How Do We As Parents Deal with Our Childrens' Cushing's? In August of 2004, our lives changed completely. I took our five year old son to his pediatrician for his check-up for kindergarten. Everything looked fine and all looked normal. Three weeks later, I called his doctor and told her that John was going through puberty. He had a mustache, pubic hair of a boy a lot older and he had gained 15 pounds in the weeks since she had seen him last. She told me to bring him back into her office the next week, which I did. As soon as she saw the mustache she looked at me like ah oh being over protective again. I asked her to pull down his jeans and a look of disbelief came over her face. She immediately went into her office and then came back doing this twice. She told me they needed to take some blood and she was sending us to have a bone age scan done. A couple of days later they called and told me that the bone age scan showed that he had the bones of an eight year old. I told them I needed an Endocrinologist now; I did not want to wait on the blood results.

I took John into see the Endocrinologist as soon as I could get the first appointment but in the mean time I had to take him to have an ultra sound done. We were thinking we would go right back home but we were asked to wait for a few minutes. His wonderful pediatrician was on the phone and she told me, “You know me I don’t beat around the bush, John has a tumor and it has to come out. There will be an oncologist in shortly to talk to you”. He came into the room as we were speaking and then we went over to his office and did a complete workup on John. I was in shock - all of my family dies from some type of cancer. “My God, this can not be happening to us”. In sheer devastation I called my husband who was on a job in Nashville, and my mother who lives in Maryland and told them the news. My husband told his co worker he had to come home with or without him. When they got back home he called and wanted to come to the hospital but I told him the CAT scan was done and we would be on our way home. I was told John had a tumor the size of a baseball on the adrenal gland and it had to be removed. This was the reason my son had stopped growing at 43” tall.

We had to take John to a cardiologist and we then found out he had a high blood pressure at almost stroke level. He was put on medication to bring it down but within a few days we were told to do the surgery. The pressure would not come down any further until the tumor was removed. We met with the surgeon and she told us that the surgery would take about 6 to 6-1/2 hours so we watched our little boy go into the double doors and then we waited. Two hours later “Dr. Frankenstein” which John nicknamed her lovingly was back in the waiting room with us. When I saw her I just knew they had opened him and closed him back up. She told us they got it all and it was still encased but they did have to remove the left adrenal gland. John’s body had been making three times more of the hormones than it should have been.

We stayed at the hospital for only three days. Then when we came home John had to continue on Cortisol for a year to help the right adrenal gland start functioning again. We had hoped that what the doctors had told us would be true. Give John’s body time to catch up with his brain and everything will be alright. It has been almost two years. John has had a horrible time in school. He has very poor motor skills and has rages of anger and frustration. He is on medication to help with his inability to focus. He is also on medication to help him sleep. We have been told that his brain just can’t slow down to allow him to sleep. We have gone through three psychiatrists none of which have been able to help us with the problems John has. We now have an intervention group helping with John and a great psychologist he sees weekly.

I am anxious to find out about other parents experiences and help anyone that I can. I’m also sending out brochures and letters to help raise the awareness of Cushing’s in and around my community! I’d love to hear from others.