Sarah, I am 41, and learned that I am hypopituitary about a year ago. Getting diagnosed is one of the most difficult things. Now that you have your daughter's diagnosis, the next big step is getting a GREAT endo to take care of your daughter. There are a lot of endos out there, but finding a GOOD one who is familiar with pituitary diseases is so important. I didn't get diagnosed as a child, but I do know what it is like to be "new" with the disease. In the last year, I have learned so much. The most important of which is you don't have to accept or believe everything that your doctor tells you. If you have don't like what you are being told by your doctor, get a second opinion. I was seeing an endo at a top 10 US hospital. He wasn't "convinced" that I was hypopituitary, and as a result I was not placed on all of the hormone replacement that I needed. I gathered up ALL of my medical records, drove over 5 hours from my home, and went to see a endo at a pituitary clinic. I was told at my very first appointment at the pituitary clinic that 2 of my tests had been misinterpretted at the top 10 hospital. Yes, I was hypopituitary. He placed me on all of the necessary hormone replacement. Of course, it wasn't my first doctor's fault that the tests were misinterpretted, but that just goes to show if you don't feel comfortable with what you are being told, get a second opinion. My MRI was interpretted as normal, and without actually reading the films, I would have never discovered that my MRI was abnormal. And, my growth hormone stimulation test was interpretted as normal, but was no where near being normal even on the first blood draw. As for the growth hormone, I started on the injections just this year. I have been on them for almost 6 months. I have been told that I shouldn't have a problem staying on the GH injections for as long as I need them. Along with GH, I'm also taking hormone replacement for female, adrenals and thyroid. I've lost everything to the anterior portion of my pituitary, and we're not sure why. I know as a mother of 2 girls that I would not want either of my daughters to have to go through what I have in the last year. But, I even feel that way when they have the flu. When they are so sick, we, as mothers, we so often wish that we could take away the pain and discomfort for our children. The reality is that we can't do that. All we can do is use our best judgment to provide the best possible care for our children that we possibly can. With good health care, your daughter will get better, and she will feel better. As a "newbie" to this disease, I'm still learning. This is a wonderful place to get answers. But, if ever you would like to e-mail feel free to contact me at [EMAIL PROTECTED]. Sheri |
