Any of you that know me, know my daughter and her history. But for those of you who don't let me give you a little bit of background. Her name is Faith and she is ten years old. She is perfect in every way... except one. Her adrenal glands don't work. She is considered adrenal insufficient. Not Addison's in the normal way, from steroid use or autoimmune issues. Her dysfunctional adrenal glands were the result of an adrenal hemorrhage at birth. We had an especially rough delivery in which she crowned for hours and they could not get her out of the birth canal. They used every means imaginable and finally were able to extract her from my body... but not without a good deal of trauma.
She looked like the perfect little baby girl, until the bruising and jaundice set in. Her delivery caused a great deal of physical trauma. They kept her in the hospital at first so they could monitor her sugar level, because I was gestational diabetic. Then after a day or two they began to notice that there were problems with her bloodwork... It took two weeks of her being in ICU and numerous doctors trooping through the hospital nusrery, ordering multiple tests, and then shaking their heads in confusion. Everything looked fine according to the tests they were performing. Finally her savior doctor came through- he was a stand in for the endocrinologist who had already seen Faith and come up empty handed. He asked the staff if anyone had thought to test this baby's adrenal glands. The other doctors and nurses acted as if he had no sense, but they must appease him, so they went ahead and did the tests to satisfy him. Lo and behold! The tests came back and indicated that she had had a total bilateral adrenal hemorrhage... in other words, both adrenal gland had exploded, essentially... One doctor likened it to two soldiers fighting a war to the bitter end.... they were wounded, but kept fighting, and once the fight was over, they gave up the ghost. Her adrenals did the same thing as they were trying to keep her alive during an exceptionally horrid birth. Poor little fellas fought to keep my baby alive for almost a full 24 hours before giving up the fight once she finally entered this world.
We were told for the first three years that there may be hope that her adrenal glands would heal themselves and begin to function. It had been known to happen for another of the doctor's patients who had had a similar situation at birth. But when she was three, her doctor called after reviewing some routine bloodwork and told me that he didn't believe her adrenals would heal at this point.
For the next 3 years we still held up hope that someday we would find that her adrenal glands somehow began to work. Because her case was a bit unusual, her endocrinologist referred us to a doctor at the NIH and off we went to Maryland in the hopes that the doctors up there could help us find a way to get her glands up and running!! That first visit in 2006 was disheartening. We were told that her adrenal glands had completely calcified and that there was no hope of them ever working again. I should resign myself to the fact that she would be on the steroids all of her life. (Any of you who know me, know that I am not that easily resigned to something that does not suit my fancy, and this definitely did NOT suit my fancy!)
In 2008 we went back to the NIH for a follow up exam with the doctors there. They scratched their heads in confusion when the MRI and bloodwork results came back. Apparently it "looked" as if there was some living tissue... ever so small... in her glands, and some adrenal function... ever so little... I was told not to get my hopes up, as this was probably not the case.
But, this was the miracle I had been praying for! Granted, her glands were not functional... only just beginning to come to life! But it was a pinpoint of light in this dark spot on her life. Two years later, in 2010, I took her back to the NIH yet again.. This time the test results confirmed that there was definitely living tissue and function of her adrenal glands!!!
Well now!! Let's fast forward to late 2010 when, in sharing thoughts and stories with the two wonderful yahoo adrenal groups to which I belong, I discover a doctor at Harvard who has been successful in helping to wean other AI patients off of their steroids and who everyone has much confidence in. (That happens so little in the world of adrenal patients) So, being one of those moms who won't take NO for an answer, especially when it comes to my child's health, I contacted this doctor and a new local endocrinologist, as we had moved to another state and could no longer be seen by her savior doc. They both agreed to take on her case and possibly try weaning her off the steroids. Everything in the past two years points to the fact that she can be weaned successfully, so that is what we are praying for.
Soooo.... here we are... in the early stages of possibly weaning her off the steroids and getting her adrenal glands to function after spending her whole life as an AI patient. I understand that this will take time and patience. But I also understand that there may be no need for her to stay on this medication and to be AI all her life. She has never had a crisis, nor has she ever come close to one. She is more healthy than she should be, by rights...and she is thriving! This gives me the encouragement to move ahead with the weaning process and the hope that she will get through it with little trouble.
I feel the need to go through with this process because I feel that if I did not I would not be doing everything that could be done to insure her best health.
We went to the local endo last week and she is on board to begin the weaning process. She will be consulting with the Harvard doctor and we will soon be on this adventure. We will have an MRI done at the end of March along with bloodwork, and bone age and bone density scans to see where she is. After that the local endo plans to set up a weaning schedule and off we will go!! Wish us luck.
