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Sunday, October 24, 2010

Update on Sam's med changes

The last post about Sam's medications, I wrote about his behavior after we took him off Risperdal. He wasn't doing well - he was overly emotional and getting upset about everything.

Just a couple weeks later, I'm happy to report that Sam is doing just fine without the Risperdal. He's no longer crying over every little thing, and he's much more calm. I have noticed more "mouth noises", and a little more excitability, but overall, he's been so much better.

We've been discussing the mouth noises, and Ray and I tend to disagree a little about them. Ray thinks they're just habit, something to entertain himself; I think it's a tic he can't control. I do see more characteristics of the Tourette's Syndrome now that Sam's off the Risperdal and I think the mouth noises - at least at first - are something he can't control. We do ask him to stop them, and he does for a few minutes, but then he's right back to doing them. It's something he either can't control or he's not aware he's doing them. Either way, it's something we can definitely live with.

Sam's also lost weight since going off Risperdal. He was 110 pounds, and now he's back to 100. He's not eating until he's miserable anymore. He doesn't finish everything on his plate - even if he likes it. This is what we had hoped to accomplish by taking him off Risperdal, and it's working!

Another positive for Sam - he hasn't been hitting or kicking as much anymore. He was really having a hard time with Kiki, Ray's younger daughter. Every day, he was hitting her, tackling her, kicking her, etc. For the past two weeks, he's kept his hands off her. He did have an incident the other day with one of CayCay's friends (CayCay is Ray's older daughter), but overall, he's definitely improved.

I'm very happy with my boy lately!

Sunday, October 10, 2010

Teaching Sam to ride bike

Sam used to be awesome on his bike - back when he was four and he still had training wheels. Then one training wheel broke, but he still did great with just the one training wheel. Pretty soon that one snapped off too. We tried a couple times getting him to ride his bike without the training wheel, but he wiped out and flat out refused. He actually told me he wouldn't ever ride bike again until he was 10. I'm not sure what was magical about that number, but it never changed. Always 10.

Today we spent the entire day outside. My boyfriend Ray worked on the four-wheeler while his oldest took a spin on the dirt bike. All the kids got a dirt bike ride from Ray. His youngest daughter and I went for a bicycle ride, and we dug her old bike out to let Kaydee try to ride. I had an idea... it was time for Sam to learn to ride bike.

Ray's oldest got him on the old bike and tried to get him to go, but he wobbled and couldn't keep his balance. He was about to give up, but then I got up there and held onto the bike with him while I ran next to him. He screamed at me not to let go, but I did with a shove and sent him down the road. He couldn't figure out at first how to pedal, but he did get the hang of it, sorta.

Next up was getting him to self-start. He had one helluva time trying to figure out how to push off with his one foot, pedal with the other, and then bring his other foot up to the pedal. We never did master this task, but it takes practice. I could tell he was getting frustrated, so we focused on something else: steering.

He could not get the hang of steering and kept veering off to the left. I tried teaching him to turn the handlebars, but that was too much to think about - pedaling and steering. 

I'm not being sarcastic - that's a typical Asperger's thing. They can only focus on one task at a time. Aspies also have a tendency to be physically clumsy. The trick is to make them get right back on the bike after every crash, and let them be done once they've "successfully" ridden for a bit. Next time Sam won't be as terrified!

I'm very proud of Sam and his attempts today. Tomorrow we'll try again!

Friday, October 8, 2010

Changing Sam's Medications

With the new move comes a new doctor for Sam. Personally I'm happy about him having a new doctor - his old one never listened to me about Sam's medications, and he never talked to Sam either, although he insisted Sam be present at all the appointments. It was ridiculous, and his old doctor refused to give me a referral to a new doctor too, leaving Sam without a doctor for the whole summer while I tried to find a new one.

I finally contacted the pediatric neuropathologist Sam saw last year to see if she had any recommendations. She did and gave us the necessary referral to see the new doc. Sam's appointment was last Friday, and she agreed with my concerns about his medications.

See, Sam was on Risperdal, which is a powerful anti-psychotic medication that is also used as a mood stabilizer for children with ASD. But the side effects are horrible. The drug causes weight gain because the body can't feel that "full" feeling. Sam would eat until he made himself physically sick. I know this because it happened a couple times until I realized what was going on. 

He was only 7 years old when he started taking the med and he ballooned from 80 pounds to 100 pounds in just a few months. He's still at 100 pounds almost a year later, so he hasn't gained anything since then, but he also can't lose any weight either. This has affected him emotionally and socially as well as physically, because kids are picking on him and calling him fat. He's already got strikes against him socially - last thing he needs is to be teased about his appearance. He's such a beautiful boy!

So the new doctor took him off Risperdal and is planning to change up his other meds, possibly putting him on one medication which will replace the three he was taking. But... Sam's not handling things very well since we took him off the Risperdal. 

It's been almost two weeks, and he's already overly emotional about everything. Today the school called to tell me that he was having a bad day. He wasn't physically aggressive to anyone (which had been a real problem lately at home) but he was just emotional - crying, easily frustrated, upset and angry. 

I don't think it's withdrawal from the Risperdal because these were the things I was seeing in him before he went on it last September. So... I placed a call to his doctor, who was out of town today for a conference. Her nurse said she'd be back on Monday and would get in touch with me then. 

I don't like seeing my boy like this, but I don't want him back on Risperdal either. It's hard to know what to do...