My 5 year old son has ALL and is on his second round of maintenance and decadron has had the most pronounced and worst side effects of any drug he has been given. The worst of which are the psychological effects, he is on decadron 5 days per month. He is edgy and moody while he's on it, but the worst is the withdrawal days 10-12 being the absolute worst, he seems to have a more sever reaction than do other children. What he exeriences is considered decadron psychosis. There have been times where if he were an adult I'd take him to the mental hospital for observation/evaluation. He goes crazy, screaming bloody murder/crying uncontrollably (for no apparent reason), throwing, kicking and breaking things. The days are predictable, but what or when during the day will unleash the decadron monster is totally unpredictable, nothing at all can set off an 'episode'.
He was given ativan, started with .25 mg as needed and went as high as .75 mg up to every six hours on the bad days. This seems to do very little, it does not bring him out of an episode, it makes him a little glassy eyed and wierd. I'm thinking he's feeling a little high as people have described feeling. So then he's wierd on top of everything else. So, this past month he was given potassium for 9 days beginning on day 1 of the decadron regimine. This seemed to keep him calmer and his moods more even while he was taking the decadron, not 100% calm or even tempered, but improved. Days 10-12 saw a slight improvement, but this is still not where he needs to be.
We really need to get him in school and not have to be in lock down in our house for half the month. Has anyone had a similar experience and what if anything worked to help. He sees a play therapist and she suggested some alternative therapies to help him calm himself, like Rieki (sp?) or yoga. I am open to these things at the very least it could help him recover from the trauma of the episodes once they are over. He has 27 more months remaining in maintence. If I have to endure this 27 more times, I might go crazy, it is very stressful.