Here's how things are going in our world....

It's been rough.

Zach had his cast change done last Monday. Due to a scheduling mix-up Dr. Kaufman was not available to sedate him. Although that probably had nothing to do with it, Zach had issues with the anesthesia he was given. The procedure itself went fine, but during recovery there were issues with his heart rate dropping. Apparently he was in too deep of a sleep. They got an IV with some sugar water flowing into him, and that apparently woke him up enough to keep his heartrate up.

He was sent home that afternoon, but slept the rest of the day and night - not waking up until Tuesday morning.

When he did wake up, he went into one of his "episodes". The full body shaking, screaming etc. Janine and I decided that these episodes had gone long enough, and decided to get to the bottom of it ASAP.

We were able to get an appointment to see Dr. Tucker who is a pediatric gastroenterologist for that morning, and with Dr. Epstein our neurologist for that afternoon.

Armed with a video of Zach's episode we headed off to Dr. Tucker's office. After examining Zach and seeing the video, he felt that Zach wasn't having a seizure in the typical sense. He felt that it may be a reaction to pain, and that the pain may be related to his stomach in some way. Most likely constipation in some manner. (Ever since his operation this has been an issue.)

He didn't feel an obstruction in the bowels, but had us take an x-ray Thursday while at ERT just to rule it out. Dr. Tucker told us to have Zach take the adult dose of Miralax to hopefully get his system moving. He also told us to try to get Zach to drink 4 bottles of Ensure a day to try to fatten him up a bit. (He's dropped a good amount of weight since surgery.)

Of course Zach has no desire to drink 4 bottles of anything. Since surgery, it has been really hard to get him to eat. I assume it has something to do with his stomach issue. Hopefully it's just constipation, and not something harder to diagnose like reflux.

At our visit with Dr. Epstein he viewed the video as well and did not feel Zach was having a "seizure". He couldn't be 100% sure without actually having him hooked up to a EEG at the time it happened though. He also felt that some sort of gastric issue could be the cause. His suggestion was to keep Zach on his anti-seizure medication for now, and see if by giving the Miralax, we are able to get the "episodes" under control. If that's the case, then we can take Zach off of the anti-seizure medication.

Of course this doesn't really address the suspicion I have that the anti-seizure medication may be part of the cause of the stomach issue. It's the only new medication he is on since the surgery. Aside from being in the cast, there is nothing "different" that I can think of that would cause Zach to not want to eat. The only logical choice is either the cast or the medication is upsetting his stomach. Which do you think would be more likely?

I really hope the Miralax does Zach some good soon. It's gotten to the point where I am worried that he is not eating enough to support his body. He's already really thin, he doesn't have any more weight to lose. I don't want to see him with some kind of feeding tube, but I'm afraid that if we can't get him eating soon that will end up happening. Depressing.

Have I mentioned MPS sucks.