Before Ty had his big seizure he had been stuttering. It seemed to kind of come and go and I didn't know exactly what was going on. I made a comment to his pediatrician but we had come to the conclusion that it was not a true stutter and so we didn’t make a big deal out of it.
After his seizure it kind took a back burner to real life. Nothing made it worse, but it also didn’t get better either. Every once in a while we would notice it was gone and then it would come back full force.
After his “event” ( aka Our neurologist, that isn’t our neurologist any more, said that she isn’t convinced it was a seizure so we are calling it an event) in June and our EEG that was not awesome we got a second ( before the first) opinion. Dr. Bernes was great. Agreed that we should proceed and figure out what was going on. Get a look at his brain and see where to go from there and what was going on.
Fast forward to the EEG this past week.
We checked in on Tuesday. We were asked to do all we could to just get him to talk to us. I read 35 books. Played a million and one games with him and did all I could to have his stuttering caught on tape. When we were finally able to settle in for the night after a hard game of throw the snacks and dance party, and get some sleep.
Wednesday the Doc on call came in and said that Ty was having interictal activity in his brain. Basically 65 percent of his night is spent in seizure “ interictal” activity. It is effecting his speech. It COULD be effecting his cognitive development but they don’t know. But they need to see if they can get his activity in the night down, but in order to do that they need to sedate him. Like heavily sedate him. Like stick in an IV in case the meds cause respiratory distress, sedation. I was a mess. I am pretty sure that I called Dallas sobbing a few times. And I might or might not have yelled at the poor handsome, skinny pants wearing student. I might or might not have said bad words when the door was shut only to remember they were filming EVERY THING WE DID...And we might or might not have made jokes about bums and crap a few times too. But the tears.. holy CRAP.
I tried to explain to Tyler about an IV. So the nurse sent in the child life specialist and Ty just kind of looked at her. She was talking to me and asked me if I had a degree or worked with kids because I was really “good” with him. I thought,”um he is an extension of me! Of Course we are good together” But I explained I did have a degree and that it was in child life specialties. She said well you have it covered and left. I was a bit stunned.
The IV class didn’t do much for him. He was one pissed off dude. They missed the first one and got the next one. When we got the meds in him he asked if he could GET OUT OF BED. After 3 stories, me laying with him and then finally telling him he was all done and holding his face, he fell asleep. He was OUT.
I got ready for bed pretty fast after that and was out pretty quick as well but when half the floor comes in because your son is taking off his IV in his sleep AND his oxygen was low low. He was fine and asleep and his mom... she was having a panic attack.
The next morning we got ready to pack our bag. They said no matter what we could go home but it was going to depend WHAT we went home with.
The sedation worked and Ty is now home on a large dose of valium. It has decreased his interictal activity to 35 percent of the night. We have seen a huge improvement.
HE IS AGGRESSIVE. He is calming down a little but he is tired so his sensory processing is far and above what we really are use to. Grayson is dealing with us having to have him passed around and so he lashes out. We are hoping we can get back to a new normal SOON!