CSRF Members' Letters - Under Age 18 at Diagnosis

Code 2149  Spring 2007 GA
My oldest son Easton was diagnosed with Cushing's disease in December 2006. Easton has always been a very healthy, active boy. He has always been rather small, not abnormally so, just little. He was always so skinny that I bought him slim jeans and they still fell off of him. He started putting on a few pounds in winter of 2005, not a lot; just enough to make me think he was filling out nicely and it was getting a little easier to buy him jeans! In April 2006 some family members commented on how full Easton's face was getting. I attributed it to the fact that he 11 years old and probably entering puberty.

I remember seeing pictures of his Dad at that age and he was a little chubby, so I figured it was probably normal growth. By the end of April I was starting to get a little worried, he was steadily gaining weight but it was like most of it was in his face. He looked swollen. Our nephew came to visit and asked me if Easton was on medication containing steroids. He was not on any medication at all. The last week of April I took him to see his pediatrician. He had gained 10 pounds since the last time he had seen her. It had been almost a year since his last visit; she didn't feel like 10 pounds in a year was that much. What she didn't realize was that he had gained those 10 pounds in about 6 or 7 weeks. She did say that he had a "cushingoid appearance". She did some lab work. The lab work was pretty normal; his blood sugar was high so we did a fasting glucose test which came back ok. She wanted to wait a few months and see him again, she said if he gained anymore weight, even a few pounds, she would do some further testing and probably send us to an endocrinologist. Our next visit was in August. On the way to the doctor Easton said "Mom, I know I've gained more than a few pounds" and he was right. He had gained 12 more pounds! He was gaining more than a pound a week. Our doctor was shocked. She referred us to an endocrinologist immediately. It was several weeks before we could get in to see him. In the mean time Easton was changing every day. He would wake up in the morning and not be able to wear the pants that he wore a few days before. He had horrible acne; he was tired all the time and complained of headaches almost daily, his tummy and face were getting bigger and bigger but it seemed like his arms and legs were not. He had, what I know now is called a buffalo hump at the back of his neck, his skin was changing and he was getting stretch marks on his sides and legs. We started researching Easton's symptoms and Cushing's disease kept coming up.
By the time we were able to see the endo I was pretty certain that Easton had Cushing's. The doctor was not so quick to agree with us. He said that Cushing's disease was so rare in children that it was highly unlikely that that was what Easton had. He said we needed to look at Easton's nutrition. I told him I didn't care how rare it was and that his nutrition was not the problem. He was gaining several pounds a week at times, there was no way he was eating enough to support that kind of weight gain. He agreed and we started testing. We started 24 hour urine collections for several weeks. It was 4 or 5 weeks before we heard anything. We were interested in his cortisol level, the doctor said it should be around 15 or 17, the first test showed it to be about 500!! After several more test including a cat scan and an MRI, our doctor referred Easton to The National Institutes of Health in Bethesda Maryland. We made our first trip there in December 2006. We spent a week there for testing and he was diagnosed with pituitary Cushing's disease on December 17th 2006. His surgery was scheduled for January 31st 2007. The next month was very difficult. Easton continued gaining weight and having other physical symptoms. I think the hardest part was his emotional state. He became very withdrawn and depressed. Not wanting to hang out with friends or go to school. Not only was he gaining a tremendous amount of weight he also hadn't grown in height in almost 2 years! His weight gain totaled, at the time of surgery, 61 pounds in about 1 year. Easton had his surgery on January 31st, the whole tumor was removed and he his doing wonderful. The changes I'm seeing in him are amazing. He is starting to look like the Easton we all remember and best of all starting to act like himself again. Since his recovery in February 2007 Easton has lost 35 pounds and grown almost 3 inches! He is enjoying playing baseball racing his bike and hanging out with his friends this summer. Our many thanks go out to our doctors and the staff at The NIH. We would have never made it through this without the support and friendships we've found through CSRF. Thank you all so much!!

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Monday, August 12, 1996 was another hot summer day in Los Angeles. We had just returned from Los Angeles Children's Hospital where my son, Dylan, had just had another MRI on his head. Because Dylan had to undergo anesthesia, he was feeling very tired. The phone rang. It was Dr. Thomas Roe, head of the endocrinology department, with whom we had spent the morning. He had some bad news. He gently broke the news that Dylan had a tumor on his pituitary gland, a condition called Cushing's Syndrome and that he would require brain surgery. He had already contacted Dr. Martin Weiss, Chairman of Neurological Surgery at USC University Hospital.

With that news, everything in our lives changed. Dylan had just turned 8 years old. My sixth sense was on overdrive and I had known that there was something very wrong physically and emotionally with my son. His father and I had begun a nasty custody battle a year prior and within months, Dylan had gone from 75 pounds to over 125 pounds. His skin color was orangish, he had a mustache, and he could hardly run while playing softball. I kept on wondering if Dylan was eating for emotional reasons but as spring of 1996 rolled on, I knew things were very, very wrong.

