September 26, 2007

We Have to Get These Seizures to Stop

These are Evan's words, and he's right, we HAVE to get these seizures to stop! This is what he said last night while he was having a seizure. We are so thankful that Evan doesn't loose consciousness while he has seizures, but it was heartbreaking to hear him say, "we have to get these seizures to stop" while his little body shook.

Yesterday was a record day for Evan and we counted 30 seizures. This is not the type of record we want him to go for! Today hasn't been much better, but we're hoping things will calm down soon.

We are preparing to begin the process of introducing a new drug, Klonopin, and weaning him off Depakote. Evan can't be on Depakote for surgery because it is known to have a blood clotting effect. A wean takes a few weeks so we'll be starting to get him off Depakote as soon as we pick up the Klonopin at the pharmacy. Hopefully that will be tomorrow, but the pharmacy had to order it, which seems to be the routine for any new AED we try.

September 25, 2007

My Brother Ate My Homework

Not every kid can really use that excuse, but last night Aria was working on her homework and stepped away from it for a few minutes. Evan saw his chance and quickly picked up the paper and took a bite out of it. Rob and I were somewhere between shocked and amused and Rob wrestled the paper away from Evan, getting most of the bits out of his mouth. After it dried we taped it back together and it's almost as good as new. Aria was upset and first but then saw the humor in telling her teacher her brother ate her homework!

When Evan does stuff like this I always think it has something to do with his medication, but how many times can you use that excuse before people think you're just making that up? And what if it isn't the medication! The last one he was on definitely made him aggressive and now he's on a new drug but I'm not sure if it's the drug or not. My gut has been telling me for a while that this med isn't working for him, from a personality standpoint. Maybe we need to look at that more seriously now. The medication certainly isn't controlling his seizures.

September 19, 2007

Lots of News

We've had so much going on that our lives have been is a spin for a while. I'm not sure things will slow down anytime soon, but the latest info is this...

We talked to the epilepsy team at UCLA over the phone and they presented Evan's case at their weekly meeting. They agreed that surgery is the next step and would be willing to see us and perform the surgery if we wanted to make the trek out there. Rob and I are not sure there is a real compelling reason to go to UCLA for this. We are at the point of comparing two groups of doctors at the top of their field, but with very different philosophies on surgery. Either UCLA or NYU would probably do an excellent job so that doesn't make the decision easier. We have decided to move forward with NYU after talking to a lot of doctors, hospitals and patients. Most families we've talked to have been really happy with NYU, but no hospital is perfect and we did find a couple patients who were not thrilled with the experience at NYU. I'm actually happy to know what issues other families have had so we can work hard to avoid repeating their experiences. We've been really happy with NYU so far and I guess when you get to this point you have to go with your gut.

MEG Scan
We still haven't heard from the insurance company about covering the MEG scan and Evan had it on Monday, so I guess it doesn't matter if they pre-approve it or not. Hopefully we won't be stuck with a big bill, but we don't plan to give up easily so they may as well just approve it now. We should have results from the MEG in two weeks.

Dr. Weiner, the neurosurgeon, called me back and he was really great to talk to. He seemed really down-to-earth and set up a "tentative" date for surgery. It's on his schedule as tentative because he doesn't usually schedule surgeries before meeting with the patient. Minor technicalities! I should mention that Dr. Weiner is a pretty hot shot neurosurgeon and I have yet to hear anything but positive feedback on him. He is highly respected by his colleagues and adored by his patients, so I don't think we could ask for more than that. Here's what we have set up:

Oct. 22 - Intro meeting with Dr. Weiner & pre-surgical workup

Nov. 8 - Surgery - invasive monitoring / grids applied directly to brain
Nov. 15 - Surgery - remove tuber from brain
Nov. 21 - Surgery - remove more if necessary; doctor will decide on Nov. 15 if this surgery is needed

NYC Accommodations
We contacted FACES, a non-profit that works directly with the Epilepsy Center at NYU Hospital and they have three apartments available for anyone staying at the hospital for over a week. The apartments get booked early because it's a free place to stay in Manhattan, just minutes from the hospital and we were lucky enough to get a reservation for the whole stay. We'll be in a studio apartment about three blocks from the hospital. We feel very fortunate to have found this resource! A studio apartment in NYC is most likely pretty small, but we won't be there much and Rob and I will be taking turns sleeping at the hospital with Evan.

September 09, 2007

Cell Phone Nightmare

So, the other thing we were trying to get taken care of this week is the scheduling of Evan's surgery. We decided to get something at least tentatively scheduled at NYU to give us a date to work around, especially since we are leaning toward NYU. We have really come a long way -- I never thought we would be to the point where we'd feel better having a surgery date planned.

I've been walking around all week, carrying my cell phone like it's a precious jewel because the only person who can schedule this surgery is Dr. Weiner, the neurosurgeon at NYU, and I didn't want to miss his call. Of course, that's exactly what happened when both he and his secretary tried multiple times to call my cell phone which was rerouting to a fax machine. ARG! They had the right number and were calling from two different phones so I have no idea how that happened. As wonderful as modern technology is, it's not infallible I guess. Not a huge deal in the big scheme of things, but a little frustrating. Dr. Weiner is in the office on Mondays (surgery Tues. - Fri.) so hopefully we'll catch up then.

September 08, 2007

Big Week

This was a really busy week. On top of having Aria's first day of kindergarten, orientations at Evan's preschool and the craziness of trying to cram 5 days of work into 4 days because of Labor Day weekend, we also had a lot of medical things to take care of.

We called the Epilepsy / TSC Dept. at UCLA and talked with them about their surgery process. UCLA and NYU have very different philosophies regarding this type of surgery. NYU's is very aggressive - the most aggressive in the world, taking patients no other hospital will consider, although this is not Evan's situation. UCLA's approach is a less invasive and gentler approach (if you can call brain surgery gentle) relying more on pre-surgical testing and not doing invasive monitoring. Both are excellent hospitals and doing revolutionary work in this specific area of neurosurgery. UCLA was wonderful to talk to and we sent them Evan's records and CDs of scans -- they will be presenting Evan's case to their Epilepsy team on Monday.

We finally received the Letter of Medical Necessity from NYU to submit to our insurance company for our final pre-approval appeal for the cost of the MEG scan Evan will be having on Monday, 9/17. It took a little time to get the letter because Evan's file was not in the office while his case was waiting to be presented to the Epilepsy team at NYU. I have been working with the HR rep who deals directly with the insurance company and she is getting the packet of information to her contact who will escalate Evan's case so we should have an answer before the end of the week. Nothing like waiting till the last minute to get this taken care of! It they deny the appeal we will start the fight all over again with the claims dept. after the test has been done. We will see Dr. LaJoie on Friday, 9/14 during this trip to NY. We'll be staying at the Ronald McDonald House again and will bring Aria with us on this trip. The up side is that we'll be in NY for the weekend and will be able to do some fun stuff with the kids.

September 04, 2007

That's My Brain!

On Aria's first day of kindergarten the principal hosted a coffee for any parents who wanted to stop in. It was in the library and there were several people who showed up. Both our kids love books and Evan found a huge book of the human body to look at. Rob helped him get it down and turn the pages and when he saw the page with the brain on it he said, "That's my brain!"

Then he did the next logical thing and positioned his head over the illustration in the book...

The irony of this act was lost on Evan, but not us.