Monday, April 2, 2012

The Condensed Version

It's a long story...a decade in the making but I'm going to try for a synopsis here for any new readers.

My daughter, Alex, complained of a daily headache starting at the age of 7. By the time she was 10 she was having GI issue daily as well. No doctor could explain why, despite chronic diarrhea, Alex was gaining up to 10 pounds a month. By the age of 12 she was no longer healthy enough to attend "regular" school. At that point she had gained nearly 100 pounds, was tormented by a 24/7 migraine, suffered from frequent abdominal pain, had stretchmarks covering her body, and also suffered from anxiety, acne and horrible insomnia.

During this time I drug her from one specialist to the next, all to no avail. At one point I "Googled" "unexplained weight gain" and burst into tears when I read about Cushing's Disease. I knew, beyond a shadow of a doubt, this was what she had. If only I could convince the doctors.We traversed the country trying to find a doctor willing to "think outside the box" and eventually found a Cyclic Cushing's specialist  in LA, only 500 miles from home.

Finally, Alex was diagnosed with Cyclic Cushing's Disease and scheduled for brain surgery. The surgery was less than successful; they were unable to completely remove her tumor. Another year of waiting and testing ensued before she again went to surgery; this time to remove her adrenal glands; a last ditch effort at a cure. Both glands were removed and life did get better. Over the first 2 years post surgery Alex lost 70 pounds and the majority of her other symptoms vanished. Without adrenal glands life is complicated by life sustaining medications with tricky dosing schedules but it's better than life with Cushing's.

The saga the latest edition of "Life With Alex"? It's back.

(continued tomorrow)

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