Hi,
I just want to send out a quick note to let you know what’s been happening.
On Thursday night, May 5, Mason started having a seizure at supper time, and it kept going on, - not eating, staring, blinking, drooling etc. After a few minutes, I felt his forehead and noticed it was warm. I gave him Tylenol, he continued the seizure. His fever kept going up slowly. He seemed to have moments where it looked like it was ending. After a while, I phoned the neurologist on call at Childrens Hospital and he recommended that we call an ambulance, so we did. Because this was something we had not experienced before, and we didn’t want to wait at the ER, and we did not know what could happen between home and the hospital, the ambulance was the right choice. We got in very quickly. They put a saline IV in and eventually the fluids and another dose of Tylenol finally started to bring Mason’s temperature down. finally he fell asleep at 11 pm. (the seizure kept him awake). This is called non-convulsive status epilepticus. The definition is a seizure that does not stop. Mason’s lasted for 5 hours. He slept a lot the next day.
After talking to the nurse and doctor over the next few days, they called Mason in for the following Wednesday to train me on a rectally administered drug to stop the seizures at home. Normally Valium or Ativan (for you nurses out there) are used, but they don’t work on Mason. We don’t know if this one would either, but we’ll try.
Next week I’ll be training the teachers and TA’s at school in what to look for and when to call me or an ambulance. We have something in place already, but not for this type of seizure.
Tomorrow morning, Friday, Mason will be in the local hospital for dental work. He won’t let the dentist in, so he will be put to sleep for cleaning and suspected cavities.
June 6 will begin a new round of testing for Mason. Intensive Monitoring (an EEG – 30 or so wires attached to his head – while being monitored on video) the room is booked for 5 days, but we expect Mason to give ample information within 24 hours, for the number of seizures he has.
He will also have an MRI hopefully during our stay there, as well.
The Dr will also be investigating chromosome deficiencies.
After all that, the information will indicate if he is a candidate for brain surgery. A different kind than we looked into a few years ago. We will be considering Corpus Callosotomy, which would separate the communication between the left and right brain. There is an 80% chance of eliminating or greatly reducing Mason’s drop seizures, which he has 2 – 5 of each day. Currently he wears a helmet nearly all the time.
That’s all the basic information of what’s going on here.
It has not been an easy time lately in general with the seizures on the rise, as well as the additional emergency issues and preparing for future emergencies. I’m tired from what has been going on (although a short visit from my mom, new step-dad, and former neighbors in the middle of all this was a perk!) an get tired thinking about what is coming up, never mind all the unknown worries. Although I know that all of it is in the control of our Heavenly Father, and that knowledge does not sway at all, it is emotionally and physically draining.
I just ask that you will remember us often in your prayers often, especially over the next couple of months. I’ll keep you up to date on what is going on.
Thanks, love Shirley