In the days after getting the news, the person who made me realize what reality meant was Dylan himself. The telephone was ringing constantly and I was hiding in the pantry or closets talking to whomever. Dylan opened the door after one of these calls and said to me, "Mom, this is my life. No more secrets." With that statement, Dylan became the focus again and he helped us plan the next six weeks as we awaited his surgery day. On October 3, 1996 Dr. Martin Weiss and his extremely talented team operated on my 8 year old son. When it was over and he was in the recovery room everyone in the room held hands circling Dylan and prayed for total recovery. The surgery was a success. The recovery was very long with set backs and baby steps. After staying in the hospital for 5 days, Dylan was discharged. He was in third grade. Prior to surgery, we had arranged to have a tutor come to the house for three months. There were days when Dylan was so sick, he would be in a fetal position crying and the tutor could only read him a story. His third grade pals stopped by a couple of times a week after school to cheer him on. And on Halloween 1996, I drove Dylan lying in the car from house to house to trick- or- treat as he was too weak and ill to walk. By January 1997, Dylan was well enough physically to resume school.

How long was recovery? We saw Dr. Thomas Roe for the last time in December 2000. He felt that Dylan was totally on his way to complete physical recovery, with both his height and weight in the normal range for a child his age. However, his emotional roller coaster continued through his middle school years when we finally got him help for anger management and to provide a place where he could safely talk about what had happened to him and about how scared he had been.

The best medicine Dylan received was playing football for his high school, John Marshall High School in Los Angeles. He started as a freshman learning about physical conditioning, teamwork and leadership. During his senior year as co-captain, he led his football team for the first time in the school's 75 year history, to the City Finals played at the USC Coliseum. Quite an accomplishment for a child who beat the odds with Cushing's Syndrome. Football gave him confidence and control which the disease had taken from him at a very young age.

Dylan graduated from John Marshall High School on June 28, 2006 with a 4.3 GPA. He was chosen and gave one of the graduation speeches to his 900 classmates at the Greek Theatre in Griffith Park in Los Angeles. His message was "NEVER, NEVER, NEVER GIVE UP!" A message he offers to all of you.
Dylan is now an 18 year old freshman at the University of California at Berkeley, majoring in molecular cell biology. He hopes to become a doctor. He was accepted by seven colleges (all the University of Californias, USC, University of Michigan, Claremont McKenna and Occidental) and wait listed at Darthmouth and Pomona College. He has been honored by Children's Defense Fund's "Beat the Odds Program," College Match, National Football Foundation (his name is forever inscribed into the College Hall of Fame at Notre Dame), Tim & Tom Gullikson Foundation Scholarship (for survivors of brain surgery), and selected as one of the Gates Millennium Scholar for 2006 ~2007 which offers him scholarships for 10 years ... making his dream of becoming a doctor a possible reality.

The following is an essay Dylan wrote on his college application last year summing up his feelings about where he has been and where he intends to go. Dylan is one of the lucky ones. His diagnosis 10 years ago changed all of our lives and have made us grateful for what we have. Ten years to the day Dr. Roe called to let us know Dylan had Cushing's Syndrome, Dylan gave an eulogy and read scriptures at his grandpa's funeral in Barre, Vermont. How proud my father, an anesthesiologist, would have been!
I know the sheer fear of going through pediatric Cushing's Syndrome and if anyone is in need, please feel free to contact me. Back in 1996, there was no one I could talk to which made the journey so much more terrifying and lonely. To those of you who are battling this disease, just remember that it took a long while for the tumor to grow and it will take time for the body to readjust to being Cushing's free. It does get better ... much, much better.

A complete essay by Dylan responding to the following question on his college
application:
Describe a setback or ethical dilemma that you have faced.
How did you resolve it?
How did the outcome affect you?
If something similar happened
in the future, how would you react?

During one's life they are bound to face setbacks. In my life, a major setback I faced was being diagnosed with Cushing's syndrome. Because of that disease, I was a short, fat kid and I would constantly be teased and harassed by my fellow schoolmates. My parents would put me on diets and there would be no change. My mom then took me to several physicians, each of whom had no explanation to why I was not growing and why I could not lose weight. Finally, at age seven, one doctor conducted an M.R.I. on my skull and discovered a tumor growing on my pituitary gland. I was then told that the tumor was causing my pituitary gland to produce hormones in an unbalanced fashion. These wrong amounts of hormones caused my height to be stunted and to prevent my body from losing weight. I was also told that I would have to have a brain surgery to have the tumor removed or I would be dead by the age of twelve.

The idea of having brain surgery is scary for anyone but, as a seven year old being told they are going to cut open your head is terrifying. Despite being as scared as I was, I had no choice but to go through with the operation. In the weeks leading up to the surgery, I went to Los Angles Children's Hospital on a weekly basis to have blood work done. Then, in the two days prior to the operation, I had to stay at the USC Hospital and have more blood work done on me every three hours or so. I was told the surgery went well. The only worry the surgeons had was that they might not have gotten all of it. From there on, I was in a recovery stage. Everyone would have to wait and see if my body would balance itself out. Since then, it has. I now stand at 5' 11" and weigh in at 170 lbs. I am fit, athletic, and even am the defensive captain of my school's football team. I made a full recovery.

I would say that the outcome of this setback gave me the ability to look at what I would want to do with my life. I first reflect on the elementary kids who made fun of me. I have put all of that in the past and am now good friends with those who attend my high school. Then, I think about how it changed my mindset. Rather than living a life scared to try something, I am always looking for new, exciting challenges. I was given a second chance at life and I want to live life to the fullest. The last way that this setback has affected me is that I have an increased desire to help people. When I see my friends feeling discouraged, I do my best to help them through their problems. I also try to give back as much as I can to the community. I volunteer at my church and I am a member and officer of several community service oriented clubs at my school. Most of all, it has made me want to pursue a career where I would be able to give as much as I could, just as the doctors who gave me a second chance did for me.

