Ok. First, before you read this, don’t get mad at us for not telling you what was going on. We don’t tell everyone everything, and it was important to us to have some answers before we freaked out the cavalry.
Second, we’ll probably get more answers as time goes on, but for now this will do.
Last Friday, I noticed Ronan exhibiting some very strange behavior. He would shrug while walking around, throwing his head down and cranking his shoulder up and smashing them together almost like you would if your earlobe was itchy and you didn’t have a free hand to scratch. Only, he’d do it two or three times in a row. At first, I thought “How cute! Ronan has learned how to shrug!”
Until he did it again a little later, and I looked a little closer. It didn’t look totally normal. Just something about it struck me as wrong. I filed it away as an anomaly to not worry about unless something came of it.
Later that night, Brock saw Ronan do the same thing for the first time – head smashed into shoulder, arm jerked up, and it upset him greatly. He asked me, “Why is he doing that? What is that? Is it a twitch? That doesn’t look right.” Brock witnessed him do it several more times that night, and became increasingly more upset each time.
The next day, Saturday, we saw him do it multiple times, and began to question what could be going on. Ear infection? But he’s not upset, and no fever. Maybe water in his ears? Probably not something serious at all. Maybe a muscle twitch?
When I got to work Saturday night, I decided to ask a doctor. I described what was going on to one of the physicians, and he told me, “Hmm. Yeah, sounds like it could be seizure activity. I would take him to his pediatrician on Monday, and get him checked out just to be safe. They’ll do an EEG, and make sure his brain waves are normal.” He didn’t sound upset or freaked out, so I tried not to be upset or freaked out. Then I got some text messages from Brock that told me, “I just put my hand in between his head and his shoulder when he does it. His whole right side is seizing up, he can’t control it.” I called him and told him what the doctor said, and tried not to let him freak out too badly, but it was really starting to bother both of us.
I started second guessing my decision, and wondering if we should take him somewhere to be evaluated sooner.
Sunday morning, when I got home from work, I woke Ronan up to nurse him before I went to sleep, and we spent a little special time together. All of a sudden, he sort of spaced out. His eyes lost focus, and he wouldn’t respond to me – shoulder jerk, shoulder jerk – snap back. He acted like nothing had happened. It freaked me out again. So Sunday night, when I had a free moment, I called up to the Pediatrics floor, and asked if there were any Pediatricians in the hospital by chance. The nurse told me no, but asked me what was going on. I described to her the situation, and she said, “What you have just told me sounds very bad. Everything you have described is bad. I would get him to the ER right away and have him evaluated.”
“Right away?” I asked, “At 3:30 in the morning?”
“If what you are saying is accurate, I wouldn’t wait. Wake him up and go.”
Next, in a panic, I called Brock, leaving a message on his machine and told him to wake up and call me back. Because there was no answer, I got upset and called my pediatric office, hoping for a 3rd opinion that would agree with one estimation of the situation or the other. I talked to the call nurse for about 15 minutes, and went through the same story again. She asked me a bunch of questions, and then came to this conclusion: “If he’s been doing it since Friday, and it hasn’t worsened, he’s not losing consciousness or crying out in pain, I think you’re safe to wait until morning. But call first thing and get an appointment. I will make sure I leave a message for them saying they need to get you in immediately.”
For the rest of the night, I fretted and worried, going back and forth between one possibility and another. Could it be a Tourette’s Tick? I read a book not too long ago about a boy whose life was taken over by ticks and rituals, tried hundreds of different drug combination and felt like his life was entirely dominated by the judgments he was handed for something he couldn’t control. This was terrifying. Could it be Seizures? What would that mean? What if it’s a brain tumor, causing involuntary movement? Or some other neurological problem? What if his muscle is developing improperly? Your brain can do horrible, awful things when idle, and I’m thankful last night was a busy night.
I got home around 7 am and crawled into bed. I told Brock that he needed to wake up at 8am and call the office for an appointment; tell them it was urgent to us to get in. I hoped that it would be early enough to get our fears assuaged, and late enough that I could catch a couple hours of sleep. At 8:05 am, Brock woke me up and said to get ready, we had an appointment at 9:15, which meant we had to leave soon.
We got to the office and checked in. When we were taken back to the room, the nurse asked us what was going on. We described it to her, and she seemed a little concerned, then told us the doctor would be with us in a moment. Now, I have a love-hate relationship with my Pediatrician. He is very dismissing, and can often make me feel silly for worrying about something very valid to me, which pisses me off. But he also takes something he deems to be serious VERY seriously, and will move aggressively to be sure it is addressed and taken care of. He came in and asked us questions. We went through the same description we had given everyone else, and he probed deeper. Asked about sleeping habits, and eating. Asked if there were any other similar symptoms. Asked if there were anything common factors we’ve noticed that caused the reactions.
Then he brought up Ronan’s GERD.
He told us after a few minutes that this sounds fairly serious, and is worth a full work-up. He said he was going to order an EEG to rule out Petty Mal brain activity, but he was pretty sure it would be normal. He then said he was going to order an Upper GI, and a full food allergy panel. The connection wasn’t immediately there for us, so he explained.
He said there is something called Sandifer’s Syndrome, which is related to GERD. Basically, it’s the condition where a child is in pain because of reflux, and it causes them to posture their body in such a way as to give relief. Strangely, it’s commonly mistaken for seizures. Ronan has been on Prevacid for his reflux for several months now, and missing even one dose of his medicine can cause his symptoms to reoccur so heavily that it takes days to remiss again. Our pediatrician said it sounds like his GERD is still very active, and not being entirely controlled by the medicine. He also said some GERD cannot be controlled by medicine. But he wanted to get all of our bases covered.
We spend several hours at the hospital being tested, and have to go back for more tests. Ronan had to have several vials of blood drawn, and I think that is one of the most horrible things to have to endure. We also had him checked for MRSA, because the spot where he had a needle that was dropped on the floor injected had developed a pimple. (Thankfully it appeared to be normal.) All of this on just one hour of sleep.
So, with several fears quieted, we have time to wait until all of the tests are complete and a diagnosis is given. I’m thankful that my Ped sounded so sure, and was very comforting. I’m thankful he was willing to move quickly. And I hope this is all that is going on. I’m sorry for keeping it secret, but it was important to us not to sound any alarms over something that COULD actually have been nothing.
