I'm posting this because we've had so many people asking how Bennett is doing. Many people heard bit and pieces of what's been going on with Bennett the past two months, and I just thought I would write this to get everyone up to speed. Before getting too worried and reading this, you should know that at this point, we expect nothing harmful to be going on with Bennett. :)
About six weeks ago now, we noticed Bennett would involuntarily "shake" or "shiver". It came on quickly and happened frequently at first. However, it didn't seem to bother Bennett or even interrupt his play. He would just have a "shiver" run up his upper body, like he touched something cold, and then keep on playing. We knew it wasn't febrile seizures because he was not running a temperature or acting unlike himself.
We almost rushed into the ER the first weekend we noticed. After some thought, we decided to wait on the ER - fearing unnecessary tests and trauma for Bennett - and waited to see our pediatrician. While we waited for our appointment, the shivers became more sporadic and we got less worried, assuming it was just a "tick" that Bennett would soon grow out of. We mostly noticed his shivers when he was upset or tired. We tried not to do too much reading or research on our own, but some of what we read suggested an infantile tick - something the doctor would see and send us home with a clean bill of health for Bennett.
When our appointment came around, John and I both expected to be sent away with "nothing to worry about, its normal for developing infants" or something like that. We were able to catch a couple episodes on video to show our doctor. After seeing the video, our pediatrician was concerned and said we should get a neuro consult. That made us a little scared because we weren't expecting to have to have any further exploration of the issue. I was feeling a lot of guilt about the wait between discovering Bennett's shivers and the two weeks that passed until we could see the doctor. Dr. Gilmartin assured us, however, that we did the right thing by not taking him to the ER in this instance and by waiting and watching his symptoms carefully.
Now we had to wait a couple more weeks for our neuro consult, but we finally had our appointment last week. The head of the neurological department is the pediatric specialist, so we were in good hands. He was great with Bennett and after a complete history from us, he observed Bennett and played with him. Just as our pediatrician had assured us, Bennett is meeting all the developmental marks he should be for a nine month old, which rules out many serious disorders, etc. The neurologist told us he expects it is something called "shuddering attacks", which he sees in only about 2 or 3 children each year. Its a benign, neurological misfire in a young child's brain that usually disappears by the time they reach school age. Just to be sure there is nothing else of concern, he ordered an EEG for Bennett.
Luckily, we were able to have the EEG on Friday. We were happy not to have to wait any longer. The EEG was tough, but Bennett is such a little trooper. It was conducted in the sleep center at the hospital in a small room with a big chair that I sat in with Bennett. Bennett had 24 electrodes attached to his head to monitor brain activity. The process of attaching the electrodes was grueling: mark, scrub, glue, attach, dry with air gun, more glue, cover with gauze - for each electrode! It took a long time and I just had to hold Bennett down while he screamed the whole time. He was so exhausted after that, he ate a little and fell right asleep. Unfortunately, they needed to monitor both awake and asleep activity, so I had to wake Bennett up after only about 30 minutes of sleep. John arrived just before Bennett fell asleep and even got Bennett to smile:
Our little trooper!
We wait now for the results of the EEG, but truly expect his brain activity to come back normal - indicating no further tests or treatment necessary. We've had a surprising amount of peace through this whole ordeal, feeling your support and prayers. We know God is taking care of Bennett in whatever way he can. He's such a little blessing. We have a new respect for parents who watch their children deal with chronic illness, treatments, and testing. Its so hard to wait and watch and have faith.
I will certainly update everyone when we hear back on Bennett's EEG results! Thanks for your love and prayers! They have made all the difference for us, and for BENNETT!