Lastly, if this were to happen to me again in the future, I do not feel I would be terribly bothered by it. I have decided to live my life to fullest and to the best of my ability. All we, as human beings, can do is strive to live our lives the best we can and to enjoy them. I have been given an opportunity to do this and I will take advantage of it. So, in the event I was to face this setback again, I would have no regrets. I will have lived my life to the fullest. It would just be another challenge to overcome.

Note - Dylan was videotaped and interviewed at UC Berkeley by the Tim & Tom Gullikson Foundation and all his medical papers have been donated to the Children's Hospital in Los Angeles in hopes that medical students can learn from his case.

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Code 2089  Summer 2006 Under 18 at diagnosis and adrenal tumor
How Do We As Parents Deal with Our Childrens' Cushing's?  In August of 2004, our lives changed completely.  I took our five year old son to his pediatrician for his check-up for kindergarten.  Everything looked fine and all looked normal.  Three weeks later, I called his doctor and told her that John was going through puberty.  He had a mustache, pubic hair of a boy a lot older and he had gained 15 pounds in the weeks since she had seen him last.  She told me to bring him back into her office the next week, which I did.  As soon as she saw the mustache she looked at me like ah oh being over protective again.  I asked her to pull down his jeans and a look of disbelief came over her face.  She immediately went into her office and then came back doing this twice.  She told me they needed to take some blood and she was sending us to have a bone age scan done.  A couple of days later they called and told me that the bone age scan showed that he had the bones of an eight year old.  I told them I needed an Endocrinologist now; I did not want to wait on the blood results.

I took John into see the Endocrinologist as soon as I could get the first appointment but in the mean time I had to take him to have an ultra sound done.  We were thinking we would go right back home but we were asked to wait for a few minutes.  His wonderful pediatrician was on the phone and she told me, “You know me I don’t beat around the bush, John has a tumor and it has to come out.  There will be an oncologist in shortly to talk to you”.  He came into the room as we were speaking and then we went over to his office and did a complete workup on John.  I was in shock -  all of my family dies from some type of cancer. “My God, this can not be happening to us”.  In sheer devastation I called my husband who was on a job in Nashville, and my mother who lives in Maryland and told them the news.  My husband told his co worker he had to come home with or without him.  When they got back home he called and wanted to come to the hospital but I told him the CAT scan was done and we would be on our way home.  I was told John had a tumor the size of a baseball on the adrenal gland and it had to be removed.  This was the reason my son had stopped growing at 43” tall.

We had to take John to a cardiologist and we then found out he had a high blood pressure at almost stroke level.  He was put on medication to bring it down but within a few days we were told to do the surgery.  The pressure would not come down any further until the tumor was removed.  We met with the surgeon and she told us that the surgery would take about 6 to 6-1/2 hours so we watched our little boy go into the double doors and then we waited.  Two hours later “Dr. Frankenstein” which John nicknamed her lovingly was back in the waiting room with us.  When I saw her I just knew they had opened him and closed him back up.  She told us they got it all and it was still encased but they did have to remove the left adrenal gland.  John’s body had been making three times more of the hormones than it should have been.

We stayed at the hospital for only three days.  Then when we came home John had to continue on Cortisol for a year to help the right adrenal gland start functioning again.  We had hoped that what the doctors had told us would be true.  Give John’s body time to catch up with his brain and everything will be alright.  It has been almost two years.  John has had a horrible time in school.  He has very poor motor skills and has rages of anger and frustration.  He is on medication to help with his inability to focus.  He is also on medication to help him sleep.  We have been told that his brain just can’t slow down to allow him to sleep.  We have gone through three psychiatrists none of which have been able to help us with the problems John has.  We now have an intervention group helping with John and a great psychologist he sees weekly.

I am anxious to find out about other parents experiences and help anyone that I can.  I’m also sending out brochures and letters to help raise the awareness of Cushing’s in and around my community!  I’d love to hear from others.

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Code: 1197 Spring 2005
I remember one afternoon my son came home from his first day of first grade and said to me….”Mommy, what does “chubby” mean? Immediately, my heart sunk…already at the age of six my son was learning the cruel reality of how society views overweight individuals, even young children.

At the age of six, my son was alreadyshowing obvious signs of the classic look of a Cushing’s patient, although I had never heard of the disease before. In his kindergarten year, and every year after, his weight gain increased by approximately 30 pounds per year, despite the fact he was playing basketball, baseball, and skateboarding. I watched his weight like any other concerned mother would do, and tried to manage it on my own. Soon, it was apparent that something was very wrong with my child, however I couldn’t really pinpoint what it was.

