And welcome! I'm so very glad you've found this wonderful forum, because there are so many wonderful people here who know EXACTLY what you are talking about!
You will get GOOD feedback here at NT

It appears your doctors are not very familiar with this condition and/or they simply don't want to commit to delving into it.
But please don't lose hope!! There ARE doctors out there who specialize in this field, and your daughter can get the proper treatment options that are available.....

Although I'm not familiar with the Chicago area, I'm sure there will be someone who will come along to give you more detailed information.
Just please stay strong in this. Don't let ANYone make you feel this condition is 'in your head' or that you have to 'deal with it'....!!

My heart goes out to you and your daughter. It's a terrible thing to see our child suffer......please stay determined....you WILL get the help she needs.

Truly Caring
Rae