And It's About Time There Was Some Support For Cushing's!
My name is Samantha & my daughter Brook was dignosed with Cushing's disease in November 2006. She had surgury to remove the pituitary tumor on Feb. 26th 2007.
Brook's story begin in the months after we had returned to our home in Louisiana following hurricane Katrina. Aug. 2005, Hurricane Katrina blew in & destroyed our home.
September 2005 we returned to Louisiana & began to notice a change in Brook's weight, she had put on 20 lbs since Aug. very quickly. Months had passed & we started to get back to normal life again. We had got a new home and the kids were back to school. Brook had continued to put on weight, but now we noticed other things happening. Besides the 45lbs she had put on since Aug. 2005, she also started to get bad acne, dark rings around her throat, & she became very moodie. So i took her to her Dr. & the doctor told me i needed to put Brook on a diet. The doctor said that her weight was do to overeating & not exercising. I then informed the Doctor that Brook's eating & exercising habits had not changed enough to make her weight increase by 45 lbs in only 4 months. Brook was a very active kid. She walked & swam everyday & was not eating unhealthy. The doctor also told me that Brook's weight was also probly different because she was beginning pubirty. At this time Brook was only 9 & I just took what the doctor said & went on about my business.
A few more months passed & Brook's weight and other symptoms only seemed to increase. So someone told me about her kid's doctor & told me maybe i should get a second doctor to take a look at Brook.
So in June 2006 I took her to see Dr Fisher and told him what was going on with Brook. He looked her over for a few minutes then he excused himself for a minute. I was more then sure that he was gone to tell me the same thing the other doctor had told me, but to my surprise he pointed out a few things to me. He said that Brook had all the signs of a rare disease called Cushing's. He pointed out 2 symotoms she had that I hadn't even noticed. He said that Brook's round face which he called moon face and the hump in her back called a buffalo hump where 2 very good inductors that she may have this disease. He then refered us to a hormone doctor at Children's hospital in New Orleans.
Dr. Chalew her endo doctor ran many tests on Brook and discovered that she had all the markers for this disease. Usually an MRI would show a tumor but Brook's MRI's didn't show a tumor, they only showed that one side of her pituitary was larger then the other side. So there was one more test that could say for sure if she did indeed have Cushing's, but with a shortage of doctor's in Louisiana there was no one to do this test on her.
So Dr. CHalew talked with other doctor and searched the net for a doctor. When he discovered a study being done in Washington DC on ped patients for Cushing's. He refered us to the National Instiute of Health in Washington DC & we set a date to fly out for more test to be done.
The NIH paid for us to fly there for 2 weeks for all the same test that were done here to be done again. So in late November 2006 we went to Washington at the end of those two weeks we were told the same thing that Brook needed a sample of blood to be taken from her pituiatry gland to final give us a dignoses.
SO after many months of worry we were told she did indeed have Cushing's disease and we were schduled for surgury. We got a date for late Feb. to fly back for surgury. On Feb 26th 2007 Brook had her surgury and she is doing great now. She is on steroid right now but she won't have to take those for more then maybe a year.
She has a carepage set up thru the NIH. You can view before and after picture of her there. At carepages.com page name Brookcushings