This unknown.

>> Tuesday, August 26, 2014

There is very little worse than watching your child slipping away without a cause. I watched my oldest child, the one I never thought I would have, dying in front of me, helpless to do anything about it.

It's just epilepsy, you might say, and epilepsy doesn't kill people.

Well, it does. But in Bug's case, the cause of the seizures was killing him. His cells were tainted, he was not producing energy, he was in Status Epilepticus 4 times in 16 months. Each time, it became harder to bring him back. 

One time, when he was in Status and in the hospital on heavy Phenobarbitol doses, I watched his heart rate drop to 36 beats per minute and I said to Glenn: Bug is going to die. And I held his little hand and I couldn't let go, I would hold him while he struggled. I listened to the heart monitor beeping slowly and expected to hear it stop. I expected to hear it stop. Glenn told me: he's not going to die, he's too strong. But I didn't believe him. I knew this unknown thing would kill him. 

4 days later, he came home and I hovered over him. I could not get enough of his smell, of his smile, of what little laughter we got.

What brought this memory back? 

Two days ago, he had 7 seizures in as many hours and he was sleeping and seizing, and sleeping and seizing. Not a good sign. And then...he slept for 14 hours and hasn't had a discernible seizure since.

It's that up and down, that: what is different? That scares me.

We know he is being treated for 'the folate thing' and that it is being successful. To a point. We also know that no one has ever seen autoantibody numbers that high before. So, is this treatment enough?

Children with what Bug has, in milder forms, are usually crippled by the age of 14, without treatment. Blind shortly after. And then...don't make me say it.

He's almost 12, so when things get abnormal, I wonder if we have to modify his treatment. But without quantitative analysis of his autoantibody levels, we have NO way to know. And no lab has the ability to do that now.

I have more info to share with his Doctor and a few more things to try. But with the way he responds to things that are supposed to help, who knows what will happen?

We have never been afraid of what we can't see, but it sure does piss us off.


Another new baseline

>> Friday, August 1, 2014

The thing about Bug is the amount of baseline changes he has. It's off the hook and on par with severe epilepsy diagnosis, which he doesn't have.

The latest is seizing as soon as he falls asleep. I mean, within 10 minutes. He used to do that when he was 4. NOT a pattern I want to see again.

Add to that: this morning he is sitting at 3 seizures in 90 minutes. And two days ago he ended the day with 5 seizures, it's not a good baseline.

So we ask: What is different? We added Vimpat.

I am not willing to say it's the Vimpat, I am willing to say that it may be a combo of the Vimpat with the Lamictal. Those may be two medications that, when combined, hinder the sodium channel a little too much. Meeting with the good Doctor next week, so we will hold steady for now. He is acting weird as well, but there has been some sickness going around so maybe that is a contributing factor.

He does have his Hemp card and I did NOT Blog about getting that. Mostly because I was recovering from nose surgery and didn't turn on my computer. It was a hell of an experience and I will catch up on that. But for now, I am making sure his nose doesn't drip too much blood from the second seizures in the kitchen this morning. Days like today and his being able to walk really does suck.


What a Seizure looks like (Graphic Content Included)



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 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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