I have mixed feelings about putting a video of it here for all to see, but maybe someone can give us some direction, and I want my family to see what is happening.
There have been no changes or emotional reasons to trigger this sort of behavior. I do not think it is anxiety. He does this at 2 am when he is awake just long enough to go to the bathroom. He does it when he is running around outside. He does it when he is calmly listening to a story. The last part of the video shows him twitching his fingers the moment he fell asleep. It seems neurological to me.
Adam very recently became strangely obsessed with making sure his blanket is perfectly smooth, with no wrinkles in it, which seemed odd to us, and these strange movements all the sudden had us worried. Wes found some information online that concerned us. I am recovering from strep, and there is a condition in which strep attacks the brain instead of the throat. It causes a rapid onset of tics and obsessive-compulsive behavior. The condition is called PANDAS. You can click here to read about it.
I called the after-hours number at our pediatrician's office & a nurse called back. She didn't think we needed to scare him with a trip to the ER or risk exposing him to the viruses floating around there. She suggested we come into the office Wed.
Our Wed. appt. was at 11am. Adam's quick swab for strep came back negative, and his repetitive movements were still going strong. The doctor called a neurologist who said we needed to go to the ER and that he'd meet us there. They thought that it was caused by an infection targeting the brain. The pediatrician told us that we could expect blood work and possibly a spinal tap. We were so afraid. I was shaking as I sent out texts to let people know what was going on.
The tics subsided some once we were in the ER. Seven different doctors came to look at him throughout the day. The attending finally came and immediately said that he didn't see anything that made him think it was caused by an infection. He didn't want to do any invasive tests and told us it could be tics, obsessive-compulsive disorder, or stereotypic (repetitive) behavior. It might go away. It might not. We are to meet with him again in 2 months if it hasn't gone away. We can cancel the appt. if it does go away and we are to come in sooner if it worsens.
The pediatrician called us back as we were packing up to be discharged, but she didn't sound so sure of the neurologist's assessment. As I explained what happened, she kept saying, "Interesting." Then she told me we could come back to the office and she'd do the blood work and that she'd refer us to someone for a second opinion if we wanted. This just makes me think it isn't a good idea to sit around and wait two months to see what happens.
We are going in at 1 pm today to get blood work done. Levi is with Grams and Grandpa enjoying some special time with them. I will post an update here whenever I know more. Please pray that we can figure out what is going on with our sweetheart.