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?!?!

Friday, January 14, 2011

Another blood draw...

I hate the night before Sophie has to get her blood drawn. Because I know what I have to do the moment she wakes up...get her dressed and out the door before she starts demanding food. Then the moment she sees the chair, I have to try my hardest to keep her calm. Then the moment from when they start checking out her veins, I have to use every muscle in my body to keep her screaming, fighting, thrashing body still enough so they can draw her blood. All the while, trying to keep my emotions in check because I am heartbroken in the inside seeing the tears just pour out of her eyes and the snot running down her face. Because this is how much she HATES getting her blood drawn.

But NOT today.

Today was different.

Today was blogworthy.

Today started off as usual. I told her she had to go bye-bye with mommy. I didn't tell her where we were going. No need to unless she asked. And she was just happy to be going somewhere. So we pulled into the hospital parking lot. She was excited to get out of her carseat. As we are walking down the hall, she seems to recognize the place. She said to me "we going to see the doctor". I said "yes" which actually did not turn out to be a lie (this is the same building her neuro is in which we ended up running into). We got to the outpatient laboratory and I signed us in. She said "where's the doctor". I said "we have to wait until they call our name". So they called us back and as I was giving them our insurance information, she recognized the chair. She looked at me with the saddest eyes and said "I get shot". I said "yes you are...I am so sorry baby girl". So as we walk toward the chair, she hesitates. Her face is full of worry. I pick her up and tell her it is going to be okay. She sits on my lap and I put my arms around her. They take her arm and tie the band around it. She is remaining calm. As they stick her with the needle, she screams out and flinches. But no tears and she is calm. I tell her to sit really still so they can finish quickly. And she does. She is sitting there watching the entire thing. She says to me "all done". I say "not yet, there is one more vial to go after this (they are collecting four)". They switch out to the last vial and she says "band-aid". I tell her "yes they will give you a band-aid". They finish and she is okay...a little hesitant but still very calm. She picks out a sucker and we are on our way out.

I tell her how proud I am of her.

And she says "I brave".