And It's About Time There Was Some Support For Cushing's!
I have a prolactinoma x 8 yrs. taking medication for it.
I am here because I have a 12 yr. old daughter who in the past 14 months has went from normal to using a wheel chair. She woke up with a head-ache and the same day developed abdominal pain. Three days later her knees went out, the next day her ankles and spine began to hurt as well. She has complained this entire year of joint, head, back, and abdomin pain. She has a buff. hump that is super sensative, and very painful to the touch. She has been diagnosed with osteopenia (thinning bones) and aortic-insufficiency. Not alot else, her blood work is usually pretty normal. Her cortisol level has been a little high two times. For the past three months she has been vomiting, in the beginning it was only at night, she would thro-up after bed time. Usually alot, probally emptying her stomach. For the last three weeks plus, she vomites in minutes after she eats anything and if she drinks anything thick, that comes up too, and anything she had in her stomach comes out with it. Now for 5 days she has had diarrhea also. She had gained 45 pounds in the last 11mos. but now has lost 23 from vomiting.
Our family pediatrition sent her to CHOP in the beginning, a dr there said it must be psycological due to Sept.11, as she became ill on sept.28 did little testing and wrote it all in her charts. Our family dr. bought it about sept.11 as we are a military family. So we changed doctors to another pediatrician, he was great at first but burned out after some testing, we were sent back to CHOP for a metobolic spec. to look for a rare disease (Marfan's & porphyria).
She began looking but sent us to many other drs to rule out everything under the sun. Every dr we saw would see the first report about Sept. 11 and would quickly give up. One neurologist there at CHOP said "I wont even look at her, I saw her records, you need to get her off her butt and force her back into life, stop making her happy by bringing her here." He even wrote the base hospital about us being there.
Finally our dr sent us to DuPont in Delaware. we were so excited as they have a great reputation. They began looking even checked for Cushing's with a 8 am cort. test. It came back slightly raised, he said that is normal for her age. They found multiple cysts in both of her ovaries, that too was supposedly normal. She started her first cycle 10 weeks ago and has not stopped yet. Her skin is pale, and her eyes glass over. To date they say there is nothing wrong with her, I had a conversation with our latest dr this past thursday, he told me he had spoke to the military dr and was informed about all the dr.s who said it was psycological. He asked why I hadnt told him, and said from this point on he was gonna stop looking for a diagnosis but would start treating her for physical rehabilitation and psycological problems.
One last detail of our story, when this started she was in sixth grade and a honor student. With this all being so new to us, and adjusting to the pain she only went to school 21 days last year. When the school sent a home teacher to our house we trusted her and told her what the problem was about not having a diagnosis yet, She went to some colleges gossiping and soon we were in a battle with child services too. They investigated and dropped the case, and said to keep persuing medical help for her.
We took our children out of the local schools for now till this blows over, and are homeschooling them, which we have five daughters. Our military dr related that too to our newest dr. so he said by all that it had to be psycological. During this time I have quit working to take care of our children, this past year we also filed chapter 13, as one income is less than two. This is where we are today,she still has all the problems she has had with the vomiting and all, I want to help her but dont know how.
I am contacting NHI and Shriners to try to get her in anywhere possible. I appreciate any input you may have if it is helpful in our situation, and just for the record we took her to three different psychiatrists to rule out a conversion disorder and they all said she is a delightful young lady who needs a good dr.
