Monday, May 28, 2012

The Ups and Downs of Doose

This blog is long overdue for an update. Ethan continues to have several ups and downs. He'll be great for a period of time, then we'll find ourselves right back where we were with several daily seizures, and watching our child decline. We actually had a very good run. Once we got his dose up on the clobazam he was mostly seizure free for a while. He would have a bad day mixed in here and there, but it was a marked improvement. But slowly but surely we started to see the typical path that new medications always seem to take. Small jerks came back, then drops, then tonic clonics. We would always try to find cause, maybe it was his little cold, or maybe he just had a bad day. But they came more frequently, and eventually we were back to daily seizures, and multiple tonic clonics a week, sometimes more than one in a day. We called and spoke with his doctor and they upped the Clobazam even more, and we were informed he's over the maximum dose on both the medications he's on, and that would be the last increase we could do. We took it for what it was, and continued on hoping the increase would do it. Unfortunately it didn't. The seizures returned full force just a few days later, and we are now stuck here.

Ethan also had a new MRI a couple weeks ago to check to see if they could see a reason for his central sleep apnea, and also to just general check things and compare to his last one. His last MRI was completely clean, and I found myself in limbo between wanting another clean MRI, and wanting them to find something, almost hoping that if they found something they could somehow fix it. The procedure went well, and besides Ethan being angry and groggy after waking up he did fine as well. We got the results a few days later and it was in fact clean, with just some sinus swelling. So that was good/bad news I guess! It leaves him still with no physical reasons for his seizures, and no obvious reasons for his central sleep apnea. As has been the case the whole time, we're left with no reason for this all.
Waking up after the MRI

With his health once again declining his neurologist has been pressuring us to put him on yet another drug called Felbatol. It is a risky drug, and more or less used as a last resort. It has a high chance of side effects, and requires a whole battery of tests before starting it, and blood tests every other week while on it. It also statistically has the same chance of killing his as he has of having Doose in the first place. We are required to sign a waiver for him to even be put on it. We really don't want him on it. After 12 drugs and the ketogenic diet we kind of figure that magical dangerous drug number 13 isn't going to do it, but they have informed us that they will not pursue surgical options until this drug has been marked off the list, and it's either try it or we have no other options for you. So we are begrudgingly putting him on it. Of course there is a chance it will work, but after so many fails you become very skeptical, especially when there is such a risk to it.
Snuggling with his Rhino!
If all this wasn't bad enough, one of my worst nightmares became a reality this week. We have the typical kiddie pool set up in our back yard, a little pool with a foot and a half of water, and and a slide going in. I was laying in a chair about 15 feet away watching the kids play. Ethan was at the top of the slide about to go down when he went into a tonic clonic seizure. I watched him fall down the slide and end up face down in the water as I ran to him. When I got there he was face down and seizing. I grabbed him out by the arm with one hand, as I dialed 911 into my phone on the other, not actually making the call yet. I got him out and he continued to seize for another minute or so and when he came out of it he coughed up a ton of water. I took him inside to dry him off an watch him, and put in a call to his doctor to make sure everything was ok. They said since he did cough up so much water, and was acting fine that he probably got it all up, but to call back if we saw any changes. It's definitely one of those memories, just like his very first seizure, that is burned into my brain. Just him face down in the water flailing. I can't get it out of my mind that if I had my back turned, or was farther away, or had stepped inside for a minute that he could have drowned. It was horrifying, but I'm very happy it did all turn out fine!
Handsome boy!
Our big boy also turned 5 at the end of April! I can't believe he's already 5, who knows where the time goes! He started telling us months before that he wanted a birthday party at Chuck E Cheese, so off we went to every parents favorite place.... It didn't matter, he deserved the best day every, and we would have given him anything we could. But on his actual birthday he got to open his present from mom and dad, a firetruck! I love that we can get him gifts that can secretly be used for both him and Taylor:)
My yearly picture of him in bed in the morning!
So excited!
His firetruck with sissy riding shotgun, and Jet acting as the fire dog:)
The day of his party was 2 hours of chaos, but the smiles on his face were so worth it! He had a blast! Just hope he doesn't want to go back next year:)
Blowing out the candles on his Spongebob cake!
Having a blast!

And shortly there after, and much too soon for me, school was out. Ethan graduated preschool!
That's pretty much what has been going on with Ethan over the last couple months. We do have something big we're looking forward to though, we are going on vacation at the end of June, and Ethan is finally going to get his feet in the sand!!!! It has been his wish to go to the beach for years now, and thanks to Kate, and everyone that donated that is going to be a reality! We're not stopping there though, we're also hitting Disney, Legoland, and Seaworld while we're there! Ethan can't stop talking about going to Mickey's house, and Taylor won't stop mentioning Pooh Bear's house! They will have a blast! I can't wait to go to Legoland. Of course it will be fun for the kids, but I grew up in the town it's in, so it will be fun to go back "home" after being gone for so long, and see how things have changed:) It's going to be a blast, and we can not wait!!!!

In one last bit of news we have been working on Jet's training full force. Over the last few months he has gotten so significantly better! I'm amazed at some of the things he can do, and his behavior is fantastic! He even passed his public access test last week! I will eventually get a DVD of the test, and will share it here. Just for fun we tried to get him to open a handicap door, and he got it on his third try! I haven't trained him for any tasks like that, so I was impressed. So I'll leave you with some fun doggy training pictures:)
He really is a water dog!
Don't mess with Jet, his best friends are all German shepherds:)
 They're all having hot dogs thrown at them, none of them touched them:)
Pretending he's a shepherd at training.
Video of Jet working on scent training:

Please take a second to check out Love My Canine. I don't think we would have gotten half as far as we have without their training and support!!/pages/Von-Alpenmac-German-Shepherds/144522108973685


    They grow up too fast :(
    Rhino the rat? :o
    Those pictures of Chuck-e-cheese and him graduating preschool brought tears to my eyes!
    He looks so happy, and I'm so proud of him!!
    That's an amazing present! Haha, for the both!

    Jet is amazing, I laughed so hard with the German Shepherds photo, him and his buddy's. You're funny. :)

    But now...about the Felbatol...
    That's scary.
    It's a decision I truly wish you as parents didn't have to face. Whether he goes on it, or not, I wish you guys the best of luck-- a miracle-- and so much more. God bless you, and keep you safe.
    I'm so proud of how far you've come for your son, while still being a mother to your little girl, and a wife to your husband. It reminds me of the difficult world I still have to go out and conquer, as I myself am graduating (from HS on the 31st). I may triumph, I may fail, I may become a mother within the next years, or a wife. Whatever it is that becomes of me, I only wish I have your level of dedication and strength to oversee my battles, you truly are amazing! And I'm so excited for all of you in your plans for a vacation,you all deserve it!! Please take lots of pictures and videos to share with us!! :)
    Everything will turn out okay-- Godspeed.

  2. He really is a beautiful child. That picture of him walking out the door with the Sponge Bob sweatshirt is so sweet it brought tears to my eyes. Reminds me of my own little boy. Best of luck with everything. -Fellow BBC mom