So, we wait. In April she will have an other abdominal CT; there is a new type of scanner, a 320 slice, and we have located one in the Bay Area, only a couple hours from home. In the meantime we hope the weight gain abates, she tries another round of Ketoconazole, a drug that can reduce cortisol (but that she have had no luck with in the past) and we pray that a target appears on the next scan.
Thursday, February 7, 2013
It's Back...
We spoke with Dr. Friedman this week and he confirmed what we already knew. Alex is producing cortisol, yet again. She had both a pituitary MRI and an adrenal CT recently and both came back clear. As much as that sounds like good news our Cushie friends know this is not. Without a surgical target nothing can be done.
So, we wait. In April she will have an other abdominal CT; there is a new type of scanner, a 320 slice, and we have located one in the Bay Area, only a couple hours from home. In the meantime we hope the weight gain abates, she tries another round of Ketoconazole, a drug that can reduce cortisol (but that she have had no luck with in the past) and we pray that a target appears on the next scan.
So, we wait. In April she will have an other abdominal CT; there is a new type of scanner, a 320 slice, and we have located one in the Bay Area, only a couple hours from home. In the meantime we hope the weight gain abates, she tries another round of Ketoconazole, a drug that can reduce cortisol (but that she have had no luck with in the past) and we pray that a target appears on the next scan.
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I am so sorry Rene. I pray that He lift this burden from your family and she will be healed
ReplyDeleteOh Rene, I'm so sorry. :( Prayers coming that they can find the buggar, and Alex can get on with her life. (((hugs)))
ReplyDeleteHello Rene,
ReplyDeleteMy name is Jenn and I thank you for detailing everything. I am 25 years old and was told last week that I might have cyclic cushings. I am pending an MRI and more 24 hour urine tests to complete the diagnosis. This comes after years of being told I need to eat better and exercise more. It would take me an entire blog to explain my history, but in the pictures of your daughters you've shown, I can tell you I have the exact same pictures from my childhood. I remember at 12 years old weighing 200+ pounds and wearing a size 16 dress. I am one of four siblings and we all ate and did the exact same things, but I was always severely obese whiles they were normal. When you said the doctors didn't believe the calorie counting, it hit hard because I can't tell you how many doctors (all of them, including my endocrinologist that is now looking at cushings because I came crying into her office with pictures and a year to year outline of symptoms because of frustration) said I need to diet and exercise more.
I will pray for your daughter and I hope doctors become more aware of this disease and look for it in children. I pray that parents will find out more information if they see something odd with their child's weight. My parents didn't know better, they thought I might have been sneaking snacks at night.
I was diagnosed with hypothyroidism and PCOS and after 5 years of treating those (levothyroxin and birth control pills) none of my symptoms went away.
I feel your daughter's frustration. I feel your frustration and I pray everything works out.
Hi Jenn, if there is anything I can do to help please feel free to email me at rbibby@surewest.net. Put Cushing's in the subject line so I won't think its spam. Do you have a support system in place to get you through this?
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