Monday, May 31, 2010

Well, it can't get much worse, so it'll get better soon- right?

Jaymes' eyes are still doing strange things, and his behavior and attitude are not doing so great either. He has his EEG last Friday, and his one pupil was dilated during the test, then went back to normal about halfway through, so if there's anything seizure-like, hopefully we will see it.

It has been an exhausting couple of weeks, and with the way Jaymes has been lately, I'm about his only fan right now... And I'm getting close to hitting my limit. Hoping the weather will hold up tomorrow for a trail ride with friends so my near-to-exploding head can hopefully release the pent up "ARRRGGGHHHH" in there and I can go back to being the patient mommy I usually am. Let's just say today's spitting on the cart and floor at Target pushed me to the limit. I need my horsie time to regain some sanity!

Thursday, May 13, 2010

Why Grandmother, what big eyes you have...

I'm a day late on this topic, mostly because I have been totally exhausted, but I figure a day late is better than a month late, right?

We have a lovely trip to the ER the other night with Jaymes, yet another one of those "sit for 6 hours and learn NOTHING" visits. Long story short, we had been at therapy. Jaymes had finished PT and was wreaking havoc in the waiting room waiting for his OT session. I asked him to not move the table, he ignored me, so I went and picked him up and made him sit with me. He went into one of his rage modes (in keeping with the weird behavior for the last few weeks) and bit me once, then punched me until I held his hands so he couldn't do it anymore. He screamed a few times, then curled up and went to sleep in my lap. He woke up a little bit later, when his therapist came out to get him. She noticed (his back was to me, so I didn't see it) that his eyes looked funny- one pupil was tiny and the other was huge. We kind of watched him during the session, and she didn't do any of the usual high energy stuff like the trampoline or ball pit. He was a lot calmer than usual, and he wrote some very nice "m's" A the end of his session, his eyes were still like that, so she suggested I call the doctor and see what they thought. Called Dr. Klinepeter's after hours answering service because Jaymes had had an appointment that morning with his physician's assistant (and his eyes had been normal then). He told me to take him to the ER to be seen, because his eyes changing like that for no apparent reason, coupled with his strange behavior lately, was cause for concern.

So we sat for about six hours while doctor after doctor came in and said (and I quote) "I'm stumped." Each doctor told us the same thing, that they would send in someone else. Finally they said that because he would have to be sedated, diagnostics like an MRI/scan of any kind would be out at that time of night, and that there was nothing anyone could do.

Jaymes was very much not himself until about an hour before he was discharged from the ER. He sat with me, was absolutely panicked if anyone looked at him, and refused to eat or drink. I know that stuff is kind of minor, but he really wasn't himself. The doctors had to examine him while he shrieked in panic. Not fun.

Anyway, they did an EKG, and his heart is fine (thank god!) and they'll schedule him for an EEG to see if there is any seizure activity. But at this point, nobody knows why his eyes changed, and there isn't really much interest (doctor-wise) in pursuing it.

This is the 2nd time Jaymes' pupils have done this, the first time was in 2008, when he passed out during a walk. When he woke up, his pupils were different. Nobody knew what caused that, either. I am SO frustrated that these doctors can't figure out what's going on with him, and that they don't even seem concerned. I'm sorry, but his pupils doing that plus the total change in personality in the last few weeks REALLY bothers me. That cannot be normal.

Anyway, we're watching him now, hopefully nothing happens and he'll go back to normal for good. His eyes are normal again at least.

Saturday, May 8, 2010

A turn for the worse...

Well, I don't know what is going on with Jaymes lately. He is becoming more and more violent, and more and more angry. I don't know if it's the new (not new anymore) meds, or what. Anyone ever heard of kids with autism getting really aggressive on Abilify?

After reading a post on Squid's blog about her son's bout with Abilify, I really think it must be the meds. But whatever it is, it is out of control and it needs to stop.

Every day Jaymes is angrier and more aggressive. Yesterday I wouldn't let him knock over the slide, and instead of losing interest like he would have done in the past, he stood them and bit me. He also slapped, kicked, and scratched hard enough to draw blood. I don't really know how to respond to this, my thought was to stand there and ignore it and let him wear himself out. Problem was, he was really hurting me and I couldn't just ignore it because it was too painful to pretend it wasn't happening.

