I remember seeing pictures of his Dad at that age and he was a little chubby, so I figured it was probably normal growth. By the end of April I was starting to get a little worried, he was steadily gaining weight but it was like most of it was in his face. He looked swollen. Our nephew came to visit and asked me if Easton was on medication containing steroids. He was not on any medication at all. The last week of April I took him to see his pediatrician. He had gained 10 pounds since the last time he had seen her. It had been almost a year since his last visit; she didn't feel like 10 pounds in a year was that much. What she didn't realize was that he had gained those 10 pounds in about 6 or 7 weeks. She did say that he had a "cushingoid appearance". She did some lab work. The lab work was pretty normal; his blood sugar was high so we did a fasting glucose test which came back ok. She wanted to wait a few months and see him again, she said if he gained anymore weight, even a few pounds, she would do some further testing and probably send us to an endocrinologist. Our next visit was in August. On the way to the doctor Easton said "Mom, I know I've gained more than a few pounds" and he was right. He had gained 12 more pounds! He was gaining more than a pound a week. Our doctor was shocked. She referred us to an endocrinologist immediately. It was several weeks before we could get in to see him. In the mean time Easton was changing every day. He would wake up in the morning and not be able to wear the pants that he wore a few days before. He had horrible acne; he was tired all the time and complained of headaches almost daily, his tummy and face were getting bigger and bigger but it seemed like his arms and legs were not. He had, what I know now is called a buffalo hump at the back of his neck, his skin was changing and he was getting stretch marks on his sides and legs. We started researching Easton's symptoms and Cushing's disease kept coming up.
By the time we were able to see the endo I was pretty certain that Easton had Cushing's. The doctor was not so quick to agree with us. He said that Cushing's disease was so rare in children that it was highly unlikely that that was what Easton had. He said we needed to look at Easton's nutrition. I told him I didn't care how rare it was and that his nutrition was not the problem. He was gaining several pounds a week at times, there was no way he was eating enough to support that kind of weight gain. He agreed and we started testing. We started 24 hour urine collections for several weeks. It was 4 or 5 weeks before we heard anything. We were interested in his cortisol level, the doctor said it should be around 15 or 17, the first test showed it to be about 500!! After several more test including a cat scan and an MRI, our doctor referred Easton to The National Institutes of Health in Bethesda Maryland. We made our first trip there in December 2006. We spent a week there for testing and he was diagnosed with pituitary Cushing's disease on December 17th 2006. His surgery was scheduled for January 31st 2007. The next month was very difficult. Easton continued gaining weight and having other physical symptoms. I think the hardest part was his emotional state. He became very withdrawn and depressed. Not wanting to hang out with friends or go to school. Not only was he gaining a tremendous amount of weight he also hadn't grown in height in almost 2 years! His weight gain totaled, at the time of surgery, 61 pounds in about 1 year. Easton had his surgery on January 31st, the whole tumor was removed and he his doing wonderful. The changes I'm seeing in him are amazing. He is starting to look like the Easton we all remember and best of all starting to act like himself again. Since his recovery in February 2007 Easton has lost 35 pounds and grown almost 3 inches! He is enjoying playing baseball racing his bike and hanging out with his friends this summer. Our many thanks go out to our doctors and the staff at The NIH. We would have never made it through this without the support and friendships we've found through CSRF. Thank you all so much!!