| Today is ...and it's about time there was some support for Cushing's!|
Kelsey's saga began in her eighth grade year in junior high, and if there
is one thing a 13 year old girl doesn't need is Cushing's at this age! Kids can
be so mean! I think she was called names from "Mighty Joe Young" to "Stretch"!
Kelsey's saga began in her eighth grade year in junior high. Cushings at any age would be hard enough to deal with, but at age 13 it was devastating. Kids can be so mean! I think she was called names from "Mighty Joe Young" to "Stretch"; however, these ignorant people were just a few. We had a tremendous amount of love and support from many others.
Kelsey first started to gain weight, and having irregular periods. Knowing something was wrong, we began to seek a diagnosis from a local gynecologist. She ran several test, and diagnosed her with polycystic ovary syndrome and started her on birth control pills. Needless to say, the next phase to come was the hair growth all over her arms, back and face. The poor little girl would refer to herself as a looking like a gorilla. Then the stretch marks came, but in the most unusual place, the bottom of her legs! Not being satisfied that this was polycystic ovary syndrome, I started my search for a pediatric gynecologist at Children's Medical Center in Dallas. Dr.Karen Bradshaw at Children's took one look at her and said, "with her moonshaped face, hair growth, weight gain, and stretch marks, I believe we are looking at Cushing's Disease". Thank God for her!! I have now found out by this website that the diagnosis is the biggest battle!
So, from the diagnosis, we went through months of test to confirm the Cushings, and to find the tumor. An MRI picked it up on her pituitary and surgery was done to remove it. After surgery she developed diabetes insipidus, but it cleared up after a day or two. Once home she did great! She lost weight, and began her road to recovery without any medications; however, a year and a half later the tumor recurred! She once again was sent through the MRI's and the 24 hr. cortisol test, and then surgery was done again. The doctor was optimistic that he got it all, and five years of no problems we were sure he did too. Well, just when we thought for sure this thing was gone, it returned!
At age 20 , we had to find her new doctors because she started as a child and was now an adult. This alone was very trying, the first endocrinologist we went to made me feel like I knew more about this disease than she did. The doctor ordered a 24 hour urine corisol test which came back elevated! From there she had to do two more 24 hr urine cortisol test, blood work, dex, saliva cortisol, and 2 MRI's to confirm it. One of her worse symptoms this time was anxiety attacks, and aches and weekness in her arms and legs. We really didn't notice these problems until she go on birth control pills (Yasmin), and we just knew that was what the problem was, but none of the doctors thought it was. The neurosurgeon saw a shadow on the MRI that he thought was the tumor, so he was sure it was back. The last time she had surgery we were told if the tumor returned there would be no more surgery, but radiation, however, Dr. Mickey thought she could take another surgery. So, a month and a half after her wedding she had her third surgery. After surgery, Dr. Mickey came to the waiting room and I could tell by the look on his face that it wasn't good. He said they could not find the tumor. My heart just went numb, and I hated to tell Kelsey that they couldn't find it, because it meant that she went through all of that for nothing. So, not much hope was given to us for a cure, but in the days to come her cortisol did drop. It didn't bottom out to a zero, but did get as low as an 8. It is now three years later, and she is doing very good. Her cortisol remains normal. In the hospital, we kept telling the doctors that we were going to go on FAITH that God took care of what they could not see, and still three years later I think they think we just got "lucky", but we know better.
This disease has been so much a part of our lives in the past ten years! It has tested our faith, and made it stronger, and it has also built a stronger family bond. One of the hardest parts of being mom was when I had to make her go to school when she didn't feel good, or when her self esteem was suffering from the weight or hair growth, in fact it broke my heart; however, life doesn't stop or slow down, and we have to keep on going! I wasn't going to let her give up or give in! Through it all, she kept active in school and was a twirler in the band, National Honor Society, Cheerleader, Peer Assistance and Leadership, and many other activities. She is now a successful hairstylist and happily married. What she has had to endure has made her the wonderful compassionate person she is. It has built her character into this most amazing young woman! She is truly an inspiration to my life, and my "Gift from God". We are going to continue to keep the faith!
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