Thursday, February 14

Is this a Seizure? Is this connected to Autism?

I don't know what this is, has anyone else had experiences with episodes like this?

Tristian will be nodding off, we'll be trying to wake him up for something, or he'll be dead asleep, rarely he'll be walking in a somehow purposeful but confused manner- reminds me of like he knows where he's going but not sure why. Today he was taking a nap because he's sick. He'll begin to whimper and moan- he says Mom a lot mixed into the whimpering and moans. It's like he's crying, but it's not how he cries. He can sit up but will not make eye contact. He can open his eyes fully, but the norm is to have them about half open. He can respond to being told to do something, but not in a fully functioning way like if he was normally awake. He has extreme sensory issues. Doens't want to touch or hold anything, touching him will make him extremely agitated and do the crying sound more (but is also part of how to get him out of the episode). He will not eat or drink, will get more agitated the more you try to make him (which makes this particularly bad as it happens more when he's sick when he NEEDS to be drinking). You can try to give him drink and he will forcefully close up him mouth. If you force fluid into his mouth he will spit it back out while moaning. However drinking is also part of how I've learned to pull him out of the episode. You can get him to stand up and walk, but he acts confused and disoriented and will start and stop and cry harder or less throughout any movement. As he gets farther into pulling out of the episode it becomes harder to tell if he's still in it (although that's a little complicated, I'll explain why in a minute). He'll talk to you, start to drink a little (something sweet like juice from a straw). The only way I've found to get him out of the episodes with any sort of speed (still talking half and hour to forty five minutes or longer) is this routine.

At first you don't realize that he's in the episode. He'll start whining a little, if he's asleep I'll think he's having a bad dream and go to check on him. If I'm trying to get him up for something I'll think he doesn't want to get up yet. If he's walking around is normally the quickest I realize what's going on. Normally it takes a few minutes to realize that something's off. Once I realize I start talking to him, nonstop. Loud and insistent, "Tristian, you have to wake up." "Come one honey, you have to be awake." I'll touch him over and over on his hands and his face. Every touch he responds to like you are hitting him. I'll pat his cheeks while telling him he has to look at me, he has to wake up and he'll howl like I'm slapping him. I'll take his hand while telling him he has to stand up and he'll cry like I'm crushing his fingers.

You can tell him to do things and sometimes it's ignored, sometimes he responds with blinding speed, sometimes he responds slowly but does respond. This episode today I said, "Tristian you have to look at me." and he whipped his head around (I was at the side of the bed) to face me with lightning speed but his eyes stay half open, his face is towards me but there's no eye contact. I asked him to open his eyes, slower that time, took a moment to process- he opened his eyes but they are looking to the side, not at me really, no eye contact. I fell into the old mantra I used for years before Tristian would make eye contact on a normal basis (Tristian has symptoms of Autism or Aspergers but no diagnosis yet), "Tristian eye contact, look me in the eyes." Hands cupped around his face creating tunnel vision. Nothing, no response. I kept talking, kept touching, got a drink for him- total no go, runs down his front. Always a bust that early, but I always try. Suddenly he starts responding. "Tristian, were you dreaming? Tristian are you-" "A little bit." Crystal clear, sounds like Tristian. "Tristian are you ok?" whimpering again.

I go run the bath. I know I can get him in the bath now with less fuss (try it earlier and it's not a pleasant experience). Baths seem to help, seem to speed up him coming back to himself. I go back into the room and he's standing in the middle of the room looking a little blank. "Tristian?" "Mom?" "Tristian are you ok now?" "Yes." Maybe he's ok, maybe it's over. Whimpering, but he will be doing the weird crying thing for a half hour or so even after it's over. He doesn't seem to notice and it slowly stops. "Tristian do you want a drink?" He turns towards the bed, towards where I put the cup. I grab the cup and take his hand and he starts to moan. Not done after all. I start talking to him again. "You're not awake yet. You have to wake up. Do you want to take a bath?" I don't know why I say not awake yet, I know it's not night terrors, that ship long since sailed in my mind. Just habit I guess.

He walks into the bathroom with me. I get him undressed, he whimpers and moan the whole time like every touch is bruising. I pick him up and put him in the bath. He looks confused for a moment, kneeling then folds down onto himself.  Moaning. That's not normal, the moaning is, but not the folding onto himself. "Tristian, what's wrong?" "Mom." "Tristian, are you ok." "It's cold Mom." I feel the water, whoops, not as warm as I thought I'd set it. I get it warm and he sits back up. The last comment has sounded so normal. "Tristian are you awake now?" "Yes." "Can you drink something? You need to drink." "Ok" I set the cup in his hands with straw. He starts to cry harder again. Not done. "Tristian you have to drink" He lets the cup fall through his hands into the water. Thank God for buoyancy. I grab the cup back up and put it back in his hands, wrapping them around it in a normal hold. "Tristian you have to drink. You're sick, you can't get dehydrated." Just babbling as I put the straw to his lips while he's crying. I've learned you have to slip the straw in when he doesn't notice. "Tristian drink, drink through the straw." If you talk to him and tell him over and over to drink he will, slowly, through a straw only, and as he does he wakes up a little more. He'll talk more. "Mom, how much do I have to drink?" Longest sentence yet, "You have to drink all of it." More crying and moaning, drops the cup again. Pick up, repeat.