He was complaining of headaches, and also he was extremely stiff every morning. He would complain of his joints aching, and he reminded me of a little old man first waking out of bed. I went to our local pediatrician, and he looked at Stephen, and was concerned with the weight gain. He referred Stephen to a specialist, and in turn began the unending circle of numerous doctor and hospital visits. The endless poking and prodding by doctor after doctor for over two years was incredibly disheartening. I had noticed that Stephen’s height had not changed during this two year period, and I kept telling the doctors over and over my concerns. Several doctors told Stephen, that he ate too much, and they accused me of over feeding him, and sneaking food to him. They referred me to several nutritionists, and even suggested that Stephen have a personal trainer to get the weight under control. Several comments were made over the course of the two years that Stephen may have Cushing’s, but all the doctors rejected that thought, and said that since Stephen was a male and a child, that it would be extremely rare. The doctors had ordered urine free cortisols, dex tests, and several blood analysis tests, only to tell me that the likely hood of Stephen having Cushing’s was so rare that all completely dismissed it.

With the help of the Cushing’s Support and Research Foundation they were kind enough to connect me with a family in Australia who had a boy recently diagnosed with Cushing’s. I immediately contacted them, and instantly realized I was not alone, and that the mother had gone through the exact same stress of fighting to manage her son’s health care as I had. With the constant support from this incredible family, I found the strength to not give up and keep fighting for the answers to my son’s illness. CSRF also referred me to the brain tumor center at San Francisco University, and finally the correct 3d MRI’s were ordered which proved a tumor on the left side of Stephen’s pituitary gland. They informed me to contact the National Institutes of Health, and speak with Dr. Chorusus. Within a month of contacting the NIH Stephen and I were on a plane to Maryland, and soon after the correct diagnosis was confirmed. “Cushing’s Disease”. Stephen in fact did have an ACTH producing tumor on his pituitary gland. Stephen spent almost a month at the NIH, and under went transsphenoidal surgery in September of 2000. Although he was quite ill for several months afterward, and remained on replacement therapy for almost two years, he beat the odds of having this terrible disease. Stephen is now almost 6 ft tall, and is a happy healthy 13 year old, who enjoys life, and has learned the gift of compassion from his experiences of fighting this disease.

I truly believe without the help of the CSRF and the Aulbury family in Australia my son would not be here today. My undying gratitude goes out to the National Institutes of Health and their incredible staff of Dr. Chorusus, Dr. Stratakis, Meg Keil, and the superb nursing staff, whom saved Stephen’s life.

For anyone out there who is experiencing the pain of fighting for your loved ones health, don’t give up! The answers are out there, and there are people who are placed in our lives to guide us through. If there are any mothers who would like to contact me for support please feel free to!

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Code: 1174

4-18-99

My third daughter, Sam was born five weeks early on March 22, 1999. While she was only 5 lbs. 11 oz, and 19" long, the startling thing was that her cheeks seemed to be three times larger than normal newborns. On day three of Sam's life, the NICU nurse noticed increasing blood pressure and a renal problem was suspected. Sam then endured many tests, but all came back within normal limits. An endocrine problem was suspected; a catheter inserted to collect a 24-hour urine, but the lab contaminated the sample and when the test was repeated, Sam developed a urinary tract infection. At that point, the test was halted, as the doctors didn't think it was "necessary" anyway. Sam was started on two different kinds of blood pressure medicine, but her blood pressure continued to rise. By April 3, we had had enough and insisted that she be transferred by ambulance to Seattle Children's Hospital. Once there, she was seen by at least 50 doctors, her hematocrit had fallen from 45 at birth to 29 due to all the blood draws. She maintained a dusky grey hue and was rarely conscious.

The head of Endocrinology noted that Sam appeared Cushinoid and another battery of tests began including a catheter for collecting the 24-hour urine sample. Newborn, premature, Sam was fasted for four hours, injected with Dexamethasone, fasted another hour and her hematocrit dropped to 24. She was released from the hospital pending the test results and once at home, she was awakened every two hours to consume one ounce of breast milk and have her blood pressure monitored. She slept upright on my chest; she couldn't lie flat due to the immenseness of her face.

8-5-99

At three weeks of age, she was pale, thin, vomiting most of the milk she was given, and was rarely awake. We realized that some proactive action was required and began to wean her from the blood pressure medication. Her blood pressure remained steady and some of the puffiness seemed to disappear. When we returned three weeks later for the test results, the doctor didn't have any results and described to us the tests he wanted to do, which were the ones that had already been done! On top of that, he asked permission to draw blood from Sam's jugular vein, since the others had all but collapsed. I tore up the permission form and walked straight out of there with my baby. The doctor did call later, "Sorry, we found the results and they are normal".

The most remarkable thing is that by the time Sam was about five months old, most of the symptoms had disappeared. Her blood pressure was normal and, while frail and thin, she was responsive and started to eat more. I did research on the Internet and found that Cushing's could cause Sam's problems. Things stayed normal until February of 2001. Then she began eating voraciously, gained 10 pounds in 10 days, got acne, a buffalo hump, and was constantly wet with urine. Back to Children's Hospital, where Sam was tested for a variety of genetic disorders; all of which were normal. Again, after five weeks, Sam's features returned to normal. While we were thrilled that the symptoms resolved, our entire family was becoming very frustrated by lack of a diagnosis.

2-11-02

In February of 2002, we seemed to have a healthy, happy child who was growing up normally, but then things changed again and Sam went into another terrifying cycle of weight gain and hypertension. By March, we barely recognized our own child. At this point, I realized that Sam must have some kind of intermittent Cushing's. So, armed with that information, we went back to Children's Hospital-this time I just walked into the clinic and told the receptionist that I had to see the doctor today! The doctor was spitting mad and told me Sam couldn't have Cushing's because she wasn't short!! (Poor growth with weight gain is associated with childhood Cushing's.) Too many french fries he said so we were referred to a nutritionist-not a pleasant experience. To this day, I think that nutritionist walks the halls without a head following her encounter with me.

