Wednesday, July 8, 2009

Miracle drug?

Before last Friday, we were really starting to doubt that the g-tube was the best thing for Will. It seemed like since his surgery on June 9, he was increasingly irritable, and was becoming less tolerant of his feeds. He would gag when he laid down, sat up, stood in the stander, while getting his teeth brushed, while getting his hair brushed, while getting fed, while getting burped... all the time. He would even gag if someone mentioned the word "gag." He was probably consuming less than he had prior to the surgery, and was not sleeping for more than 2 hours at a time. Everyone in the house was miserable. Poor Otis started sleeping in our closet to get away from the crying and vomit. Sometimes, I wished that I could join him!

So after exhausting all of our options with the surgical team (we didn't really want more surgery for Will), we turned to our trusty CP clinic doctor... perhaps a saint without wings, or at least at this point, a saving grace with lots of options and a prescription pad. I described what was happening with Will, and he immediately starting tossing out ideas for things we could try. He recommended stomach emptying studies (perhaps Will's stomach isn't ready for all of this extra food and is over full?), hypoallergenic formula (perhaps Will has slowly become intolerant of Pediasure?), and then he said perhaps the g-tube surgery actually caused stomach hypersensitivity (also known as gastric hyperesthesia).

Gastric hyperesthesia can cause both stomach contact and content sensitivity. It could cause the stomach to become less tolerant of food it had always had (Will had this). It could cause stomach pain which would keep someone from being happy and sleeping (Will had this). And it could cause the stomach to retch when the belly was barely touched (Will had this too).

Angel Doctor recommended that we try a drug called neurontin to counteract the stomach sensitivity. If you look up neurontin, you will see that it is primarily used as a drug to stop seizures. Will does not have seizures. It can also be used to treat adult's pain from shingles. Will doesn't have shingles either. If you look at one of the last things that neurontin is used to treat, you'll see the words "neuropathic pain." This is what Will's stomach sensitivity is caused by - pain caused by damage to the nervous system. It could be temporary, it could be longer... we just don't know.

In a funny sort of way, when you look at the side effects of neurontin, the two main ones that affect people are sleepiness and increased weight gain. Umm... hello? Miracle drug? I say that in jest of course, because there are other serious potential side effects such as tremors and decreased muscle tone, but Will's dosage is so small that we do not expect to see these.

Will has been on neurontin for almost a week. In that time, he has slept through the night every night. He is keeping every feed down and reached his calorie goal yesterday for the first time since his surgery. He is burping easily and often. He is happy. He is napping well. He has only gagged a handful of times, and has only spit up (not even vomitted) three times in a week. Most of these occurred right around the time his neurontin dose was wearing off. Prior to the neurontin, we were up to at least three full vomits per day.

Needless to say, this is the answer to a lot of prayers. All we wanted from this surgery was for Will to thrive. And we finally feel as though we've got the bag of tools we need to make that happen.

Things just can't stay quiet for too long around here though. Today, Luke and Oma took a tumble on the front walk way. Luke hit his head very hard on the concrete. Though there was no blood, we didn't take any chances and went to the UNC ER. They did a CT, which revealed a small bleed inside Luke's brain. They did a number of blood and neurologic tests over our 7 hours there, and determined that Luke's bleed was not getting any worse (his body was able to stop the bleeding) and he didn't have any neurologic deficits. We came home with strict instructions for things to watch for (typical head injury things like lethargy, vomiting, etc) and a very sore little boy. But he is in good spirits, hungry, showing off... back to being Luke.

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