Tuesday, July 13, 2010

Warning: Ranting ahead.

Not a good day today. Not at all. We had the Neurologist appointment at Duke today. I had really high hopes, I felt sure that Duke (a highly respected children's hospital) would take me seriously, and want to get to the bottom on Jaymes' issues. I thought this would finally be an end to going from doctor to doctor, begging for answers. Nope. So much for that.

Jaymes woke up in a mood. His pupils were doing their thing, and I knew the explosion was coming, only question was when. Apparently, the "when" was the minute we got out of the car in the parking garage. He immediately went into screaming-flailing mode for reasons unknown. He's not afraid of hospitals, he's been begging to go for days...

Anyway, he screamed all the way through the first elevator ride. He screamed as we did the underground tunnel that went from parking garage to hospital area. He screamed in the restroom. He screamed in elevator #2. He screamed in the waiting area. Even the parents of kids that were obviously autistic looked horrified. He screamed as they took him back, but briefly stopped when they did his vitals. Not sure why he liked that so much, but I was happy to have a moment of relative quiet.

It didn't last long. We got put in the same exam room as last week. The exam room with a big roll of that paper they pull over the exam tables. Also, the exam room with the not safety proofed electrical outlets that Jaymes loves to play with.

The screaming began again, and escalated as I had to pry him from the various dangerous or destructive activities he engaged in. He screamed through the first doctor (who I guess was an underling? Intern? New doctor? No clue.) talking to me for a good 30-45 minutes. We had to yell over him, and I had to pry his teeth off my arms (Jaymes, not the doctor) and block punches. I had brought my incredible concise, detailed account of the dates/times/durations of the pupil episodes, as well as a written record of his meds, his nosebleeds, and his recent ER stuff. Also, the MRI report and the CD with the actual MRI on it. Did they read it? Apparently not, as they continually asked me questions that were answered in those four pages. i wrote it down because I knew I would not be able to remember it- and i was right. I said several times "read the papers, please!"

Eventually, the underling doc left, and went to confer with the "real" doctor. During this time, Jaymes shredded some more paper, got in another few good punches, shoved Sierra across the room at me, and hit the nifty little red emergency button on the wall. In came the nurse, looking very concerned. I apologized and told her that Jaymes got a little button-happy. Kept him away from there after that. Very embarrassing.

Anyway, the doctor came back in and asked the same questions that he would have known, in detail, with better accuracy, had he bothered to read any of it. But ok, I guess he didn't realize how hard I worked on condensing a looooong history into four pages. Whatever. The end result of this appointment... Was not much at all. He said he didn't believe at all that it was a seizure issue. He also did not sound entirely convinced the pupil thing ever even happened, because his eyes were normal at the time. Yeah, they did their thing before the appointment, and again afterward. Way to cooperate, kiddo.

So, what was recommended? For the issue that they don't think is seizures? Anti seizure meds. Because (and I quote) "He's on so many meds already, what's one more?"

At my insistence that this was more than a simple behavioral thing, he offered up a 48 hour ambulatory EEG. So they'd get the gear on his head, and send him home for 48 hours. Ok, that's do-able. He's had the gear on for a few days before, and we'd be able to at least be home. That was the best I was getting out of him.

Went back out front to check out and get the appointment for the EEG. End of September. Great. I guess until then I should just sit on him, huh?

He screamed his head off and tried to bolt for the not-very-high-not-very-substantial glass railing of the very high 3rd floor. Not sure what his plan would have been, but all I needed was a kid jumping off the 3rd floor. Ran him down, caught him, hung onto him. Tried to ignore all the people gaping at us in horror. Got done there, and Jaymes had a smelly diaper. Dragged him into the bathroom, still struggling and shrieking. I put him up on the baby changing station (thankfully he's still small enough!) and attempted to get out a clean diaper, and some wipes. He grabbed the wipes pack and threw it into the bathroom door, then threw the diaper. I strapped him down with the seat belt thing on the changing station, and wrestled through a poorly executed diaper change. Everyone in the bathroom was suitably horrified.

