And It's About Time There Was Some Support For Cushing's!
Our oldest daughter Brook has developed a rare childhood disease called Cushing’s disease. She began to show signs of this disease only weeks after our home was hit by hurricane Katrina, but it was neither confirmed nor denied until many testing had been completed. She started to gain weight very rapidly, 25-30 lbs between September 2005 & February 2006.We became concerned, so we decided to take her to her regular pediatrician. This doctor told us not to be concerned that Brook was just beginning puberty. So we did just that until Brook began developing other problems, which only added to our concern about her health. Another mother told me to try her pediatrician, Dr. Fisher. So in May 2006 I called and set an appointment just to get a second opinion. After listening to all of our concerns and an examine of Brook he told us that he believed she was in the beginning stages of Cushing’s syndrome and wanted to refer us to an endocrinologist at Children’s hospital.
It took nearly 2 months to get an appointment with Dr. Chalew at Children’s, but finally in July 2006 we hoped we would have a better idea of what this disease was all about. After completing all the tests needed to diagnose Cushing’s Dr. Chalew still was not completely sure if what Brook had was indeed Cushing’s disease. There was one more test that could be done but there was no Dr. in our area that Dr.Chalew felt was skilled enough to perform this procedure. After talking with other doctors he decided to get Brook into the study being done on children that either had or have had signs of Cushing’s disease in Washington, DC at the National Institute of Health.
In late November Brook & myself arrived at the National Institute of Health (NIH) for 2 weeks of testing to be completed. All of these tests came to the same conclusion that the Petrosal Sinus Sampling test needed to be done to conform. This test is not always required, but in many cases, it is the best way to separate pituitary from ectopic causes of Cushing's syndrome. Samples of blood are drawn from the petrosal sinuses, veins that drain the pituitary, by introducing catheters through a vein in the upper thigh/groin region, with local anesthesia and mild sedation. X-rays are used to confirm the correct position of the catheters. They preformed this procedure in the morning and by that night we had finally gotten the answer we had been asking for the last 16 months, did Brook indeed have Cushing’s disease. We were more then relieved to finally have it conformed that she did have a tumor that could be removed surgically from her pituitary gland.
More then a year after the first signs of this disease appeared, we have been give some hope that she will have a full recovery and will grow to be a healthy girl. On February 14th 2007 on Valentine’s Day she will have her surgery to remove the tumor on the right side of her pituitary gland. She then will have to stay in the hospital for 2 weeks after, so she can be monitored her closely for any possible side effects from removing the tumor and in return taking all the cortisol from her body. This surgery has only been preformed 1200 times and only half of those where on children. We do believe that she will beat all odds and come out better then new.
http://www.myspace.com/cushingdiseaseawareness
