Tuesday, November 13, 2012

So many seizures

Oliver has now reached his maximum daily dose of Keppra and still having seizures! Every day. He's had at least 7 today. The nurse that works with his neurologist said over the phone that we're "walking the line" between controlling the seizures and sedating him. Well he's not sleeping all day and he's still having seizures, so we need to do something! Don't tell me those are his only options, seizures or sedation. There are many seizure medicines out there. She wants us to try to record a seizure and email it to her. That is much easier suggested than done, but we are trying.

Oliver is awake most of the day until he takes a 20 minute catnap and wakes up having seizures and we end up needing to use Valium and sometimes with morphine to stop the seizure cycle, THEN he is tired. Between the seizures themselves and the medicines, he is out for at least 2 hours afterwards.

We need to get these under control!

To watch his tiny 27 pound body twist and contort, to watch tears stream down his face and his lips turn blue, to hear his screaming and whimpering afterwards. It's pure torture, what I wouldn't do to take his pain away.

He had a few seizures at PT today, and I tried to catch them on video but I only ended up getting the end and aftermath of one. I won't post a video of his seizure, it's too upsetting, but here is what a still photo looks like:
(clicking play won't work, it's a screen shot)

His hands and feet twist inwards, you can see his lips starting to turn purple. He doesn't breathe during his seizures.

Here is a video of the aftermath of the seizure:


  1. Kate and Chris, You don't know me, but I have been following your story from the beginning. My heart breaks for you both and especially for little Ollie. I pray for comfort and peace everyday for Ollie. He is such a beautiful, brave little boy, it is so unfair that he is in such pain and a prisoner of this horrific disease. Wishing you strength and peace beyond understanding as you continue this journey with your amazing little boy. You are all in my thoughts and prayers... and in my heart always.

  2. My eyes won't stop crying and my heart is breaking for little Ollie and the cruelty of MLD. No one should ever have to go through something so awful, let alone an innocent little boy. You two are amazingly strong parents. I pray you find peace in all of this one day.

  3. You are all so brave. I can't even imagine what it must be like to see little Ollie like this everyday. Please continue to stay strong. You will get through this.