Thursday, July 28, 2011



It was a very long day.

It started out with Z throwing up twice (we think it was his stratterra on an empty stomach). We got the hospital fine at the correct time and proceeded to sit and wait for almost 2 hours. I realize places like this have to be flexible, but man, it sucked. Eventually, I went up to the admitting person and asked how much longer because Z was getting antsy. I told her he was autistic and would be calmer if I could give him a time. That I knew they didn't know exactly, but even a worst case scenario would give me something to work with him on.

Those words were like magic. She got on the phone and a Child Life Specialist (someone who is there to help kids like Z) came out with some sensory stuff and a visual story about the MRI. They took us straight back and found us a room with a DVD player. She also went to find people to make sure things kept moving.

I wish I would have said something about his autism sooner! On the other hand, I'm always amazed that someone didn't flag his file somehow to let them know he had autism. I'm sure Mr mentioned it (though he may have assumed they already knew like I had). Apparently, Hasbro has programs and social stories and the like in place to bring the kids in before their test to help them prepare. I would have loved to have known that ahead of time!

Anyway, after another hour (it's now close to 1:00 pm, we got there at 10:00), and two more nurse conversations (one of which explained everything to us beautifully), they finally came in to give Z versed (up the nose, which he hated). Within 5 minutes, the kid was OUT. Not entirely asleep, I could see/feel he was aware of things but unable/unwilling to move or anything.

They came back to start his IV. And foolish woman that I am, I watched. I was holding his arm (he was aware enough to start jerking away from the IV placement-they did put the numbing cream on first) and watched them place the needle. Now, I have a needle thing (I think most do) and watching them move that needle around under his skin placing it about had me either puke or pass out. When they left, I started crying and Mr and to tell me to pull it together.

Mr had to carry Z to the MRI (Z was that out of it) and we had to stand and wait for the doctor to come in. Mr got a real workout! 66 lbs of dead weight. Z was semi-awake, groggy and out of it but with it enough to try and peel away the stuff holding his IV and trying to take off his ID bracelet. I was trying to keep his hands still and not jostle him too much lest Mr lose his grip.

Doctor shows up, we put him on the table and they start to give him the iv drugs. First one was lidocaine to numb the veins. Z did ok with that. Then the sedative (which I guess burns going in) and Z started fighting us. The 2 techs and I had to hold him down and keep him from ripping out the iv. it was kind of funny to watch, one minute he was fighting like we were trying to skin him alive and a second later he was out for the count.

The MRI took about an hour. Mr and I got to stay in the room with him the whole time, not that he woke up or anything (damn but it's loud in there). The Tech initially asked if we wanted to try for him to stay away (but maybe on versed) but we looked at her as if she were insane. We definitely made the right choice, no way would Z have made it through the noise and stayed still.

Afterward, he slept for about an hour or so. He would wake up, then doze off again. Mr said the first words out of Z's mouth would be "mommy". I said it would be "library". I won Wink

Z was groggy and a bit of a drunkard for another 1/2 hour or so. We left about 4:00 (we had been there since 10:00) and he still hadn't eaten much. By the time we got to the first library, he was pretty alert. By the second library, he was wide awake and active and by the time we got home (about 6:30) he was back to himself, though a bit on the hyper side (we suspect he didn't get a full dose of his stratterra that morning).

He eventually fell asleep around 11:00 that night and slept until almost 7:00 this morning (his normal time). He was hungry, awake, playing and ready to go back to camp.

Tonight, Mr and I are going to see harry potter as a treat to us (and to Z, since his aide is going to sit with him and he adores her).

We get the results on Monday. I'm glad it's over and don't want to do it again if I can help it!

Friday, June 10, 2011

The Latest IEP

And things are going fine. I'm constantly amazed at how wonderful this school is. Nothing is perfect, but they work with us, which is awesome.

Z's moving on to 2nd grade next year. We have a tentative placement for him, which can change but I think they will try very hard with getting him in with this teacher. They seemed to be preparing us for the changes-Z is going to be going at a different pace with different lessons (though still in the classroom). It sounds like the differences between him and his classmates are going to be growing in the coming years. It's tough to think about, and I'm sure it is going to be even tougher to face but that's the way things go.

