June 01, 2010

The Bitter Taste of Diastat

I will never forget talking to a mom whose child has severe epilepsy and constant seizures, and her surprise that we had never given Evan an emergency medicine like Diastat to stop a seizure. Her exact words were, "We use Diastat like candy." Those words have hung with me since I heard them. Here we were, two moms with the common bond of having a child with epilepsy and at the same time, worlds apart. She and I are still worlds apart but I am reminded of that conversation now and as I struggle with my desire for Evan to regain seizure control, I know she has those same wishes for her child.

We had to give Evan Diastat three times last month and I can only imagine what it must be like to think of this medicine as candy. Each time we gave him Diastat was the same: we hear a noise coming from Evan's bedroom and find him having a seizure. His eyes are wide open, but he seems to look through us and he's stiff and shaking. We get ready to give him the Diastat, a gel in a pre-filed syringe that is given rectally, and after administering it we wait for the medicine to surge through his bloodstream and quiet his brain. One minute passes while we sit watching, waiting while Evan seizes. Another minute goes by and maybe another as we sit helpless watching the ugliness of this disease. Finally it's over and Evan slips into a deep sleep. I want to throw up but don't. It's over. I cry.

I know that as horrible as it is to see Evan go through this, I am thankful for the Diastat. I understand the reference to candy. I still can't relate to thinking of it that way, but f I had to choose between a chocolate bar and Diastat, I'd choose the Diastat.


Mary said...

Oh, Lisa! Hugs. I cry with you.

I'm so glad we have the advantages of modern medicine, but I really wish we didn't need them.

Wish there were something I could do to make it all better. If there's anything you think of that I could do to make it easier, please call!

Love to you all

Mama Lisa said...

Thanks Mary, we appreciate that. We're just hoping to get his meds leveled out and put this all behind us!


Anonymous said...


I am so very sorry to hear about Evan's recent seizures.:(

I read your post, experienced your nausea, felt the shakiness of an adrenaline rush as my eyes began to smart, and I am left with a pit in my stomach even as I write.

I hate the helplessness of watching your child seize and will be praying you find the right med combination to stop them in their tracks.

Hang in there,
Kelly O'Melia

Mama Lisa said...

Thank you Kelly! He been doing this every weekend for a few weeks so I'm hoping the weekend we'll see an end to the cycle! My fingers are perpetually crossed!