Waiting for his smile.

>> Friday, April 4, 2014

Every so often, no matter how many seizures one sees, there is one, out of the many that affects reason.

Tonight, Bug had one of those.

It wasn't particularly ugly, it was 2 minutes, he was fully Tonic/Clonic and it took him a while to recover. This has happened THOUSANDS of times.

But tonight, it took all my strength not to scream and cry. I sat, holding him, our eyes locked, remembering.

Remembering Bug, minutes old, crying and so small. First time Mom, oldest child, so special in so many ways, and I thought: Did I do this to him? Did something I did, or didn't do, contribute to these horrible moments. It's fleeting, we all do it, and we all know to dismiss it. It is what it is and it sucks. But no amount of blame or excuses makes it anything other than what it is: The enemy.

I remembered watching him with wonder. Dreaming about his future, his life, his energy, everything about him was so amazing. He walked early-ish, his development was advanced, he glowed with beauty.

He still glows, and he still smiles, and then he spends HOURS twitching and trying to get back into the reality of his life. He fights and he ALWAYS wins. But those moments when he is without himself, those moments when he is caught in that seizure, those are so difficult to accept. His normal, his seizing, does not slow him down much, he gets up and keeps going...I ponder and I plan and I yell at the universe for taking him from me. Sitting in front of me, for those few moments when he is gone, they should NEVER be. He should NEVER feel them. And yet, he does. And we do.

Tonight, that not-so-unusual seizure...pissed me off. Made me cry. Made me hate. And made me resolute. But mostly, it made me very aware that I am his Mom and I am his comfort and I am his biggest advocate.

It's been 30 minutes and I am still waiting for his smile.


Because he's awesome!

>> Tuesday, April 1, 2014

In the course of reading more stuffs about treating the Autoantibody Bug has, and the Cerebral Folate Deficiency that comes along with it, I found that children like Bug need HIGHER than average doses of Leucovorin.

He was taking 25mg 2x a day and we like the results. A lot. We like them a lot. But still, his last lumbar puncture showed his MTHF was on the lower end of normal, and that was a year ago, before his growth spurt (some of his pants are actually too short now! We haven't had to buy new pants in two years!). I read about a 30lb 3-year-old taking 60mg a day and thought: time to up Bug.

I called to get an appointment with his Pediatrician.

Dr. Spencer is fantastic. He is just fantastic. He reads everything I bring him and doesn't always agree with me. He studies and has applied Bug's diagnosis to other children and the Leucovorin is helping! He's just awesome.

I went to see him, and he agreed: let's up him by 25mg more. Why not? So we did.


Today he got 75mg instead of 50mg. And he was chirping, humming and smiling all night. It was great.

Now, it takes some time to build up, so one dosage increase will help a little but the true results won't be known for quite some time, upwards of 6 months or a year. This is the joy that is Mitochondrial Dysfunction: It takes time for treatments to REALLY be effective.

We will wait, and we will watch and we will stay the course. Maybe we might try the Cannabis Oil, but in the meantime, this may help him and Dr. Spencer agreed. Because he's awesome! Just like Bug.


What a Seizure looks like (Graphic Content Included)


Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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