3-10-02

Even though Sam's symptoms were again resolving, we asked for a referral out of state to Phoenix Children's Hospital. The doctor there concluded that there were many mentions of Cushing's in Sam's records, but no one had put the pieces together yet. He was the first to mention cyclical Cushing's and explained that Sam could only be tested during active cycles. So, home we went frustrated that she couldn't be tested, happy that we now had a name for what was wrong, and confident that she would be diagnosed during the next cycle. Our instructions were to return to Arizona as soon as we saw the symptoms returning.

11-20-02

Unfortunately, we didn't have time to do that with the next cycle. In November, 2002 Sam very suddenly developed hair all over her face, profuse sweating, increased urination, high blood pressure, joint pain, etc. The day before Thanksgiving, I took her to the doctor and he said, "Get her to the emergency room, NOW". Sam was going into diabetic shock, but she didn't have diabetes?! The doctor in the emergency room seemed concerned and genuinely interested in Sam's strange history. We were sent home with three bottles for 24-hour urines. Since Sam was not potty trained at night and certainly not when symptomatic, I had no choice but to go to war. I woke Sam up every hour, had her stand up on her little bed and pee in a bedpan-shaped bowl. By dawn, we were collecting urine in our sleep, literally. And we never missed a drop! The test results came back an astonishing 2,960 with normal being 2.9-24. Yes! We had a diagnosis! But, not so fast-The doctor called and said he had further reviewed Sam's records and there was concern about Munchausen's by Proxy. I, the mother, was being accused of giving steroids to my daughter to make her sick! I was questioned about the presence of steroids in the house, whether someone else, for example her asthmatic sister (age 11) could be giving Sam steroids. We were outraged!!! At this point, Sam's Dad built the web site http://www.qatworks.com/sam/gunther.htm that literally saved Sam's life since it clearly showed the progression of symptoms.

11-29-02

In December of 2002, Sam was hospitalized for four days to repeat the tests and finally get a diagnosis, and I think to be sure we weren't giving her steroids. She was in an active cycle, and we were pretty much cleared; and we finally had Cushing's as a diagnosis! About that time our doctor heard from Dr. Stratakis at National Institutes of Health (NIH) in Bethesda, Maryland. He was pretty certain from our web site and the test results that Sam did indeed have Cushing's, possibly a rare form called Primary Pigmented MicroNodular Adrenal Disease (PPNAD). So, on Valentine's Day, 2003 our entire family traveled to NIH for further testing and hopefully, a long awaited resolution. Sam was admitted and tested and even though she wasn't in an active stage, she failed to suppress under dexamethasone. The suspicion was PPNAD but the solution would be a bilateral adrenalectomy, and once again, we were told that she needed to be tested during an active stage before surgery. So home we went.

3-22-03

It started on the airplane on the way home. Sam ate the entire manicotti. I knew this meant trouble-why would anyone eat manicotti on an airplane?? It continued once we were home, and once again Sam and I were up all night for two days collecting urine. This time the lab lost the samples, so we did it again. Finally, we had the two, high, 24-hour urines, numbers in the 3,000s this time; and we needed to return to NIH. Arrangements were made to travel to NIH on March 29th. For the first time in Sam's life I found myself hoping this cycle would last. The last several cycles had done so much damage to her young little body including osteopenia and eye muscle damage from which she may not recover completely. Thickened adrenal glands were found on a CT scan. Sam underwent a bilateral adrenalectomy on April 8, 2003. She spent 10 days in ICU but thankfully she had no pain thanks to an epidural that was left in place following surgery.

3-22-04

I wish I could say that our story happily ends here, but while Sam's Cushing's has resolved, she has developed a nodule on her thyroid which might be consistent with Carney Complex (CC), a genetic disorder not limited to just adrenal enlargement. The most life-threatening development in CC is the formation of cardiac tumors, so Sam is monitored every six months by a cardiologist and continues to have her thyroid checked. We return every six months to NIH for follow-up. I can't thank Dr. Stratakis and the nurses and staff at NIH enough. Sam is now doing well and is starting Kindergarten. It breaks my heart to think that other children and families could be going through what we did. Please let me know if I can be of help to any other parents.

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Code: 984 I developed Cushing's at the age of twelve and was not diagnosed until almost fifteen. A relative I had not seen in quite some time noticed I was rather obese and had poor growth in height. Since my physical changes had occurred so gradually, my immediate family had not realized the outward appearance had been altered.

In order to determine if I actually had Cushing's Syndrome, many blood and urine tests were performed - blood tests were done on a regular schedule for one week (I was hospitalized during that time) and urine tests were done daily. Due to the time involved in testing, I missed a significant amount of school. After almost a year of thorough physical examinations, hospital stays, and many tests, the endocrinologist from All Children's Hospital (St. Petersburg, FL) diagnosed me with Cushing's Syndrome.

