At age 11 and out of the blue, Jimmy lost his balance. His diagnosis is Acute Cerebellar Ataxia. He is currently wheelchair bound and we are working hard to find whatever it is that we need to fix. Here's where I'll try to keep everyone in the loop about what's going on.

Sunday, May 2, 2010

The first two days: worry and doubt

On Tuesday, April 20, I came home from a dinner party and my husband reported that our 11 year old son Jimmy had been complaining of dizziness. According to Bill, Jimmy stood up after American Idol and asked: "Was that an earthquake?" No one else had felt a thing, so he went ahead to bed and although he said the room was spinning, he crashed out and we all expected there to be no lingering story the next day.

Wednesday was Administrative Professionals Day, and I had plans to take my secretary to lunch. When Jimmy got up, I waited to see if he would bring up the incident from the night before. Right away, he complained of dizziness and said that he felt very wobbly. He was rocking a bit from front to back, but able to get around okay and I was unsure about how seriously to take it. He had only been back at school for ONE DAY after a 3 week spring break, and I suspected that he just wanted to crawl back into bed. I told him about my plans for the day, and with a tilted head I looked him in the eye and asked: "Do you think I should cancel my appointments and take you to the doctor?" He answered: "I think so."

So I called the pediatrician's office and lo and behold, our very own doctor was available for a 9:30 appointment. We took Clara to school and I told the principal that I was going to run Jimmy over to the doctor and would probably drop him off before lunch. I called my secretary and told her that I was pretty sure that the doctor would find an ear infection, and I'd be there in time for our lunch date.

Well, his ears looked fine. There was no obvious sign of any illness or cause for the symptoms that Jimmy was describing. The doctor hyptothesized that an inner ear infection might be causing some vertigo, and he prescribed Meclizine and sent us home for the day with the ominous warning: "if it doesn't get better in a couple of days, we'll need to talk."

On Thursday, it was clear that Jimmy could not go to school. He continued to wobble whenever he stood or tried to walk. I took him to a local theater where his school was having a field trip, and he needed more and more help getting around as the morning progressed. After the play, I took us to the wrong level in the parking garage, and at one point I realized that we were far from the car and that my son could not walk with me to find it. I parked him against a railing and went to fetch the car, then drove back down to get him. He was unable to walk from the railing to the car. I started to get scared.

He deteriorated over the course of that day. It was a Thursday, which means Survivor night in our household. We cooked dinner and then watched it together, but he needed a lot of help to get to bed afterwards. Once the kids were in bed, I fixed myself a drink and sat down to relax for the night. Jimmy got up to use the bathroom, and he fell. I helped him back to bed, and then poured my drink down the sink drain. I had a terrible feeling in my gut, I contemplated taking him to the ER right then, but he was tired and so was I, and he seemed okay to sleep. I decided to call the pediatrician first thing in the morning.

On Friday morning, I called the pediatrician's office around 7:30 to verify that they opened at 8:00 am. I thought I'd listen to the recorded info and then call back after getting the kids up. One of the options that the recording gave was to speak to a medical advise line, so I selected that number and was connected to a triage nurse. It was difficult to describe his symptoms without freaking out. It's one thing to see your child wobble and wonder if something weird was going on, but quite another to tell a health care professional that he was unable to stand without assistance, and when she asked: "Can he walk?" I had to say no. She instructed me that he needed to be seen within the hour. By this time, the office was almost open and our Doctor was scheduled to be in that day, so I thought I could take Clara to school and then head over. The triage nurse paged the doctor on call, whom I spoke with a couple of times to corroborate this plan. Just as I headed back to my room to change clothes before leaving the house, the doctor called again and said that our pediatrician had reviewed the case and wanted us to head to the Emergency Room at Children's Hospital.

to be continued... I want to get all this down before we start to forget. Or... we could forget

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