I just became a registered nurse, and my ten-year-old son is infant-like, has frequent meltdowns, and cannot stand without support. He is missing a piece of DNA (chromosome 9q22.2) but we are unsure if it made him disabled. He has a diagnosis of severely multiply impaired, paucity of white brain matter, partial agenesis of the corpus callosum, microcephaly, deformities of the ankle and foot, and Autism.
Tuesday, December 31, 2013
We had a good Christmas
We had a pretty good Christmas. Andy didn't have too many outbursts. He enjoyed new musical toys like pianos and trucks. I was worried I would have a really hard time with him out of school for two weeks. He has been manageable. When he has outbursts, he usually just needs time alone in his room, and often falls asleep.
Wednesday, December 18, 2013
Three weeks off of Abilify
Andy has been off Abilify since November 30th. It's been almost three weeks. I've been looking for signs of withdrawal, but don't really see any. He is still on Trileptal, which is a mood stabilizer. When he is having an angry outburst, and he receives 3 ml of it, he calms down within 20 minutes. He is getting it twice a day now. I am not interested in weaning him from the Trileptal just yet, but my husband would like to in the future. He is still having constipation issues. So, I keep a diary of how often he is having bowel movements and the size. I was told by a nurse to continue to give him a stool softener daily. Also, if his bowel movements have only been very small for several days he gets stool softener more than once a day, or something else to make him have a stool. This usually helps his behavior, and a low appetite to get better. The iPad is working again, so he really enjoys his interactive musical games, such as the Itsy Bitsy spider, by Duck Duck Moose.
Tuesday, December 3, 2013
Weaning off Abilify
I have weaned Andy off the Abilify. At one point, he was taking 5ml a day. It didn't seem to help much. He still has outbursts, whether he is on it or not, so I am taking him off.
I decreased him by .5ml each week. It took ten weeks. He had constipation several times during the weaning process. The main change I've noticed is that he is not as sleepy. Some days he does not want to take naps, but he will lay in bed for a quiet period though. The first night he was totally off Abilify, he did not go to bed until 1am. He did take a late nap on this day though. His body is slowly adjusting back to his regular sleep schedule.
I believe he is just getting older, and this is the main reason he isn't napping as much anymore. My feeling was to see how Andy's behavior is without Abilify, because I think he is just irritable Andy no matter what we do. He has happy times, and outburst times. During the outbursts, he is put in his bed, which he can't get out of, until he calms down. He cannot get out of his bed, because he still cannot sit up on his own. He can only roll around, and pull himself with his arms, like army crawling.
I have started up the orange flavored fish oil again. Once a day, he gets it with yogurt or ice cream. He's been getting it for about a week. I use the Omega-3 squeeze packs for him. Since the medication has been removed he seems a bit more alert. He is still on Trileptal for a "calming effect". I am going to start weaning this as well, after I talk to his nurse practitioner.
I decreased him by .5ml each week. It took ten weeks. He had constipation several times during the weaning process. The main change I've noticed is that he is not as sleepy. Some days he does not want to take naps, but he will lay in bed for a quiet period though. The first night he was totally off Abilify, he did not go to bed until 1am. He did take a late nap on this day though. His body is slowly adjusting back to his regular sleep schedule.
I believe he is just getting older, and this is the main reason he isn't napping as much anymore. My feeling was to see how Andy's behavior is without Abilify, because I think he is just irritable Andy no matter what we do. He has happy times, and outburst times. During the outbursts, he is put in his bed, which he can't get out of, until he calms down. He cannot get out of his bed, because he still cannot sit up on his own. He can only roll around, and pull himself with his arms, like army crawling.
I have started up the orange flavored fish oil again. Once a day, he gets it with yogurt or ice cream. He's been getting it for about a week. I use the Omega-3 squeeze packs for him. Since the medication has been removed he seems a bit more alert. He is still on Trileptal for a "calming effect". I am going to start weaning this as well, after I talk to his nurse practitioner.
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