By the time he finishes drinking a whole cup he is normally mostly himself. He'll want to play in the bath and he'll talk like normal. But he continues to cry. No more moaning, but that weird half crying half hiccuping sound almost. Sorta like after a child has screamed for a long time that gasping sound, but it's not that, there's no gasp, just the hard sound puncuating a cry. I think the cry might sound normal without that sound cutting in every few split seconds. He'll continue to seem a little out of it for a bit, half an hour or so. Eventually the cry will stop and very suddenly he will be normal Tristian again. Completely and totally there, no longer disoriented. It's a switch. One moment he'll seem a little off and dazed still. The next he'll start chatting and running around like normal. It'll be over. Everything will be fine. I'll smile and give a sigh of relief and not think about it again... until next time.

The worst part is that today I realized we have never mentioned these episodes to his psychologist. We've never thought of it. They happen so rarely now, but they do still happen with some regularity (few times a monthish) I can't believe that we have never thought to mention it to his psychologist. It just hit me after the one today. I finally had him awake and normal again in the bath and I let Trace get in to play with him then just needed a moment so walked right outside the door into the hallway and leaned my head against the wall for a moment. As my head touched the cold wall it just hit me like a bolt of lightening that neither of us have ever even thought about telling Tristian's psychologist about these episodes.

I don't know why, it's like you forget about it unless you are dealing with it directly. Trevor has dealt with it too. Trevor has even been the one to find him twice walking around confused. We never discuss it, never have, and it's not because we are in denial. For some reason I have never thought about it this much before right here right now typing this. I bet when I bring it up to Trevor tonight he's going to have a similar reaction- "Why haven't we realized before?" I think maybe with everything else we deal with that is so obviously important gotta figure out now that there just wasn't anything left over to even consider this. Idk. I can't explain, I have no idea why it's never occurred to either of us that this might be something we need to deal with, too. Maybe it's just been such a constant and slowly grown into that we never stopped to think about it. Not until it got less constant as he got less sick.

I originally thought it was night terrors when he was younger and was just starting to notice him doing it, but at this point it doesn't fit the night terrors description. Ever since we were able to make the differentiation (I assume it happened before too, but you wouldn't really notice with a toddler or baby) Tristian has done this. At least once or twice every time he gets sick (which is rarer then it use to be) and sometimes randomly when he isn't. It's not always related to sleep, but does seem to occur with sleep more. Sometimes he will seem tired during the middle of the day, he'll seem to be nodding off (but not actually gone to sleep) if you try to get him alert again, or even try to get him into bed, he'll respond in this way. Rarely he'll be walking or moving around but you'll notice he's not acting right, the walk seems off, he doesn't seem focused- and it will be this. So I don't know if the episodes are causing the sleepiness in these cases or not. I would say that 75% of the cases occur when he has already been asleep (for the night or for nap), and the other 25% occur during a time when he should have been alert but seemed unusually sleepy, was walking around disorientedly, or was nodding off to sleep while reading or watching something.

The other thing that hit me just now, as I was reading back over this and thinking about Tristian in the middle of an episode.... I did clinicals for my cna at institute here in town for severe autistic children. If Tristian acted all the time like he does during these episodes. The sensory issues, the moaning, the no eye contact, the issues eating..... I'd never thought about that. Is this somehow related to the autism? Are these episodes what he would have been like it I hadn't refused to let it happen? It I hadn't taught him every step of the way and forced him every step of the way towards more normal behavior?

So many of our family members look at Trisitan and see a mostly normal child that is just a little... off. I can tell they think I'm exaggerating when I try to explain what it took to get him here. Even if they remember some of it they are sure it wasn't really that bad. They don't remember that Tristian went from a normal little baby to not hardly moving for two months. They don't remember the months of us holding his bottles and feeding him because he wouldn't. They weren't there for the hours of trying to get him to hold a cup, any cup. I took so many pictures of the first time he held a cup by himself and ate at a table. Then it didn't happen again for months. My mom once joked that he looked like a gerbil, my 2 years old drinking from a sippy cup that I was hold up at an angle before running back off to play again. It took me YEARS of habitually putting my hands around his face and forcing eye contact before he started making eye contact with people like it was normal. Holidays 2011 something clicked and he started making unprompted eye contact. I still have to try not to cry when I talk (or type apparently) about that. We had to turn hugs and kisses into a social rule to get him use to touch. You touch him now and he doesn't shy away. I still remember the first time he let one of my best friends hug him. Her daughter is five months younger then him and they've done play dates their whole life, he's known her mom his whole life, but he never let her hug him until last spring.

I'm sorry, I'm just rambling at this point. We need to discuss this with Tristian's psychologist. But until then, has anyone else experienced anything like this?

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