Tuesday, July 2, 2013
Those of you on Facebook got to see a glimpse of our minor medical drama this week. I thought I'd elaborate a bit for those of you interested in exactly why we were so worked up over what turned out to be allergies.
Most kids with spina bifida--about 95%--develop a secondary condition known as hydrocephalous. This is sometimes known as "water on the brain". Basically, all of us have something called cerebro spinal fluid circulating through our brains all the time. Kind of like oil in an engine, I guess. Hydrocephalous develops when the fluid is unable to properly drain from the brain and get backed up causing swelling. This used to be a huge problem and, I believe, the main cause of death in children born with spina bifida. Fortunately, doctors have discovered in the last few decades how to "shunt" the fluid out of the brain using a valve and flexible tubing. The fluid is drained into the abdomen where it is absorbed by the body.
Joseph had a shunt placed at birth and, actually, the first one never worked all that well. Some of you may remember that he had a lump on the side of his head for the first few months of his life. Once Joseph was five months old one of our neurosurgeons basically gave the other an ultimatum and we had it "revised". It was a simple procedure and Joseph was home that day. And, actually, there was a very minor complication that required a follow-up surgery the next day which also went fine and we were also allowed to go home after a few hours. It's never fun to hand your child over to anesthesiologists and surgeons but, as brain surgery goes, it's not so bad.
Since then, we've had no problems with Joseph's shunt, but the threat is always there. The first few weeks after surgery there is always a threat of infection. Later on, there is the worry about the valve malfunctioning or wearing out. And, despite the fact that plenty of extra tubing was included with the original shunt, there is the chance that Joseph will outgrow it one day.\
How do you know when the shunt is failing? Well, that's the tricky part. The symptoms of shunt failure can include headache, vomiting, irritability, personality change, sleepiness, vision problems. Basically, lots of things that could be totally innocuous or easily explainable symptoms in most kids. Some shunt failures present with all the symptoms. But we also once met an adult patient at the hospital waiting for her shunt to be repaired. Her only symptom was "a little nausea". So, sometimes it's when you have just one or two of these symptoms and no other explanation for them that you get the most worried.
Sunday night Joseph complained of pain behind one eye. Normally I'd think, "sinuses." But his head didn't hurt, his nose didn't hurt, he wasn't sniffly or coughing or sneezing or anything. Just eye pain. Monday morning it was worse so we called the neurosurgeon. He said, "It's probably nothing, but . . ." You don't want to mess around when your brain is on the line. He directed us toward our opthamologist who could take a look at the optic nerve and said we'd follow that with an MRI and an office visit and, if necessary, surgery to repair the shunt. Despite the fact that we've been through this before, it's not something we look forward to. Joseph, fortunately, is an incredibly laid back kid. In fact, the fact that he was even complaining about his eye is what had me the most concerned since he never complains (except about chores and school).
Our fantastic opthamologist tacked Joseph on after his last appointment of the day and checked things out. The verdict: he has allergies. Why he has no other symptoms is a mystery to us but we are confident in our doctor's ability to assess things and there was no pressure on the optic nerves which would have indicated pressure in the brain.
I'll try to get up another update soon (with photos!) of Joseph's new chair.