Once it was determined I had Cushing's, the decision for me to undergo surgery was made almost immediately. However, it is worth noting here that when I underwent surgery, the doctors did not find a tumor; so they just cleaned the area very well. After surgery, I remained in the hospital for a week and then went home where I recovered nicely. Once home from this ordeal, the worst finally behind me, my mother and I were still in contact with the doctors and there were trips to the hospital for continual blood and urine testing (for follow-up); this eventually tapered off. The post-surgery medications also decreased gradually. I followed-up with the endocrinologist annually and always received a clean bill of health. Even after I turned eighteen, it was recommended I continue to follow-up annually with an endocrinologist, which I have not followed through with - to this day, at age 33, I believe I remain sign and symptom free of Cushing's.

Previous to this diagnosis and even for a while after, I had a very difficult time attending school because of the open ridicule I faced from my peers and even a teacher, all because of my physical appearance. I learned to deal with my condition and the fears associated with it by listening to my doctors and by accepting the fact that I had to have surgery to get better. I was also pretty open and honest with my family about my feelings. I had a lot of support from my family and that helped me tremendously in dealing with my low self-esteem. It was very difficult for my mom to watch me struggle with this condition and to watch me endure all the tests and examinations. There were times away from me, when I know she would break down and cry, but in front of me, she was always my pillar of strength and support. I also know that my mom had the support of her parents who were always there to help with anything that was needed. I also believe that my faith in God sustained me through the Cushing's experience and that my faith continues to be a source of strength in my life today.

After Cushing's, I came out of my shell, so to speak. I went on to college, received my Master's degree in Social Work in April of 2000 and have been in the field for approximately 4 years. I would very much like to help any one struggling with this disorder, particularly families who are dealing with the illness of a child. Please feel free to contact me.

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Code: 928 Date: May, 2001.
I have had this letter in my head for a while now but not until recently was I able to even think about actually writing it. I am a 17-year-old senior in high school. I had Cushing's Disease and had surgery at NIH in March of 1999. I am recovering and looking forward to a complete recovery! Since I know that you have heard many stories, I will spare you of hearing yet another.

My mother is a subscriber to the Cushing's newsletter. It was rather neat to see a picture of my three doctors on the cover of the summer '99 issue. Dr. Lafferty, Dr. Stratakis, and Dr. Chrousos have followed me as a patient at NIH. After reading the past newsletters, I noticed that the emphasis is adult-oriented. While I was on the pediatric ward at NIH, I met four other kids with Cushing's and heard stories about many more children from the nurses.

First of all, I think that the board does a great job of putting the letters together and it is very kind and thoughtful of them to spend many hours on them. I feel that I could be of some assistance to the board for ideas on a group that has trouble publicizing awareness for Cushing's. That group of people is children. I know of many children who were diagnosed by persistent parents and the Internet, instead of doctors.

In your summer '99 newsletter, it was suggested to publicize Cushing's in weight loss clinics. I can see where this would be very helpful to adults; however, not many children are referred to those types of places. Pediatricians need to know about Cushing's. Too often weight gain is attributed to a "phase" that a child goes through that their growth will "even them out." While this "phase" may be true for many children, you know all too well about the few that slip through the cracks, the people with Cushing's.

For my science project last year, I made a presentation about Cushing's. Adults were in attendance too and afterwards a woman came up to me and swore that her sister had Cushing's. That comment made me glad that I had decided to share my experience with others, so that in turn others may be helped.

I also think that it is very important for children to focus not on their past (with Cushing's) but on their future and what they have accomplished since receiving treatment, so that they can set a positive example for kids who have not received treatment yet. This could be accomplished by organized chats on the Internet or establishing a pen pal program that pairs children new to the disease with children who have been cured.

I think that it is crucial that the Cushing's Foundation continue to make Cushing's known on more medical web sites, since I have read numerous times in the Wall Street Journal about how more and more people are turning to the web for answers on medical questions.

So in closing, I want to again thank you very much for your continuous effort to get Cushing's out into the open and to encourage you to continue to make more doctors aware of Cushing's. Please consider my proposal, I would like to serve as some kind of child representative so that I can help other kids who are going through or who have gone through Cushing's. I would also like to spread awareness for Cushing's but I know that I need help to achieve this goal.

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Code: 884 Date: April, 2000.
I was diagnosed with Cushing's Disease when I was ten years old in fifth grade. The years before I was diagnosed were terrible! I was teased all the time about my weight. My doctor kept telling me that I was just a big girl. He didn't seem to worry that I wasn't growing and that I kept gaining weight. I barely ate anything and I exercised excessively. The foods I ate were healthy, not junk food.

Finally my Mom started to take action. She found an endocrinologist to check me out. The day of my appointment, the endocrinologist diagnosed me with Cushing's Disease. He told my Mom, Dad, and me what would happen next. I couldn't believe what was happening. I knew there was something wrong with me, but not like this.

The months that followed were extremely hectic: visiting doctors, giving blood, meeting my surgeon, and taking x-rays. To top it all off, I was still in school, so I had homework and soccer.

When my surgery day came, I was relieved and scared. Relieved because I would be getting this over with, and scared because I had never had surgery before. My grandparents and parents were there and it seemed they were more scared that I was.

My surgery took three hours. I was in recovery for one hour. Unfortunately, the surgery was not 100% successful. I still had too much cortisol. I was losing weight, though, and didn't have as round a face. My double chin was gone and I was growing! My surgeon wanted to wait a year to see if my levels would go down.

