Rolling along

>> Monday, December 15, 2014

I can not begin to put into words how much I hate epilepsy. I hate the roller coaster of having a good week and then a spectacularly bad week. Of having plans that have to stay fluid because you never know if you have to cancel. Wondering what you missed that made it worse, what you did to make it better. Explaining to other children who want to play with your children what seizures are and how they may be scary but HE isn't scary. He is just a little boy. A little boy turning into a little man and while that sucks for most people anyway, it's especially horrific for people with epilepsy.

I hate the look he gives me when he is having a complex partial seizure. The look that says: make it stop. And I hate having to wait to help him to see how bad it's going to get first. I hate having a threshold that changes based on seizure activity.

Tonight is one of those changes.

The last few nights, he again, has been seizing every hour or so. Normally, we do not go for the Diastat, I just sleep next to him and wait it out. That usually lasts a week. A week of 5+ seizures a night that awaken him from slumber. A week of watching the seizures get uglier and uglier every hour. A week of watching him everytime he goes to sleep. Naps are especially bad. Why? Not just because he seizes but because the ONLY relief he gets is torn from him. When one is not sleeping well and one naps, if that nap is interrupted the cycle gets worse and the mood gets worse and bad things begin to happen.

So tonight...he has already had 3 seizures. One more and he is getting Diastat. No, I am not a health care professional but I am planning on giving my son Diastat for the second time in two weeks. I am giving it to him to stop bad things from happening and I will NOT question the decision to do so. I know him. And that's why I will help him. There is not an option here, there is only relief and the universe will hold it against me if I don't help when I can. So, I stay awake a little longer, waiting for the inevitable and trying to make things better for others.

I love you little man. I WILL make it better.


One week.

>> Tuesday, December 9, 2014

Because when we fail, we fail in spectacular ways at this house.

Bug did make it one week. But tonight threw at least part of that week into doubt.

At 10:55 he fell asleep. At 11:08, I said to Glenn: He made it! At 11:09 he had a small seizure. I swore, held him and kissed his head. He fell back asleep. And promptly had another seizure.

He did this 9 times last night. All the while, the seizure intensity was building. At 6:00am he had a 2 minute T/C and has been sleeping peacefully since.

Yesterday, he woke up kind of pensive, not very smiley and now I think: He had a night like last night the night before. I can't prove it, and I need to see what I can do to find all the camera equipment that got packed in pieces in different boxes so that I can.

I'm sore, I'm pissed and I am still thinking the Epidiolex is too high. But it's curious thing, being in an IND, there is no set doseage, only a best guess, that's what we are here to do; help them determine dosing guidelines. Everyone agrees that he is more aware and more present, we just need to get to a stable baseline. For the record, he has NEVER had a stable baseline. Just when we have a new baseline, he adapts or grows and BAM, new baseline.

So while, playing with a new medication isn't surprising, I'm still bummed as hell and need to buy christmas presents. Which, is its own special kind of glorious misery.


Not to jinx it....

>> Monday, December 8, 2014

The week before last was ugly. Every night we saw at least 5 seizures. He would fall asleep and within 10 minutes a seizure would awaken him. It would happen every time he fell asleep until about 1:00am when it would slow down.  It was a nightmare that progressed.

I told Glenn his Epidiolex was too high (no pun), and wanted to reduce it. He wasn't so sure and wanted to wait to see if Bug was getting sick.

By Monday, December 1st, I was done waiting.

Here's where my arrogance comes into play: I have NEVER been wrong about Bug and his medications. I know within 30 days if we need to give it more time. EVERY time I have waited longer than that...things got worse. So that week, I was not going to wait any longer.

Monday night he needed Diastat. After the 7th seizure in 4 hours, I didn't hesitate retrieving the valium. I gave it to him and he slept peacefully all night. I know, because he slept between Glenn and I.

By Tuesday we were watching him closely and I backed him down to 3ml 2 times a day.

Wednesday we awaited the seizures at night. They never came.

Thursday, Friday, Saturday and Sunday. Still nothing. Here we are, a full week later and still we have not seen a seizure. By writing this I am almost guaranteeing he will seize. It's just what happens but 10 hours he will have hit a new 6 year record. That's right. 6 years! Since he started seizing every day, only Lamictal introduction 6 years ago reduced his seizures as much.

I'm holding my breath. After 11:00pm tonight, I will breathe because then I can say: He made it a week and everything after that is gravy.

He is following direction and showing preference, now if he can only TELL us he doesn't actually like noodles...that would be something!


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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