some good news, some bad

Dawson's seizures are changing.

Last week he had several days where he only had a few episodes!!! On Thursday I only saw 2 the entire day, and it was while he was sleeping. Wowzers. So great! There hasn't been a recent change in his medication either, so this change is happening on it's own. We are anxious to see where it is heading....

We even spent most of wed&thurs without the helmet. :) :) :). I thoroughly loved styling his hair again.

Then Friday was "normal" again. He had seizures again all morning and several throughout the rest of the day. I don't think I handled it very well, putting the helmet back on. I was a total grump to everybody. Then my tire blew at the car wash. I guess it was the last straw because I fell apart. Sheeeeesh. This roller coaster is draining.

The good news is, they aren't happening as often. He hasn't been doing his "head drops" either! Awesome. We don't know if it will last, but while we have this good news to share, we are grateful for it.

The bad news is that he is having longer/harder seizures when they do come. Since Saturday I have seen 4 particularly bad episodes. His sweet face looks so distorted, with his mouth open and drolling. :( Each time his right leg is completely limp and useless afterward. It takes a few minutes for him to be able to stand at all, and then about an hour of "extremely wobbly" walking, and then he finally gets back to his "normal wobbly" walk.

I am very concerned about the leg especially. He already can barely use his right hand... However, I have been reading alot about the brain lately, how it can heal etc. So i believe he will be ok. (We will find a way to make it ok). Still, it's a big worry.

I just keep wishing there was another place to take him to the doctor. We need someone who:

Cares & really Listens (doesn't assume they have the answers before they even hear the situation)

Follows through/returns phone calls (remembers us after the appointment is over)

Extremely knowledgable in epilepsy

Offers hope, but also takes this very seriously (Does NOT compare us to their other handicapped patients, treating the situation as a 'not as severe' case).

Is that expecting too much?

If we had a doctor like that, it woulf be HUGE huge. We have had so many many frustrating incidences with the doctors we see at PCMC. I am sure they are good people, and even good doctors in their specific specialty, but they are NOT good at intractable epilepsy. They are also just way, way too swamped with patients. I feel like I have to constantly battle to get any help. I have had to act like a flippin' blood hound to track down our kids' test results, or to get a doctor to call me back, etc.... It shouldn't be so hard. Don't get me wrong, I am more than happy to battle for my kids. It's just that it's hard to always be fighting, especailly when in the back of your mind you don't believe they will be able to make a difference anyway.

We just need to go somewhere else. I am looking for other options.

I have heard amazing things about some other neurologists, all of which are out of state. There is one we are especially interested in that is in Cleveland. I have been looking into heading out there. I will have to write more about that later because....it's too much. At the moment.