Well here I am still recovering one year later. At first, we decided to have radiation therapy because there is no sign of a tumor on my pituitary or adrenal glands, but then my surgeon changed his mind. I had my second surgery in December, 1999 and it was successful in removing all of the tumor!! Finally my 4 years of suffering is coming to an end. I am loosing weight, feeling better, taking no medication and actually went for soccer try-outs for the club soccer team. I would welcome any calls!

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Code: 841 Date: December, 1998.
In 1996 when I was 16, I was diagnosed with Cushing's Syndrome. Before being diagnosed I was seeing a dermatologist for a severe acne problem. The dermatologist noticed that I had a more than average amount of facial hair and he and my mother assumed it was due to me having some Mexican heritage. After a few months of acne treatment, the dermatologist suggested that I go to an endocrinologist. I had also been seeing a pediatrician because my menstrual cycle had stopped. After numerous tests, I was finally diagnosed with Cushing's. In the summer of 1996 I went to Portland for transsphenoidal surgery. The first surgery was unsuccessful and the doctors and I agreed it would be best if the surgery was repeated. The second surgery was thought to be a success. After spending 11 days in the hospital in Portland, I was allowed to go home. Soon after the second surgery all my symptoms were reversing and I felt much better. I was then able to live a normal healthy teenage life again.

In the summer of 1997 I noticed that my appetite was decreasing and I started getting severe heartburn. I was always complaining about not feeling well until finally my parents took me in for a doctor's appointment. After a blood test, it was determined that I had a relapse of Cushing's. Once again transsphenoidal surgery was recommended and once again it was unsuccessful. At that point the doctors told me I basically had two options, radiation or a bilateral adrenalectomy. Being 18 years of age I decided to have the adrenalectomy because the radiation therapy would more than likely destroy my ability to have children later in life. At this point I still would like to have that option open. In February, my adrenals were removed and now I am forever dependant on hydrocortisone and florinef.

It has been a difficult struggle for me, especially in the last year. I am a senior in high school and am enrolled in all the advanced classes. I was constantly stressed out, tired and my grades, which were once mostly A's, were slipping. None of my teachers fully understood what I was going through or what my situation was even though I tried to explain it to them. It has been hard work getting caught up in all my classes after missing so much school for doctors appointments but sure enough, I am passing all my classes and I got accepted to all three colleges I applied to.

For everyone that suffers from Cushing's, or any other hardship, I would like to say that you can make it if you have hope and if you're strong. As a nurse in San Francisco once said to me after my third unsuccessful surgery, "it's just another bump in the road." Things get better. Trust me, I am living proof.

If anyone wants to share their experience or needs encouragement, feel free to contact me.

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Code: 337 Date: Spring, 1997.
As a young girl from Southeastern Kentucky, my dream was to play basketball for the Kentucky LadyKats, however, the master plan for my life turned out to be much different. Having Cushing's disease and three surgeries, made me see that my childhood dream was gone forever.

My basketball dream really began in the fifth grade when the coach placed me on the school's team. In the seventh and eighth grade, our team won two county championships and I received Player of the Year, All County Team, and Most Valuable Player. I just knew that I was on my way to achieving my dream!

As a freshman at Clay County High School, I was privileged to be on the team that surprised the state, when our team won the State Tournament in three overtimes against Clark County. Adding this State Championship to the two County Championships, and the fact that I was a starter as a junior, left me no doubt about my future.

At this point, my life began to take a drastic turn. I was sick constantly and could hardly run up and down the court. A local doctor diagnosed me as a borderline diabetic and instructed me to eat a certain diet and take vitamins; however, as I began my senior year, my symptoms of high blood pressure, high blood sugar, urination problems, facial hair growth and extreme fatigue continued.

Since my condition wasn't improving, my coach and a teammate's father, suggested a visit to a Lexington diabetes center. The first visit brought no significant conclusions. After a series of tests, the doctor discovered a tumor the size of a pea on my pituitary gland. The doctor explained the danger of tumor growing, so surgery was my only option. He also explained that the surgery itself could cause leakage or damage to my brain and eyes. Because of the surgery and recuperation period, there was no possibility of playing ball my senior year.

For the first time, fear prevailed. I was a senior whose classmates voted Most Athletic and Best Mannered, and I had already been offered a college scholarship. Seeing my dream go up in smoke devastated me. Friends and family said, "Playing basketball isn't everything; trust the Lord." How could they possibly understand what I was feeling?

In December of 1991, the surgery was a success, and I was home before Christmas. After my checkup a couple of months later, the doctor informed my family and me that I could resume my normal activities, slowly and carefully. In addition, due to my illness, the Kentucky High School Athletic Association granted me a "Red Shirt" status, which meant I was eligible to play my senior year, the following year. Realizing my dream was once again a reality, I began practicing for the '92-'93 season.

The next two months proved to be devastating because my symptoms returned much worse than they had been before. Returning to my doctor resulted in a week of tests in the hospital, which meant I had to miss my senior classmates graduation, the class with whom I was supposed to graduate. After three weeks of anxious anticipation, my doctor called me at home with unbelievably bad news; Cushing's disease and another surgery to remove the pituitary gland. I couldn't believe what I was hearing. I wanted to throw the phone through the wall.

