Flame, I am so very sorry to hear that but one thing I know from personal experience, God works wonders.
Whether you believe in a higher being or not, I prefer to believe there is someone greater than we here on earth.
All I can say is to put your faith in Him and the doctors that the problem will be found and can be cured and/ or controlled with meds. And if it be His will, it can disappear never to recur again. Thru all this, remember that He has a purpose for all that occurs.
That being said, prayers, hopes , and good wishes go to you, Desi, and the rest of your family because this is a family situation, granted moreso for Desi and you, but family none the less.
Keep us posted, if we can help just say so.