They think he may need some PT since he can't bend over and touch his toes; teacher/aide think his back/stomach muscles are tight and he needs some sort of stretching routine. He had core strength issues when he was younger, but I had thought he was caught up by now. It's not as difficult to hear some of this stuff as it use to be. I'm either numb or getting accustomed to it or just too damn tired (I'm on the road again and am hoping to be home later).

On the bittersweet side, his ST is pretty happy about some progress he has made with respect to emotions. I'm not sure what the technique is called, but she has him draw pictures of faces with emotions and then has him write how he is feeling and why. Either today or yesterday he told her he was mad because mom was gone. So, two thumbs up for communication, two shots of tequila for mom to deal with the guilt. I hope travel for work goes down soon (three trips in 2 weeks). I know traveling is part of my job, but I want to stay local for a month or so if I can (except for that vacation trip, of course since he will be with me).

His new meds seem to be going well, but we still haven't gotten anywhere near full dosage, so we wouldn't expect to see any changes anytime soon.

Thanks for reading! Go get yourself a cookie for your effort Wink

What's going on with us....

I've been horrible about keeping things up here. I would like to blame my being busy (and I am), but I think it's more laziness than anything.

A lot's been happening in the past few months. Back in January/February, Monster's teacher and aide noticed some troubling behavior. It seemed that he was spacing out (for want of a better word) and they couldn't regain his attention as usual. Once or twice, the aide was very concerned since after Monster "woke up" he seemed disoriented and tired. They did some googling, and seemed to think these episodes were like absence seizures. So they talked to us, we talked to his pediatrician (and some folks around here) and eventually found a pediatric neurologist in Massachusetts. We went in April for a visit and exam (Monster did great)and scheduled an EEG.

The EEG was a bit of a challenge for all of us. First off, Monster doesn't like things on his head. He's gotten a lot better and will wear hats occasionally and knows he must wear his helmet to ride a horse or his bicycle. But he hates having his hair washed or any goop in hair. Getting all of the wires hooked up was anything but fun. Mr and I had to hold his hands, his legs and hold him down (with the aid of a technician or nurse). I must say, however, the lady that wired him up was FAST!

The EEG took about 20 or so minutes. Since Monster wanted to immediately rip his wires off (they were stuck on with a glue-like gummy substance), we had to hold his hands, or at least keep them from being able to reach his head. One thing that really helped was having a timer on so he knew exactly how long he had to keep the wires glued to his noggin. I warned the tech that he wouldn't tolerate the wires 1 second beyond the timer, so we settled upon 30 minutes on the timer to give her plenty of time.

Monster got to play with Mr's phone, while I got to hold the timer. Monster checked that timer about every second or so, but it kept him mostly calm.

The EEG itself was interesting. He just sat there and played for a while (most of the time actually). But they also tried to induce whatever by having him blow a pinwheel. He got tired of that pretty fast, but hung in there and did what he needed. Then they flashed strobe lights around him. He really seemed to enjoy looking at the strobe lights a lot. And, voila, it was over and he got to rip off the wires. His hair looked pretty wacky afterwards, though ;) (and you can tell how thrilled he was).

About two or three weeks later, we got the results back. It seems as though Monster has increased electrical activity in the back, right part of his brain. According to his neurologist, this is the part that deals with his cognitive function and attention/focus. The Doc said that they use to not treat for this, but with the possible regression noted by Monster's teachers, he recommended that we start Z on anti-convulsants. Scary for the parents, but it is what it is, right? Right? The medication is Lamictal ( We won't be at full dosage for a while and we likely won't be able to determine if it has any impact until the fall.

In addition, the Doc wants to do an MRI to check for any structural abnormalities. Ok, another test, we can do this. However, we need to pull Monster's spacers out. Spacers that need to be there to prevent his needing braces when he gets older because of the teeth we had to pull (why do I feel like we are being punished for not getting him to the dentist sooner?). So we had the spacers yanked (actually, Z had removed 2 of them on his own, so they only had to remove 2 of them), which was also tough on Z since he had a spacer thingie used to keep his mouth open. He was a bit freaked out by the whole thing. His dentist wants to try and put them back in next fall (without the surgery part this time). YIKES!

Well, that's it for the amazingly electrical brain of the Monster. Next up, his latest IEP meeting (next post).