The doctor performed my second surgery to remove my pituitary gland, July 10, 1992. Two months later the same symptoms continued. A return to my doctor resulted in twenty-eight trips to Lexington, which was a hundred miles away, for radiation treatments. In addition to the effects of the sickness and radiation, my heart literally ached. My "Red Shirt" status wasn't going to benefit me at all. My ability to play ball wasn't physically feasible.

Four months passed by slowly as no signs of improvement surfaced. I could hardly hold up my body. After returning to my doctor, he prescribed eight cancer pills each day, to block steroid production in my adrenal glands. There was no change in my condition, except that the pills caused dreadful headaches, weakness and kept me awake at night. My body was so swollen, and my face was as round as a basketball. It was so hard to do even normal activities. I couldn't get out of the back seat of a car. My skin bruised so easily. A bump into a chair caused my skin to tear off. I knew that in order to live any sort of a normal life, something else had to be done.

Again I went back to the doctor and again he ordered more tests. The doctor told us that I couldn't live much longer in this condition. More surgery was questionable, because my body wouldn't heal as a normal person's. After consultations with doctors form other states, a consensus to do the same surgery or to remove my adrenal glands was reached. They would remove my adrenal glands. The doctors gave me no other alternative.

I didn't know what to do or where to turn, so I made a decision to attend services at Southside Baptist Church. The pastor became a regular visitor. He and a really good friend asked me to come to church again. The following Sunday, I attended church and accepted the Lord as my personal savior. A wonderful feeling ran through my body and I knew then that my third surgery would be successful. The Lord was going to take care of everything. I felt complete relief from this terrible burden.

The doctor performed my third surgery, June 1, 1993, finding three adrenal glands instead of the normal two. After one month, I could really tell a difference. Even though I'll have to take medicine the rest of my life, I have another chance to live a full life. As soon as I was physically capable, I was baptized and I'm now helping the Southside Sisters singing group with their music.

Accepting the Lord as my Savior, has really made a difference in my life. I give Him all the praise and glory for putting my life back together again. I thought basketball was the most important aspect of my life, but the Lord made me realize that He was what I needed. The effect of the disease and medicine still causes extensive bruising and where normal people wouldn't get a scratch, I tear holes in my paper-thin skin. I still tire easily, am unable to work, have difficulty dealing with stress and my weight is still higher than I'd like.

Once I was athletic and rougher than most boys. I now have to be careful just putting on my shoes. Occasionally I shoot basketball and I still have a deadly aim, but I now realize how precious life is - with or without basketball. I would love to hear from others who were young when Cushing's entered their lives.

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Code: 729 Date: Spring, 1997 MALE
I am 15 years old and would love to talk to someone my age. I have spent hours researching and reading about Cushing's after being diagnosed in January of this year. I've talked to a lot of adults but feel it would be more helpful talking to someone my age. I am scheduled for tests at the National Institute of Health this month and will be admitted for two to three weeks. I found you on the Internet and appreciate all the information on Cushing's.

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Code: 418 Date: Spring, 1997.
At age 14 my roller-skating days came to a quick stop. I began to bruise without any reason and experienced joint pain. I was very irritable and depressed but kept to myself and didn't share my feelings with anyone. I was diagnosed with ADHD but it became increasingly more difficult to concentrate and to keep up my grades. My weight gain topped at 125# and my depression bottomed out. I tried to commit suicide because I felt there was no way out. I was finally diagnosed in January of 1996 and had a bilateral adrenalectomy in February. We were not aware of laparoscopic options. I will be on hormone replacements permanently and feel about 90% me again! Please give my name and address to others who would like to call or write, particularly anyone close to my age. I really enjoy reading your newsletter.

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Code: 436 Date: Spring, 1997.
I was diagnosed at the age of 15 by a nurse practitioner who noticed my moon face and hump back. I had lost a lot of hair and wasn't eating hardly anything. I didn't want my Mom to find out I wasn't eating, but I kept gaining weight. For about a year I had trouble sleeping and skipped my period for six months. My first surgery was in August of 1994, my second was four months later. The result of my first surgery was the removal of half of my pituitary……the half without the tumor. My second surgery was performed by Dr. Ed Oldfield at National Institute of Health and was a complete success. I am over two years post-op and doing very well. It was a tough year following surgery with daily headaches. My friends and family were very supportive. I dropped sixty five pounds and look like my 'old' self again!! I would very much like to talk with others my age to be able to help them through this very difficult disease.

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Summer 1996.
I was diagnosed with Cushing's in 1961 at age 14. At that time I had radiation to my pituitary, which was effective for 5 years. In 1965, I had a bilateral adrenalectomy, followed by a transsphenoidal removal of my pituitary gland in 1972. Overall, the results have been very good. I am in good health, although I have some bad days. I have also recently dropped my hydrocortisone dosage, and feel that my replacement dosage has been too high for a long time. I do have osteoporosis. I have collected a large amount of information that I would be willing to share with anyone who is interested. I have been fortunate enough to find doctors who have been willing to study me, and I have the greatest admiration and praise for them. Cushing's has also strengthened my faith a great deal. I would like to do whatever I can to help others.

Pituitary Tumor
Adrenal Tumor
Bilateral Adrenal Hyperplasia
Ectopic
Under 18 at Diagnosis
Male Members
Steroid Medications and Undiagnosed
Cyclic Cushing's
In Memory of...

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