Hi sophiesmom
I am sorry you're having to cope with this
Try to get the best treatment and support you can with it, hey?!
You might already know all there is, but otherwise could help to do a little research for things that may help a little?? And I know there are some forums online for it too if they could help...........
Just throw at it what you can, hey (??) and sending you hugs:
Alison