I need to pause a minute and update things here on what’s been going on with Ryan’s head.
In a matter of a month and a half, he had three episodes. We’re almost 100% sure at least one of them was a seizure….the other two however, were different than what we are used to seeing for his seizure activity.
Both times, Ryan was practically out of it….dazing and staring off. He didn’t respond right away and it took having to make physical touch with him for him to snap put of it.
One of those two instances, he would go back to dazing and stare off again. He wasn’t twitching…but was gagging…almost as it he couldn’t breathe.
The other of those two instances, his right arm was twitching and he snapped out of it almost immediately.
Two of the three resulted in an ER visit.
Since the first episode in the last two months now, we have increased his medication. After the first episode, we were in the lab for medication levels. It showed him in the 45 range. (They want him in a 70-80 range so this is only a therapeutic dose for Ryan.)
After the third episode, I questioned it and wouldn’t take no for an answer. Ryan’s medication was increased again.
Levels were taken again about a week after the second increase that month and a half and now showed to be 59…better but still not there. That’s when the nurse talked to the doc again and decided a Petscan was the next best direction to go for Ryan. That petscan is scheduled for next week…
While I had his medical information on my mind and Children’s schedulers on the phone, I went through all of the clinics and made followup appointments, and have evals scheduled for summer therapies! ENT, Eyes, Ortho, PT, OT, Speech, and have a few more to schedule while I’m at it!!
He will need new SMOs by school start next year, a dentist appointment, and I want to look into music and/or play therapy too!
Its going to be a busy month coming – starting next week – with appointments, but it will be for the health of Ryan!
Thank you for caring and keeping all of us in your thoughts and prayers as we try to come to some answers in Ryan’s medical journey. We appreciate you being here along with us on the ride. It’s been bumpy at times, and pretty smooth at others. Regardless, we’re glad you’re riding with us!