Big Changes

We saw Javan’s psychiatrist three days ago and upon observing Javan and hearing about the behaviors we’re experiencing, he came to the conclusion that these medications aren’t doing a thing for him and we need to slowly wean him off of everything. You know, pretty much what he wanted the behavioral hospital to do a month ago. He was in frustrated awe that the hospital put Javan on such heavy duty medications, several of which were not approved for children. He explained that those medicines would eventually burn out all his internal organs starting with the thyroid and moving on to the liver and kidneys. We knew that was a likelihood with some of the meds we’ve tried, but if it’s not even going to help in the meantime then why take the risk? He said that he did not think that the four good days of behavior following his last hospital visit were due to the medications, but rather due to the relief and novelty of being back home. Once it became normal to be home again, the normal behaviors returned. He also does not think that the cold or cold medicine contributed significantly to the behavioral problems. So we all agreed to try a slow med wash at home. He gave me directions for how to reduce the ADHD medicine this week and then I’m supposed to call him every week to get instructions on what to reduce next. And if we take something away that causes extreme negative behaviors, we can always increase it again. He also encouraged us not to try any diet changes during the medication wash, but to wait until after just so things are less complicated.

Some of the negative behaviors we’ve seen since those four days of bliss ended are increased aggression, increased defiance, unwillingness to do schoolwork or chores, unwillingness to do basic hygiene tasks like bathe or brush teeth, decreased willingness to use verbal communication, increased rages and meltdowns, decreased sleep, and increased auditory and visual hallucinations.

Last night, Javan spent the night with my mom. She had some insightful things to talk to me about when she brought him home. First, he only slept four hours last night, from 4-8 a.m. He was afraid to go to sleep because he was having severe hallucinations of the evil bat creatures from Hotel Transylvania 2, a movie we got to watch yesterday morning in the theater through a sensory friendly films program. She said he was crying uncontrollably and physically dodging them. It was very apparent that they were real to him. I guess it’s finally time for me to stop doubting his hallucinations and questioning if they’re just intense pretend play. He also told my mom that he’s been hallucinating a lot over the past few weeks but didn’t want to tell us because he was afraid he would have to go back to the hospital. I had noticed him hallucinating more; things like passing a basketball to someone who wasn’t there or asking me what a noise was when I couldn’t hear anything. So his dad and I talked to him and encouraged him to tell us about when he sees or hears things he’s not sure about and reassured him that he would not go to the hospital for any reason other than his or our physical safety.

He also told my mom that he likes to try his hardest to make Mom and Dad angry because he wants us to understand how angry he feels much of the time. He doesn’t know why he feels angry, but he wants us to experience that intense anger so we can relate to him. I’m not sure what to do with that information yet, but I think it’s incredible that he was able to think through and express that.

It is now time for us to attempt a nap. Wish is luck!

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