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    Old 05-27-2006, 01:52 AM   #1
    candlelite2000's Avatar
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    candlelite2000 HB User
    Unhappy Cushing's Disease/Syndrome

    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](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)[/I]
    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 [B](Hello, she is 14!) [/B] 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 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.
    [SIZE=2]Is there anyone out there who can help us?[/SIZE] 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. [B]People have died before anyone believed them.[/B] 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.

    Last edited by candlelite2000; 05-27-2006 at 12:24 PM. Reason: misspelling

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    Old 05-27-2006, 09:21 AM   #2
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    ElfieNLynx's Avatar
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    Re: Cushing's Disease/Syndrome

    Bless you and your daughter. It must be immensely hard being her age to have to live with such a disease, but she must be very brave and have a strong willpower. It is ashame that doctors don't know how to look past the obvious reasons and see something more, though it isn't a common disease it isn't so rare that no doctor wouldn't have a clue; if they just listened to you sooner I'm sure much could of been provented.
    Anyway, have you thought about seeking a therapist for your daughter? I'm sure she is probably very depressed over this and at her age it must be very hard to deal with. It might help her to gain some inner peace with her condition. We thought my niece was showing signs of the disease awhile back and I helped my SIL with some research. It might make your daughter feel better to know she isn't the only one.

    I hope everything goes well for her in the future and kudos to you for not giving up on your gut feeling, that is true mother's wisdom that you have and don't ever let anyone push you instincts aside. Bless both of you!!!

    Last edited by moderator2; 05-27-2006 at 09:37 AM. Reason: Please honor your membership agreement. Please read and follow the posting rules.

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