Got him back to the car, drove home. I put him in his room in an effort to put him down for a nap, but he didn't nap. He just screamed and wound himself up even more. He took his little fabric/wire tunnel thing apart, and wrapped the wire around his ceiling fan and turned it on. Let him come out at 4:30, so I could start getting him ready to leave for therapy at 5. Unfortunately, he was still very angry, and while I was unwrapping the wire from the ceiling fan, he got eggs out and threw them (and stomped them) all over the house. So I ran around cleaning that, and then discovered he needed his diaper changed and tried to catch Jaymes to change him. He threw some more eggs, so I cleaned that and chased him around the house till I caught him, put him on the counter to change. He threw his shoes/pants/the wipes and the clean diaper, and while I was getting those back up, he bolted again. Caught him again, I was kicked and slapped but got him on the counter. Got the nasty diaper off, got a little wiping done, then he threw everything off again and rolled across the counter with his poopy bottom. Greaaat. Finally wrestled him down to wipe him, then he bolted outside without any pants or diaper on. Caught him in the driveway and carried him inside and put on a new diaper and his pants. Could not get his shoes on, so I put him in the car, strapped him in, ran in to clean the poop off the counter. Went back out, put his shoes on, threw the hearing aids in my pocket to wrestle onto him when we got there. Get to the highway, and get a shoe in the face. He threw it, it bounced off the windshield, and smacked me in the forehead. 2nd shoe hit the back of my head. Having lost his weapons, he decided to start stealing things from Sierra, who screamed her head off at him to give her back her little spray bottle. Finally I hollered at him to give it back, got hit in the face with that as it bounced off the windshield. He sat there and yelled awhile, but eventually stopped wreaking havoc. Then I start hearing ripping noises. He shredded all the grey fabric of the ceiling of the car I've owned for all of a month (it WAS quite nice). Now it's ugly yellow foam on the ceiling. He collected up a nice pile, then rolled his window down and threw them one by one at cars behind us. Lots of pissed off people honking their horns at me. Not like I can do anything about it though. He threw some toys out too I think, not sure what all went out the window. I was "this close" to taking him to the ER and making them admit him.

I got to the therapy parking lot, and had a panic attack. Got that under some control and went in to therapy, shaking like a drug addict. Therapist reminds me this is the last OT session, she's discharging Jaymes even though (in my opinion) he's WORSE now than he was several months ago. I love the woman, and I understand why, but I wish it didn't have to be this week. Those therapy sessions keep me grounded- I know they are constant, unchanging and they keep me semi organized. Now it's all fucked up.

Drove home in a horrendous storm, tornado warning, all that good stuff. My pony was miserable in the pasture, being drowned in rain. I gave him a ton of hay to keep him semi comfortable, poor boy. He gave me pony cuddles in the rain. I love that pony, he is so wonderful.

I'm still feeling sick and depressed, and shaky. Took some meds, feel a lot calmer now, so that's something. Going to try to go to bed early, hubby will put Jaymes on the bus tomorrow, so I have relative peace until 1:30. I'm not looking forward to him coming home tomorrow. I'm almost afraid to be at home with him because he's just so difficult. It's just getting worse and worse, but nobody feels it's really appropriate to hospitalize him because no matter how aggressive and out of control he gets, he's only 35 pounds. But, as the huge MRI nurse guy told me, "that kid is freaky strong."

So I'm playing the waiting game I guess. Left the psych a message, and when they call me tomorrow (and I hope they do!) I will try and get him in ASAP to figure out what to do with him. We can't go on this way- it's too much for all of us. And really, sierra deserves to be able to feel happy and safe in her own home. She hates his fits.

I hate the wait and see, but it seems like the only option for now.


leah said...

OK, I think you qualify for having the worst. day. ever. My goodness, I can't believe that someone at a university like Duke would pass off strange pupil dilation and big swings in mood. SOMETHING physiological is going on... but some doctors have to see it to believe it. And even then, if they can't explain it, they pass it off to another doc or ignore it.

I do hope you get some answers- sending *hugs* and hopes for a much better day tomorrow!

kaies said...

I know you've probably thought of this already, but since he's on so many medications , do you think they could be interacting and causing the strange behavior? Alot of the medicines affect kids with autism differently than they affect typical kids. I'm sure you haven't added a new medication, but some times the medicine can accumulate in the body, and I'm just saying your having a hard time and that's the only thing I could think of :(