We recently found out that Alex has a cardiac rhabdomyoma, which is very bad news for his condition. Usually heart growths from Tuberous Sclerosis are found early in life, and don’t grow. The fact that he’s never had anything until recently means something is most likely growing. The only good news here is it means we might be able to get Alex on a relatively new medication that’s been shown to shrink such growths in Tuberous Sclerosis patients. This would help him in more ways than just his heart involvement, assuming it works out. Of course we have no idea just yet if we can get him on this new medication – it’s in clinical trials, so it may not be an option for Alex’s situation, location, etc.
Then just a couple days ago we found out that Alex’s head isn’t like that because of self-injury, but probably a staph infection. What’s so frustrating about this is it took my wife showing that picture to Alex’s prior physician to determine what was wrong. I guess we’re going to have to find a way to keep her on as a long-distance consulting physician, as she’s been the best support Alex could have hoped for.
But today the icing on the cake is the final word from the center in which Alex lives. Marijuana is most definitely not an option. No power in the ‘verse will compel them to administer marijuana, apparently. We’re going to fight it, but so much fear and ignorance are in our way. Even people who think marijuana should be legal balk when you suggest giving it to a child.
Better yet, they still haven’t found a way to even get an okay for Marinol. He won’t swallow pills, and they aren’t allowed to extract the liquid from the capsules, period. They seem to be about as concerned of extracting that as they are of giving marijuana directly.
So once again we have Alex on a roller coaster of moods, and everybody wants to dose him up with everything but marijuana — the one medication that has ever shown tremendous success.