of her "episodes."

She took the video and went out to watch it with the neuro. They both came back and and told me that she is NOT having seizures. They aren't positive what she is doing when she does her deal, but it is not a seizure. It could be caused by reflux, we are going to follow up with her pediatrician, or it could just be a Kaitlyn thing. The doctor told me that he recently attended a seminar about this very thing. Babies, around 8-9 months, will sometimes start doing a repetitive action over and over again. It is different for different kids, doesn't happen for all kids, and is generally something that they outgrow. No one knows why they do this. It isn't a seizure, it doesn't indicate autism (repetitive behaviors at older ages can), and is NORMAL. Emphasis on NORMAL. It is actually a good sign--she is developing like a normal baby. I had also brought up the fact that she has been waking up a lot at night and again they told me that this is a very normal, healthy thing for an 8 month old to do. Basically, Kaitlyn is waking up and is scared and wonders where we are. It shows that her social development is right on track.

The nurse practitioner told me that Kaitlyn is doing amazing for a baby with CMV. A living, breathing miracle. I tried to feel silly that I put my baby though an EEG for such a normal thing, but really, I don't. We just don't take chances with her. And really, I have never been so happy to be so wrong in my entire life. Kaitlyn could still develop seizures as she grows, but for now, she is fine. Fine and happy and seizure free.