It certainly sounds as though you have had a rough year. I guess that having a diagnosis at least enables you to seek out the appropriate treatment etc. Some of these conditions are a pain because of the lack of current knowledge about them. I guess it is one of those things where what works for one person won't necessarily work for another.
Good luck with all of it and it's so great that you have found someone who can help you!
Not every day is a good day, but there is good in every day.
"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables
Welcome to the forum Gigi, I am sorry you have such an awful condition to live with. I am pleased that you now have a diagnosis as it is so hard living without a "label" as such. It is wonderful that you have had a period of remission too and I'm sure that goes a long way into giving you hope for the future.
It must be ever so difficult for you to watch what your daughter goes through on a daily basis. It is a truly helpless position to be in where medicine fails our children. Poor little thing is certainly on some high levels of drugs to help control her pain and discomfort. I am pleased that Gigi has come along to this group and is sharing her experiences with you. May this help in giving you a small amount of comfort that there is someone else for you to share your experiences with.