All cracked up

Since the cast change a couple of weeks ago, Zach has been obviously been in some discomfort. A good bit of this we blame on his stomach issues. However we've also been pretty sure that his cast is a bit too tight as well.

So, yesterday after his infusion we too Zach to see Dr. Jofe, who agreed with us that it looked too tight. His solution was to split the cast from under each armpit all the way down to the waist, then to tape the halves together. This allows the cast to flex and expand a little while still protecting Zach's back.

The actual cutting of the cast scared the crap out of Zach. Literally if you know what I mean.

Well, we eventually got that mess cleaned up and we were on our way. Zach seems to be a little more comfortable now thankfully. He is going to see Dr. Tucker this afternoon to follow up with his "digestive" issues.

I'm still trying to figure out what motivates a doctor to want to specialize in the poop field?

I can imagine the converation when the med school students are sitting around discussing their future plans...

"I love kids, I'm going to be a pediatrician!"
"I'm interested in the heart, I'm going to be a cardiologist!"
"Poop! I love to deal with poop!" (This is the point where his friends decide to sit just a little further away from him...)

Anyway, Dr. Jofe is going to be taking Zach out of the cast and putting him in a brace in a few weeks. (Yea!) Hopefully that will make life better.

What a gas

Well, I think we may have found the cause of Zach's recent problems - gas.

We had noticed, and his physical therapist had mentioned that Zach has been burping lately. Seeing as though he has never done this before, I started to think that prehaps it is severe pain from gas that is causing his episodes and his lack of appetite.

So, a few days ago we started giving him Gas-X before meals. Since then, he hasn't had any major "episodes", and is starting to eat normally again. The Miralax is also starting to do its thing - too well at times...

Life is much better, but MPS still sucks.

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.