May 30, 2007

Blog Alert

I added a blog alert to this blog so you can receive emails letting you know when we update the Medical Maze blog. If you are interested, just add your name to the subscription box to the right.

After three attempts I finally got it working so I'm feeling pretty proud of myself!


Evan had his annual MRI today and we are hoping there won't be any surprises when we get the results. I think the hardest thing about taking Evan to get an MRI is watching him get sedated. They have to sedate because there is no way a child this young would be able to lie still for the 45 min. test.

The anesthesiologist gives him a gas that knocks him out before administering something stronger through an IV. The first time we saw Evan go under it was pretty freaky -- I was holding him and then his body just went limp. We were more prepared this time, but I never feel ok about the testing process until Evan wakes up in the recovery room.

After Evan is sedated we have to return to the waiting room until the testing is completed and the nurse comes to get us. We are not the most patient people, so it's hard to wait, and all the trashy People magazines are outdated and I already know Angelina and Brad were planning to adopt another baby -- although in another year this headline may be fresh again!

Every time Evan's been sedated for a test, the nurses always recommend we go get breakfast and come back in an hour, but somehow that just doesn't seem right to us. I'm sure other parents leave and I'm sure that's fine, but I guess we're just too soft. So we sat and waited and everything was fine.

May 16, 2007

Doctor Shopping

We have been thinking about switching doctors for Evan for quite some time and it looks like we're moving in that direction now. Perhaps we are fickle, demanding, picky, difficult, etc. but it just seems like it's time for us to move to a different hospital for Evan's treatment. It has taken us a long time to come to this conclusion, because the hospitals we're looking at are out-of-state. There aren't a lot of doctors in the county who specialize in TSC, so the choices are limited.

The two doctors we are looking at are Dr. Orrin Devinsky (in NYC) and Dr. Elizabeth Thiele (in Boston). They are both in the top of their field and are widely respected. We've spoken to each of them and really liked both, so it's a tough choice.

In researching the two doctors we also came across a very comprehensive website on TSC that was created by Massachusetts General Hospital and features Dr. Thiele. It does a really good job of thoroughly explaining the disease. Check it out if you are interested...

Stay tuned, I'm sure there will be more info to come shortly.

May 14, 2007

Still Seizing...

Well, Evan is off the Vigabatrin because it wasn't controlling his seizures well enough to warrant risking the nasty side effects, but his seizures have tripled. It was obviously doing something and it's hard to take Evan off something that had some positive effect. We made the best decision we could and now we're looking for the next treatment.

We've been a little schizophrenic about what the next step will be and I apologize for not blogging in so long while we try to sort things out. We don't want to have Evan on a restrictive diet next month because we are going to Disney World and it just seems wrong not to be able to eat ice cream while we're there. Selfish? Maybe. Compassionate? Definitely!

So, we're on to the next drug for now and are waiting to get a prescription from his doctor. The Ketogenic Diet is on hold, at least temporarily.

Thank you!

I just want to thank everyone who supported the Moss Mania team on the Epilepsy Walk! We raised over $3000 which was really amazing to all of us.

The total raised by all the walkers was over $1,000,000 -- the most the Epilepsy Foundation has ever raised in a single fund-raising event. It was great to be a part of that, and the next walk is already scheduled for Saturday, March 29, 2008. We'll be there and if you want to join us, mark your calendars and let us know!

Here are a few photos from the walk...
There are so many of us, we don't even all fit in the frame!

Rob has found his kindred sprits!

Next year I'll be the one riding in the stroller!