Tuesday, February 1, 2011
The Fun Part
So the last week has been a little crazy for us. Jailen is having some pretty bad headaches again & I'm not sure why. Seems like it's every other day. The 1st one was in the middle of the night. His whining woke me up as he was rubbing his head. I noticed he was very sweaty. I gave him some Advil & we were back to sleep in no time. It wasn't a big deal. When we woke up for the day he seemed fine so I bathed him again (since he was sweaty through the night) & off to school & work we went. As soon as I logged in my computer at work I got a phone call that he was crying, sweating, & holding his head again. Without hesitation I left work & brought him home. Advil, breakfast, nap, play. He was fine. Next day no issues. The following day there was another headache, this time with vomiting. By the morning he was fine & went back to school with no problems. That evening he looked pale & kept complaining that his back hurt. Then there were a couple of problem free days (the whole weekend). Monday, no school. Crying with a headache again. He ate breakfast, took 2 naps, skipping lunch, & took over an hour to feed him dinner. He seems sluggish & tired. No fever, no sinus trouble, no coughing. Absolutely no other symptoms. Many people would have taken him to a doctor or ER by now, but Jailen's situation is a bit different. We've done the whole running to the ER a million times with no answers.
The tricky part: In addition to everything else, Jailen has a rare condition called Slit Ventricle Syndrome. The ventricles of his brain have collapsed & are now "slit-like". This is most likely due to an overdrainage of the shunt that he has. Symptoms of this syndrome resemble a shunt malfunction. If I'm not mistaken, only 12% of people who acquire shunts during infancy actually ever end up with this syndrome. Only 6% of that 12% actually require the surgery that Jailen underwent in May 2007. It's extremely rare, so most doctors know little about it. We were lucky & were seeing Dr.Richard Coulon with Children's Hospital at the time. Sadly he has moved to West Virginia. We miss him!! Even he had only done the bilateral cranial decompression surgery once before.
Anyway, because the ventricles of Jailen's brain are so small now, most doctor's look at his scans & will immediately say, "Everything looks good!" That's why it makes no sense to run him to the ER everytime he has a headache &/or vomiting. It's tricky & complicated. I'm thinking about having a new CT scan done, requesting the 1st one done after the surgery of 2007, and mailing it all to Dr.Coulon in West Virginia with hopes that he'll have some free telephone/mail advice for us.