Friday, August 12, 2011

From Bad to Worse......

In the weeks since I last posted, things have gone from bad to worse. Today we had to remove the door to Nick's room. As well as any toys that remained in there. We dismantled his bed last weekend. He goes into a rage and just destroys his room. So, in order to prevent any more damage to himself and the house; everything is gone. The reason we took his bed apart was because he was moving it all over the room-all day long. So now he sleeps on the trundle bed that was under his big bed. He had an all day long meltdown today. I have e-mailed his doctor and he wants to see us ASAP when he gets back in town next week. The actions Nick is currently doing are listed as severe side effects from his current medication. Until we can get in to see the doc to discuss weaning him off of Risperidal slowly, I have bought some melatonin to calm him down. Yeah, we gave our child Nyquil tonight JUST so he would stop his psychotic rage and calm down. Judge us ONLY if you have ever gone through anything remotely close. After a day long scream/self injury/rage fest you would probably do just about anything for some peace. And we did. After a dose of Nyquil Nick was happily eating french fries. He has not been HAPPY to eat for a MONTH!

We had a lengthy discussion with his BCBA yesterday, and she agrees that Nick is on a downward spiral and does not enjoy much anymore. She wants to come with us to his docs when we go. They took days of data which would be useful to getting just the right combo for Nick. On top of that, the neurologist called. His Fragile X test came back Negative. YAY!! His other labs have not come back yet. We moved on to the EEG. They DID get something out of the EEG; but not enough to say for sure it is seizure activity. If he does continue to have those episodes, we can discuss seizure medication. BUT, since we lowered his dose of risperidal, those episodes have disappeared. YAY! Just bear with us, as I may not be posting all that much until we can get this under control. We are working on it.