This is not Jaymes. He has never been aggressive, especially towards myself. He's been known to bite in the midst of a very very bad meltdown, but has never pursued someone around the yard attacking them.

Every time he gets angry, everything in sight gets hurled. He smashes things against trees, he breaks things, he throws toys at his sister, he beats the dogs. He screams so long and loud he turns purple. It's terrifying. If he were a teen, we would be in danger of him hurting himself or us. Thank god he's tiny still. We have got to get him under control though, before he is big enough to really hurt someone.

The plan is to call the psychiatrist Monday, and get him in ASAP to be seen and get this medication stuff figured out. I know that originally, when I'd called to say that Jaymes had been more hyperactive and more irritable, the psych had said she'd never heard of a reaction like that with Abilify... However that post on Squid's blog could be copied and pasted here, with changes to the names and places involved and it would describe what we're going through with Jaymes. I can't imagine that's just a coincidence.

Anyway, here's to hoping everyone survives the weekend with as few injuries as possible. Send happy thoughts out to Jaymes- he needs them.

Friday, May 7, 2010

So what about Sierra?

Jaymes has been having a very hard time of things lately (at least at home) and I have noticed that Sierra has some definite opinions about some of the situations we find ourselves in when we're out of the house.

I don't know whether it is his "new" (meaning not really new anymore, but still...) meds making him like this, or a stage, or the phase of the moon or whatever... But it sure isn't fun. I've never seen the little guy so angry. Everything sets him off. I told him to take a time out the other day because he sprayed Sierra with the hose, and the result of my time out was an all out meltdown from Jaymes. He threw everything within reach as hard as he could, he screamed at the top of his lungs. He kicked the dog, and tried to punch her too. He then ran around the yard throwing everything he could find. He turned purple with rage. It's insane. It's so not my Jaymes.

At Walmart, he sat in the shopping cart squealing loudly, then just randomly got angry and started slamming his stuffed bunny's face against the side of the cart. Then he went back to repeating "yo yo yo yo yo" loudly. A few seconds later he was angry again, and grabbed a lemon from the basket we were walking past and hurled it at an old lady. The old lady was not amused, by the way.

We are reaching a point of not being sure if we can get him out of the house much more. He is so angry, and he is so active and loud. I worry that he will hurt himself or someone else when he is like this. The odd thing is that he doesn't do this at school. At school he is the happy-go-lucky little guy I know and love. Then he gets home and starts attacking my husband (mostly Jason, more than myself or Si-Si) by kicking him, pinching him, slapping, or punching. He will actually pursue Jason around the house attacking him. He'll scratch/slap/bite/kick me if I directly interfere with something he is doing (like taking the hose from him to go turn it off), but he does not pursue me the way he does Jason.

The worst thing right now is the meltdowns like I described earlier in this post. The ones where he races around the back yard or house throwing and breaking and hitting everything within reach. Sierra knows to stay away from Jaymes when he is acting this way, but it really saddens me that she does know this. How horrible is it to be afraid that your brother will hurt you?

Sierra has started to voice her opinions about Jaymes, and this makes me feel even worse. She asks for Jaymes not to go out with us because "Jaymes is gonna yell and frow fings. (throw things)"

She actually becomes visibly embarrassed when we're out, and that makes me fear for the future. I have a friend who told me once about when she was a kid and had a developmentally disabled (Downs I think) sister. Her biggest feeling about that part of her childhood was the humiliation she suffered because of her sister's behavior. I hate to think about how Sierra will feel later on down the road. I don't want her to hate her brother or feel like she can't enjoy family time out in public because of his behaviors.

I guess the only thing we can do right now is to continue trying to work Jaymes through these issues, stabilize his meds, and help him grow to his potential. In the meantime, I make sure to spend lots of special Sierra-Only time with her, so she realizes that it is not JUST about Jaymes and his autism. Yesterday Jason was off so we took Si-Si to the childrens museum while Jaymes was at school. She loved it.

We'll keep pluggin' along like always, and hopefully things will improve soon!