NEEDED: Any thoughts about kids and swollen glands and liver

[cm8]

Good idea. Thanks! I have been keeping a small note pad of questions and thoughts about what to ask/say when we see her Dr.s next. I will be adding this one to the list. I was going to wait and ask some different questions too, when we find out which one of the autoinflammatory ones it is. There are some that are worse than others, some are more difficult to treat, some are a little better.

I am calling him this week, because we never discussed if she should have a flu shot or not. Doesn't the flu shot put a small amount of the flu into your body, so your immune system recognizes it and can fight it off? What happens to her immune system that doesn't really work right? It wouldn't remember to fight it off, or if she gets the shot, will she have another flare up and her immune system will fight healthy organs and tissues instead of trying to recognize the flu shot? I'll get her to have one, but only if the Dr. says it's ok.

All of this is SOOOOOOO overwhelming right now. We are trying to get our lives to be as 'normal' as possible, but now we have this new 'normal' that has thrown us all into a crazy spin at the moment. We'll get there!!!!

Her Dr. said that it may take several months to get her on the right meds AFTER they find out which one it is, there are certain meds for each of the auto-diseases, but it's a 'trial process' that we'll need to go through for about 1-3 months with each of them until we find one that works.