Wednesday, March 17, 2010

Trevor update!

On Monday morning we went up to the hospital to have a meeting with the social worker, child psychiatrist and Trevor's case manager. In the end, his case manager had a family emergency, so it was just Karl and I and the two others.

We talked about what has been going on at home - Trevor's meltdowns/tantrums - his running off - his eating issues. They too assured me that it is completely normal for AS kids (and yes even "normal" kids) to save their worst behavior for at home. What I wouldn't give to be able to nail this home to some folks - they still continue to think that it's abnormal that he doesn't misbehave anywhere else. Yes, I want the behaviors to stop at home, but I am more than grateful that he doesn't do it elsewhere. He's a really good kid all in all!

So let's see ...first off...he's been officially diagnosed as obese. His weight has been increasing leaps and bounds - just in the past month he's put on a few pounds. There was one medication he was on - Abilify - that the Dr. felt wasn't helping him any, but was making his appetite insatiable. She said he is starving all the time - constantly wanting to eat. Of course, we knew this. We just didn't know which medication was the culprit. So she's taken him off the Abilify and we hope to see a decrease in his appetite. If we can get that under control, he should be able to shed some of that excess weight as busy as he is. There is also something else she brought up in terms of his weight and that is Prader-Willi Syndrome. I wasn't too familiar with it, and I mistakenly thought that because he wasn't not mentally handicapped that he couldn't have it, but after reading, I've discovered that much like Aspergers, it's a spectrum disorder, meaning that not every child will have every symptom - it will vary. So this is something she is considering at the moment. She was going to talk to Trevor's pediatrician and they might do a work up for this.

Secondly, she did put him on DDVAP for the bed-wetting. He's been on the lowest dose since the weekend, and has not had one accident thus far. He was quite happy to tell us when he saw us Monday that he was not wetting himself at night anymore. I think this is going to be such an amazing thing for him. While he won't understand, I think this is going to raise his self confidence in many ways.

Thirdly, he was being scheduled for the sleep-deprived EEG to see if there has been any seizure type activity. She was keeping him on all his other medications till he had the test, as she wanted to make him most vulnerable for this type of activity, this way we'd know. If she took him off before the test then it could skew the results. In the end, he had that test this morning. Unfortunately, it can take up to a week to get the results, so we won't know anything for a while yet.

I guess the EEG will also give her a better idea about him having Intermittent Explosive Disorder. There is also a possibility that he will have an MRI.

Lastly, once the EEG is done, the Dr. was going to put him on a mood stabilizer. I can't think of the name of the ones she mentioned - well I take that back, she mentioned Depakote, but that is known for increasing appetite and weight gain, and that is not something she wants to have happen where he's already battling a weight issue. So, she'll take him off the other medications he is on and just put him on the mood stabilizer. I think this is a step in the right direction completely.

On Monday, the speculation was that he'd be there till the end of the week or beginning of next week. But when I called today to see how the EEG went, the nurse seemed to think he will be there till sometime next week, seeing as how it can take up to a week to get results on the EEG. We have another team meeting scheduled for this coming Monday.

He had a rough day today - he was woke up at 3:30am in preparation for the EEG this morning - yeah, that whole sleep-deprived thing! So he was extremely tired and non-compliant at one point, so they said he was put in the time-out room. When I talked to him, he was so sad - crying over what had happened. Here is hoping that tomorrow is a better day for him.

Right now I just am on pins and needles till we get some results. To have all this hanging in the air is hard, but like I said, I feel like we are on the right path with this now.

It's definitely been strange not to have him home again  - tomorrow will make a week that he's been gone again. It's eerily quiet around here at times. And it's not just affecting Karl and I, but also Victoria. When I talked to Trevor today, I asked if he wanted to talk to Victoria, and he said in between tears, "no". Well, she was heartbroken and started bawling - she misses him so much. He's her buddy - her playmate. So he heard her crying and said he'd talk to her, and she was so happy to hear him. She told him in between her own sobs, that she loved him and that he is in her heart. Talk about pulling at the heart strings.

I am so blessed to be their mommy - I cherish these gifts I've been given.



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