And It's About Time There Was Some Support For Cushing's!
My daughter has Cushing's. I though something was going on about 2 years ago when she was 12, yes I said 12! I just knew it was Cushing’s.
The insurance company kept telling me she had her exams and the doc said she was normal, except for elevated cholesterol. So, no appointment unless it was at my expense. She started blooming big time and I checked on the no period thing. They do not worry until 16 years. She was growing the normal hair patterns at that point (however, a medical report I read later mentioned she had moderate hair all over. She always was a bit hairy from the day she was born) and gaining bra sizes by the month, the doc said don't worry. Then the weight gain began and the ugly stretch marks. My beautiful daughter who was a pageant winner, model and actress was blowing up. But hey, mom is fat so the kid will be too. My doc gave this big explanation about if a whole family were triathlon participants they would all be healthy and if another were a family of unhealthy eaters they would be sickly and over weight. (Referring to my weight and numerous unexplained aches and pains that are a living hell) The doc said eat less and exercise. (I had been told this my whole life and it NEVER worked, I even had a stomach stapling, I am the diet expert queen, and I am still fat! More than 150lbs over weight)
She dieted a very balance diet, no fad diets, and exercised daily, 6 months later she weighed 25 pounds more than when she started. They said she was lazy and she should try harder (I heard that too). So far, she has gained over 100lbs and climbing. Why wouldn’t a doctor question a child of normal weigh her whole life and suddenly she becomes a blimp? I guess it was all my fault in their eyes.
The stretch marks look like a map of rivers carved into canyons, they go from her wrists to her ankles, and the worst are on her stomach and under her arms and breasts. Some are more than two inches wide bright red and purple and sunk in. She can brush the hair on her face, back and chest. She is covered with hair from head to foot. It is hard to tell the beginning of her hairline. Speaking of her face it is so puffed up that her eyes are just a slit, her cheeks are puffed out further than her nose, and head is misshaped because of rolls of fat on her scalp. She speaks from two fat lips and her teeth are spreading apart. The roll on her neck goes from her chest to her chin with no break. She is 14 years old! and looks like she is 50.
She was dragging her self to school for the last 2 years, but kept A+'s coming in. She was in pain all the time. This was not the same kid! I am Mom and I know my kid! I was the one who had to keep buying her larger clothes. She and I agonized over the fact that she was getting fat and she felt she needed to be chastised, that she had no right to feel pain because she was too young. The only thing she could do was keep pushing on like all the other fat people, shop in the ugly large clothes section, and live with it. . Finally the doctor took a blood test, (not our family doctor, I had to pick this one out of the phone book), and guess what? They told me that her cortisol level was over 3000, I guess that is pretty bad. We went from no one listening too they were afraid to touch her.
It was getting so bad those two weeks after the first blood test she started missing school from exhaustion. She never missed a day of school before this. (She couldn't she was only fat then). After several weeks the school volunteered to home school because she was looking so horrible, they were afraid the other kids would knock her down an injure her. She could not see where she was going because of blurry vision and her cheeks were too big. I have to bath her and help her stand up and walk because she is like a big ball.
The teacher comes by two times a week. She stays home alone by because I got to work, all the better for her because she sleeps at least 16 hours a day. Anyhow several months later, after MRIs, numerous blood tests she is on high blood pressure meds, diuretics, glaucoma eye drops (Hello, she is 14!) we have a prognosis. At first, we felt bad that she would have to have part of the pituitary gland removed to reduce the cortisol level. It would have been a small tumor the size of a pinhead I am told. After which she would have had to take medications for a while to control the body functions, sweating, eating habits, heart rate, hormones etc… until the pituitary took over again. That would have been great compared to what really is about to happen. It turns out that her whole gland is enlarging and is five times the size of normal. The whole thing has to be removed. It is too big for the space and pushing on her optical nerves, threatening her sight among other things. (Hey, only 1% of time these things are cancerous. That’s the good news until they go in). When I heard what life would be like after, descriptions of mentally unstable, infertile, and medication the rest of her life to keep her alive, the list goes on, I was devastated. The latter option of removing part of the pituitary was a cakewalk.
