In mid June, two weeks prior to her first birthday, we started to notice a strange head shaking behavior that Molly was doing. It happened, or we noticed it, usually while we were at the table eating a meal, and she was buckled into her booster seat. She would be acting totally normally and then suddenly, her head would shake from side to side and her eyes would sort of roll back. Then it would stop and she would act as if nothing had happened. There were days when she would never do it, and days when it would seem to happen endlessly during meals. As time went on the behavior seeped into more and more of her day beyond the table. Here is a very short video clip example of the head movement here.
As this behavior continued and we took note of it more and more we started to film it and called our pediatrician. He was concerned about its seemingly involuntary nature as well as how often it was happening. Whenever you can provide video it means it is happening enough that you can easily capture it. We had a MRI scheduled for 2 and a half weeks away and would meet with neurologists at that time. This behavior continued and continued and when my emotions boiled over we decided we had to take action sooner than waiting for that appointment. Our pediatrician told us that this head shaking was either absolutely nothing but some silly behavioral thing she latched on to doing, or else something very serious, such as a mass in her brain or epilepsy. When I couldn't take the waiting any longer our pediatrician suggested we get a cat scan to rule out a mass, and the easiest way would be just to go to the ER at Boston Children's (since we were close in Scituate). We met with a team of neurologists there and she checked out very healthy, but they agreed upon seeing the video that it was strange behavior, and nothing that they had seen before. She did not exhibit signs of having a mass, such as pressure behind the eyes or swelling. She had no loss of motor skills and no vomiting (all signs we had to look out for). We had doctors coming in non stop to look at the video, "I hear you have an interesting video, we're all taking bets as to what this is, etc" She had an EEG done and it came back normal, so we were able to rule out seizures. They basically said we had to wait for the MRI and go from there. We waited ten more days and finally had the MRI. It was an emotional day for me as I was very anxious and the build up was tremendous. We got there around 7:45am, Molly was not allowed to eat anything since her bottle the night before. I thought this was going to be a nightmare as she often wakes up asking for her bottle. But she was relatively good about it and easily distracted by the scene at the hospital. She went back to the MRI area and had her vitals done and we did some paperwork. Picture here...
When it was time I took her back and we were unable to find a vein easily for her IV because she was resisting and wiggling. So we had to put her to sleep using gas and then find a vein for the IV to keep her sedated. As the doctor came from behind with the gas mask, I held her hands and watched her fall asleep. It was tough to take, and with my emotions brimming over anyways, it was not long before I was crying. Once asleep I laid her on the MRI table, gave her a kiss, and had to leave. We had to wait about an hour and 15 minutes and they called us back to recovery. She was loopy but just waking up. I held her and we stayed there to be monitored for about 45 minutes. She ate some crackers and drank some juice and then we were cleared to go home. As I was alone to drive the two hours back to Scituate, I turned her seat around so I could see her easily and she slept the whole way. We had to watch her carefully as she was working the sedation drugs out of her system that day. She was not as coordinated and more sleepy. It was a difficult day waiting for the results. Around 5pm we got the news that her MRI was normal. The biggest relief I have had in my time as a parent! So now we are in a wait and see mode. The biggest life threatening issues have been ruled out and chances are that this is just a behavioral thing she is doing. We will watch her carefully, meet with neurologists in the Fall and go from there. We feel very fortunate to come out of the Children's hospitals in Boston and Hartford with nothing but good news. You count your blessings when you leave those places. These are hard things to go through with your children but we have been lucky to come out on the winning end this time around. Thank God.
