Wednesday, January 19, 2011

What a way to start off the New Year...

ER visit (via ambulance), overnight video EEG, MRI, gobs of seizures, lots of medication changes and mood swings. All that on top of the normal this time of the year illnesses.

Let's just go straight to the seizures. Sophie had a relapse about 11 months post-op. We increased her Depakote and they immediately stopped. Then she relapsed again 2 months later. We again increased her Depakote and they immediately stopped. (But in the meantime, we scheduled a 24hr video EEG. But, by the time we got in for it, her seizures had stopped so nothing could be recorded on the EEG to determine where the seizures were originating from.)

Then she had her third relapse a few months later (it is now August). So instead of immediately increasing her meds again (hindsight...I believe this was STUPID), we decide to go in for another 24 video EEG to figure out what was really going on. Unfortunately, it took at least 6 weeks to finally get in. And they read absolutely nothing new on the EEG. So I (because I blame myself for everything) wasted all that time doing nothing while she continued to seize EVERY. SINGLE. DAY.

So we decide to wean the Dilantin* and start Vimpat. Seizures became worse. I was in a panic. I did not know what to do. I felt so completely lost. So depressed. So worthless. So helpless. So I turned to Dr. Chugani. We decided that we needed to see him in person to get some direction on what to do next.

*Through all the Depakote increases, her level remained in the mid 30s because of the Dilantin interaction. That's why we weaned it.

Which brings me to 2 weeks ago. A whirlwind of a week. Starting off with the ER visit because Sophie started nonstop trembling at 3am. Something she has never done before. Then we left for Detroit a few days later. Where she vomited at least 4 times in the middle of the night during her EEG. Which almost cancelled her MRI. Luckily, everything worked out and we completed all the testing and met with Dr. Chugani.

He got straight to the point. She was having seizures that originated in the left central region (the motor cortex on the side of the brain she had surgery...the only remaining tissue on that side). Since there was a focus we could opt for another surgery.

Hold up. Wait. Huh? What? Slow down. Breathe.

He did back up and say that we should try a few medications first. With surgery, it's like the brain resets itself. So we are able to go back and try medications that she originally failed. Because maybe those medications were controlling the seizures originating in the left central region but not the ones that were originating in the areas of the brain that was removed. So maybe this time around it would be different. Makes sense.

She is having Infantile Spasms (I hate that name...sounds way too mild). So we need to start over with the front line treatment for Infantile Spasms.


Which, at this point, sounds better than surgery. But it still makes the room spin and makes me want to vomit.


That's what I'm thinking. This is f**cked up. You remove almost half her brain and it is not enough for those f**king seizures. They (seizures) want more. Well, they can't have more. She's had enough of her brain removed. ENOUGH. I feel so superficial for wanting to hold on to that little strip of brain. SO SUPERFICIAL. Because if it was any other area...I'd say take it. Which I did...they already have. This is all that is remaining.

So we decided not to jump onto the ACTH bandwagon just yet. We weaned the Vimpat and added back the Dilantin and reduced the Depakote. Wishful thinking really. It worked once. Maybe it will work again. We will see. We have the rest of this week to give it a chance. But our local neuro is already getting things started on the ACTH. It won't be so easy to administer this time around. She's 5 years old. She's 46 inches tall. She weighs 47 pounds. She is strong. Not so easy to inject her with a big ole needle in her thigh twice a day. It's not a quick easy poke.

So that's where we are at. We have to be very aggressive. We are fortunate the seizures have not yet spread to the right side of the brain which would be detrimental to her learning and development. So, if the ACTH fails, then we will try Vigabatrin. And if Vigabatrin fails, then...most

But, I have to add... I DO NOT EVER REGRET Sophie having the first (and hopefully only) surgery. NEVER. Her developmental gain has been more than worth it. She is amazing. And she continues to amaze us. There isn't a day that goes by where I am just in awe of her. Her speech and language is so rich. And her memory is so clear. She talks in complete sentences about things that have happened months ago.

I am holding on to the hope that I do not have to put her through any more pain. I just don't know if my heart can take it. Did I mention that we are also in the midst of all the paperwork and testing for her to transition to kindergarten in the fall?!?!


Anonymous said...

Prayers being said and fingers crossed that one of these meds will cage the seizure monster. I too thank God that Sophie was a candidate for the surgery she had. When you see the burst of comprehension and joy that followed, how could one not. A whole new world opened up for her.

I know there's nothing we can do but be here for all of you, just on standby in the background, sending all our love hopes and prayers Sophie's way.


lisa said...

