Friday, June 30, 2017

Seizures continue

Unfortunately, Ryan had 2 more seizures since my last post. He had another one at his special needs school last Friday and then one this past Wednesday first thing in the morning. Neither one was very long, and neither one required a 911 call, Diastat medicine, or a hospital visit. The one at school was about 60 seconds long and the one at home lasted about 4 minutes.

Video of Ryan's seizure at home on Wednesday, 6/28/17.

As you watch the video, it's hard to even tell that he's having a seizure. I noticed that his movements and demeanor seemed a little off (others that don't know him as well would probably not even notice) and picked him up out of his bed and moved him onto my bed. Picking him up is the best way to confirm the seizure activity because he displays no head control. I had Thomas pick him up during this video to show what I mean by that.

Ryan was fine all the other days in between the two seizures and even on the days when it happened, afterwards, he was totally normal and happy and in a good mood.

After each seizure, I would call into his neurologist's office, let them know what happened and then wait for a call back to let me know if we needed to up his med dosage again or if there were any other instructions. In the span of 2 weeks, on his Keppra medicine, we went from 1.6 ml to 2 ml, to 2.6 and now to 3 ml. We're still not at the max of what he can safely take but it feels like it's been a huge jump.

After Wednesday's seizure, when I called the neuro office, I said that I felt like it was time for us to come in for a visit. I felt like after having 4 seizures within a week and a half, my concern level was way up and it was time for him to be seen. Shortly thereafter, we got an appointment for this morning (Friday). So Thomas and I took Ryan in to see Dr. Taft this morning.

Basically, there wasn't any earth shattering advice or revelations that came out of the appointment, but Dr. Taft did said that he wanted us to go ahead and bump up the Keppra dosage to 3 ml, as I noted above, and he ordered blood work to be done so he could test how quickly Ryan is metabolizing his medicine, which will help to make better, more educated, dosage/med suggestions. He was encouraged by how well Ryan looked and by the fact that we aren't seeing any major changes in him, despite the four seizures. It's like other than those few minutes that the seizure is happening, he's been totally fine.

I pray that the increased dosage will keep Ryan seizure-free for a long while. I also pray that the blood work that we'll have done next week will provide Dr. Taft with some good knowledge to help us move forward in Ryan's medical plans and decisions.

Pictures from the appointment this morning:


  1. So many prayers coming your way. I love you so much.

  2. How did I miss this?!?! Lots of love and prayers for our Ry and yall!