June 13th (2006) is the day they will be taking my baby from me. We are to arrive at the hospital at 6:00 am for surgery. I still do not know if I am doing the right thing.
Is there anyone out there who can help us? This is a rare disease for children;
our worldwide know children’s hospital couldn’t even help.
One last thing, the doctors keep asking who diagnosed her. I tell them I did.
Actually, they are not too surprised. Once you get with the doctors that handle
this type of thing, and that is not your family doctor, they know what a
struggle it is to get someone to listen. Don’t feel crazy if you feel that you
may have this disease. I have read everything I could find. I have delve into
and looked at every angle on this as possible. I did not read the first sight
that came along. I researched the adrenal system, the types of surgery, the
options, the symptoms, read other peoples postings, and any thing that at least
one mention of anything to do with the subject. I did not just look for
Cushing’s but any words that had to do with the adrenal system. What I have
found out is that too many of us are walking time bombs. People have died before
anyone believed them. One sight that has a group of doctors handling the info
mentioned that they believe that one out five diabetic patients could be
suffering from this disease. What about the ones that have osteoporosis? High
blood pressure? Unexplained weight gain? Or just feel like crap? Another sight
mentions that at least one fourth of the population has a small tumor on the
pituitary that could be cause any number of health problems for no reason like
fatigue syndrome and fibromyalgia.
Here we are a week after the surgery date of June 13, 2006, hoping for recovery soon. My 14-year-old daughter Claudette has had most of her pituitary removed. They left only behind a rice size piece at the stalk. At first we were told the whole thing would have to come out because on the MRI it was 5 times the size and pushing on her optical nerves. A tumor was not seen on it. When they went in with the camera they found that the gland was yellow and spongy, not red like a healthy gland. The surgeon took slices for the pathologist until they found a red part near the stalk. They did not biopsy the red part just in case they might damage it. They scraped the cells off the membrane around the pituitary, but they are unsure if the cells traveled down the stalk to the brain. The docs say I should be thankful that they were able to leave a piece behind. That will be good thing if it works. If it does not work it will mean radiation treatments to kill the rest of it.
Claudette was not over weight or lazy. She was always one of the fastest runners in the class and could run with out getting out of breath. She was considering going out for track and the swim team in high school. Claudette was active in Girl Scouts and other after school activities. She and her friends would compete with each other doing Dance Revolution on Play Station. During that time she complained about her back and feet. We saw the chiropractor and arches were prescribed for her feet. She was still slim and starting to develop fast physically. Her clothing size went up and need larger and large bras. I asked the doc why she did not have her period. She had body hair and body odor. I was told not to worry until she was 16. Her sugar was up and so was her cholesterol. Until this time her health was good. I never missed a day of work to stay home with her from school because of illness. Even if she had a cold or sinus infection she would make it to school. She loved school and has always done well. In fact she refused to have the surgery until she finished this year, which she did with a 4.0 even though she was not in school since March. She did all the work at home on the dinning room table. The only times she had any real illness was in the beginning of 1st grade she had a high fever and nothing else except sleeping. The fever was as high as 104 and was completely unexplained. Those last almost a week. She always had sudden nosebleeds, but she would always handle them on her own and did not go to the school nurse to go home.
In 5th grade she took drums, which meant standing during class and concerts. At first she was ok. In 6th grade she started to complain about having to stand all the time. She said her legs would get shaky; it was had to play like that so in 7th grade she took chorus and almost fell off the stand because it was hard to stand for a long time. It was hard for her to go with her friends to the mall (Oh no!) because she could not walk as fast as them. She got weak and would have to find a place to sit. Her face was sort of distorted and pudgy under the chin. She was also falling for no reason and the pain in her back was unbearable at times.
