And It's About Time There Was Some Support For Cushing's!
Adam is my 13 year old son who was recently diagnosed with Cushings Disease.
I had been taking Adam to my GP since he was 3 years old and had been satisfied with the level of care we had been receiving. Adam started to gain weight at a rapid pace about 3 years ago when he as 10. I discussed this problem with our GP on several occasions. As always he recomended diet and excersize and at one point referred us to a nutritionist. This was extremely frustrasting as Adam wasn't and still isnt a sedetary child. He is very active in hockey, baseball, and all the other things 13 year old boys do. He eats no more than his friends, in fact he seems to eat less as he is very self concious of the weight he has gained.
So after adding a personal trainer 3 days a week to Adams routine and still seeing no results I changed doctors and took him to a dear friend of mine, Dr. Pamela Bingham, a pediatrician here in Phoenix. She immediately assessed that not only had Adam gained weight he stopped growing in stature at about the same time the weight started coming on. Dr. Bingham also explained that in order for Adam to have gained the 60lbs in the past year he would need to be eating 2 and 3 cheeseburgers with fries and a shake 2 to 3 times a day. This simply wasn't the case. Luckilly, she ordered a full battery of blood work and had his hand exrayed for growth progress. When the tests came back it showed some abnormalities in his blood work - she then ordered the 24 hour UFC test. Adams cortisol level was at 191!!
We have since been referred to an excellent Pediatric Endocrinologist and a world reknown neuro surgeon here in Phoenix at Barrows Nuerological. Adam had his first MRI come back normal however all the Dexamethasone tests have confirmed a pituitary adenoma. We are currently undergoing the saliva sampling test and will do a low dose Dexamethasone test this Thursday. Adam will also be scheduled for a higher resolution MRI to be conducted at Barows next week. If they still cannot spot the adenoma the doctors would like to perform the IPSS test before surgery.
This is a wonderful concept in being able to explain where we are in Adam's treatment. We are not happy in any way that he has to undergo any of these tests or the surgery but we are so grateful to have an answer to why he has gained the weight and stopped growing.