F*&K is right. My stomach hurts just reading all of that. ACTH?! Its like a nightmare that won't go away, isn't it? The thought of another surgery is pretty vomit inducing too...lets hope and pray she doesn't have to go there.

On the plus least the focus is on her "bad" least she is learning, growing, amazing! I just hate that you are having to deal with the juggling of how to control these seizures. Why can't this crap just be straightforward? The trial and error stuff is so exhausting.

Kindergarten! That is so exciting! We still don't know if Julia will start kindergarten, I'm leaning heavily towards an extra year of preschool.

Big hugs to you.

lisa said...

PS-Love the picture of her with Chugani! I adore that man.

Jamie said...

maybe its because my madie is giving me one of those days today that is making me teary reading your post.. man oh man. Dr C is the man..we traveled very far to see him and Madie was not a candidate for surgery.. I hate hate hate hate reason found for why madie has them. ACTH was by far the hardest thing I ever did.. her little chubby baby legs getting bruses from all the needles.. I pray that you dont have to go that route.(again!) No matter what stage our kids are at they are all amazing fighters. You'll see. If I loose faith I loose me.

Holli said...

I can't even imagine having to start the ACTH again. I'm so sorry this is happening again. And I totally get not wanting another surgery even when you know where the seizures are coming from. Our surgeons are already talking about another surgery for Austin. WHAT?? He hasn't even recovered from the first one. But, just like you, we all wanted to reserve the motor area. Mobility was one of our strongest areas and to give him such a deficit seemed wrong. We just hoped and prayed removing the other regions would be enough. surgery is better than 2 (or more) and no seizures are more important to me than him having one sided paralysis. But, I wanted it all..just like you did. Full mobility AND no seizures.

I'm praying that this med tweak helps and no ACTH is needed. It's infuriating that all our kids have been through is not enough. I'm beyond angry for all of us.

Keep us posted and I'll be praying...


MJStump said...

Oh've got me in tears. I can only imagine how sick you must have been when the seizures returned, and were gone and then repeated again and again.

I am sending you all the biggest hug ever!

I do pray and pray so much that the new med combo does exactly what you need it to ACTH.

I love that you mentioned that Sophie can recall things from months ago...Kylie so much like that too...Amazing!

There are little moments that I have shared with Kylie that remind me of Sophie and I think of how we all met last year. You guys have a special place in our hearts and we will help in any way we can...just say the word and we will be there.

Hugs, love, and prayers,

Lori said...

Oh Elaine. I am so sorry. I feel sick. I can't imagine what you guys are going through AGAIN!!!! (well, the seizures and the ACTH part I can) but not the chance of having to do it a second time. I hope hope hope that med changes work for Sophie. What a sucky start to your year. I can only pray that it gets better. All my love and prayers


happy's mommy said...

Wow, sweetie...

I didn't think I could love you more.


I hope you felt that. Cause I was using my super powers to send them to you for real...


Sinead said...

I'm so sorry to hear that. Poor Sophie (and her family) has been through so much. There is nothing worse than people trying to cure your child but I can't help myself - sorry. I have read oral prednisolone is as effective in high doses as ACTH. Could they try it for a week before starting the shots or would that be too much time to waste? Sorry. I'm a nosey Parker. Wish you did not have to go through all this. Sorry.

Liz said...

I agree with everyone else......this just f-ing sucks. ACTH is the one thing I swore up and down I'd never do again to Maddie, but at times, I think about trying it again because despite all the awful stuff (it was hell for her!) she did make great developmental gains during that period.

I'm so sorry this is where you guys are now. I hate it. But I'm thinking of y'all and keeping Sophie in my prayers.

Anonymous said...

Keep up your courage. You have been through worse. Be hopeful....the good thing in all this is that you still have options open.

Alicia said...

Wow. I can't imagine hearing Dr. Chugani say those words again. Remy has had one, maybe two (not sure about this one) seizures since surgery. It took every ounce of strenth in my body not to come completely unglued. Strength...and love...and peace...all heading your way. :)

Victoria Strong said...

I am so, so, so sorry! Your sweet, beautiful little Sophie doesn't deserve all of this. No child does. I am just so sorry you are having to face this.

Jenna said...

Hi Sophie
My name is Jenna and I came across your site. U are an amazing brave courageous fighter, inspiration and hero. i am sorry that you have to go through so much during your young life. I do too and I don't like other kids to go through so much pain, and so many operations like I have gone through. I was born with a rare life threatening disease. My site:

The Scott Family said...

Thank you for your comment! The internet still amazes me at times with the connections and support you can find on here. I will gladly take any advice you have, and really appreciate you taking the time to leave feedback.
Praying for you and Sophie!