This past October we went on a make a wish trip to Disney with her good friend who has a blood disease. Several years ago her friend was stricken suddenly with spasms like St Vitas dance. After they got it under control the girls were having a sleep over and Claudette’s friend was about to have a stroke. Claudette called her friends mother just in time. After much treatment she has been on high doses of prednisone since. Her friend has steroid induced Cushing’s symptoms from it. While looking at the pictures of the girls in matching Tinkerbelle outfits, hats, and sunglasses we kept noticing that the girls looked like twins. We had not had any clue at the time what that would mean. Funny thing is her friend has commented it was as if Claudette was making the cortisol she needed. If you knew Claudette you would believe that was true.
I could not get a doctors appointment for a long time. The insurance company would call every time I scheduled and appointment to say she already had her 13-year exam. At that exam the doctor told her to loose weight and she would get her period soon because she had all the hair in the right places and she was developed. My dad went into his doctor and described how Claudette was currently looking and the first thing he said is it sounds like Cushing’s. I could not see him but I could see his partner because of the insurance. By the way these doctors were osteopaths, DOs not MDs. When the doc entered the room he took one look and her and had the sorriest look on his face. The next day she took her first fasting blood test. They called back right away and said she needed a 24-hour urine because the cortisol was so high in her blood. What the doc saw that day was a14 year old girl with big red stretch marks all over her body arms and legs. She had a fuzzy light beard and moustache on her face and it was hard to tell where her hairline began. She had hair done her back and chest. The hair on her arms had fallen out and the hair on head was thinning. She was on the other end of a strict diet and exercise program she had put herself on for 6 weeks, which she gained 25 pounds during that time.
We went to the children’s hospital in Milwaukee. Everyone was as helpful as they could be, but unable to handle the situation. We saw Dr. Findling at St Luke’s and he had her take a Petrosal Sinus Sample, which they said that the hormones it was emitting was of the charts on both sides of the pituitary. She also has to chew a piece of cotton between 11 and 12 at night. He really did not do much, but was sure we were going to find a tumor during the sample. After waiting and few different stops, and Claudette growing weaker and heavier by the day we finally saw Dr. Meyer at Froedtert, he is a neurosurgeon. He said that the whole gland had to come out because it had grown 5 times the size it was suppose to be. He added that she would never be able to have children. Surgery was scheduled for when school was over. We saw some more doctors, Oncology, Optimology, and presurgical. She went on glaucoma eye drops, high blood pressure, diuretic, and Vicodine for pain. So I guess it was not growing pains, laziness, and over eating was it?
I knew about Cushing’s before she was even born. I asked my doctors to test me. To this day my doctors will not test me. You can be sure that as soon as I am done taking care of my daughter I will be find a doctor that will test me. I am 45 years old and would describe my health as a living hell. It is too weird that my daughter had it for real. The doctor said she was textbook. She had it all. In a little over a years time she double her weight. When she entered the hospital she was 220. I know that is not a lot for most of us facing this problem but her 5-foot tall body was deteriorating in from of me.
Right now we are dealing with the bloody drainage from her nose. She is unable able to blow her nose and she cannot pull at the clots coming down. We fashioned a sling to hold gauze from a hospital mask. The Prednisone makes her sick and she is just tired.
Nighttime is bad because it she unable to breath thru her nose at all. I suspect that that here are other things happening. Now this is just my theory but Melatonin is needed by the body to sleep, we make Melatonin when the sun goes down. People who work 2nd and 3rd shift have higher stress levels because of this. When Claudette was restless and could not sleep I used to give her Melatonin and she would settle down and sleep. She said it was not a drowsy sleep it just worked. She heard of a research test that said that Melatonin did not work and she expressed that it had to be wrong; maybe it was in her case. If her cortisol level was high day and night was she producing enough Melatonin? The doctors do not test for Melatonin as far as I know. The brain does need it to go to sleep. Now Claudette’s body only has steroids from the prednisone. No wonder it contributes to insomnia. On this note I also want to try some adrenal supporting vitamins. If anyone knows about any of this let me know. I guess that is it for now, since I have gone on and on. However, anyone who knows Cushing’s knows it goes on and on.
I will update when the docs let me know.
Claudette's story in the media.
