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candlelite2000

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About candlelite2000

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    Board Member
  • Birthday 02/01/1992

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    candlelite2000@aol.com

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  • Location
    Waukesha, Wisconsin
  • Interests
    I Joined this sight because my 14 year old daughter has cushing's because her pituitary gland is enlarged. They will be removing it in 3 weeks (June 13, 2006). I was hoping for other options or encouragment.
  1. I really sympathize with your daughter. I believe I had Cushings even as a child and really understand what she's going through. How is she doing now?

  2. Claudette is feeling tired and it is hard for her to go to far. From the bathroom to living room is long hike. The drainage has stopped. She had big clots come out from both side of her nose. They looked like slugs. She though her brains were coming out. Her friend Ashley who has been thru a lot from a auto immune disease of her blood was here all week to help out and answer question about meds. She was good to have around to keep Claudette company when she was awake. She also knew how to be quiet when she fell asleep. So far Claudette feels the same except for she say she feels like she has a bad sinus infection. I am still waiting to see the changes. Nothing real so far. I still keep on thinking about what the docs are thinking. I wonder what was on their mind when the saw her cortisol level over 3000. Did they wait because Claudette wanted to finish the school year? Would they have done this sooner? Where they playing the waiting game to see what else could happen? She is still shaking. Sometime just her arms, sometime her whole body. She loosing the hair on her head and we noticed the hair on her arms is gone. They used to be hairy naturally. She is not loosing the hair on her face. The doc said that they were going to wait to give her female hormones until thy worked on other things. Does that mean the hair will stay? My mother bugs me to shave her. Should I do that? I know I is not true that it will grow more hair. I do know it looks thicker because all the hair grows in at the same rate. The hair on her face is at least 4 times more than any boy her age. The endo wants to write this up in the medical journal because she is the Cushing?s poster child.
  3. So far claudie is unable to blow her nose. She had the water dumping. blood pressure is lower. sugar level was down when she left the hospital, it was 99. Low blood pressure was 135/87. They went in under the lip but took the bone to plug the hole in the skull from the upper nose area. The fat to fill the space from the pituitary gland was taken from her stomach, they make a big cut, 6 inches! for a little fat. The signs of some sort of visble relief were small. Her skin felt softer, but she still has the big ugly stretch marks. the skin on the bottom of her feet and hands did not seem so leathery, at least to me who holds her hand a lot. the thick waxy skin tha she had all over her body has subsided. Her feet were always cheesy between the toes. It was yucky and smelled. Seems like it is gone in just a few days. Around her eyes she looks a little like her again. she has been unrecognizable for months. I found that the years of pain in her back and feet, the smelly feet and body oder many have been pre-symptoms. Nothing any doctor would say that was more than puberty. add to that a bit of elevated sugar, blood pressure, cholesterol, fatigue, and sudden weight gain she would be like any other american. Her case was pretty bad, however when does a doctor look beyound the symptoms when a person feels down right crapy. The local news paper ran an article on her the other day So far claudie is unable to blow her nose. She had the water dumping. blood pressure is lower. sugar level was down when she left the hospital, it was 99. Low blood pressure was 135/87. They went in under the lip but took the bone to plug the hole in the skull from the upper nose area. The fat to fill the space from the pituitary gland was taken from her stomach, they make a big cut, 6 inches! for a little fat. The signs of some sort of visble relief were small. Her skin felt softer, but she still has the big ugly stretch marks. the skin on the bottom of her feet and hands did not seem so leathery, at least to me who holds her hand a lot. the thick waxy skin tha she had all over her body has subsided. Her feet were always cheesy between the toes. It was yucky and smelled. Seems like it is gone in just a few days. Around her eyes she looks a little like her again. she has been unrecognizable for months. I found that the years of pain in her back and feet, the smelly feet and body oder many have been pre-symptoms. Nothing any doctor would say that was more than puberty. add to that a bit of elevated sugar, blood pressure, cholesterol, fatigue, and sudden weight gain she would be like any other american. Her case was pretty bad, however when does a doctor look beyound the symptoms when a person feels down right crapy. The local news paper ran an article on her the other day. So far claudie is unable to blow her nose. She had the water dumping. blood pressure is lower. sugar level was down when she left the hospital, it was 99. Low blood pressure was 135/87. They went in under the lip but took the bone to plug the hole in the skull from the upper nose area. The fat to fill the space from the pituitary gland was taken from her stomach, they make a big cut, 6 inches! for a little fat. The signs of some sort of visble relief were small. Her skin felt softer, but she still has the big ugly stretch marks. the skin on the bottom of her feet and hands did not seem so leathery, at least to me who holds her hand a lot. the thick waxy skin tha she had all over her body has subsided. Her feet were always cheesy between the toes. It was yucky and smelled. Seems like it is gone in just a few days. Around her eyes she looks a little like her again. she has been unrecognizable for months. I found that the years of pain in her back and feet, the smelly feet and body oder many have been pre-symptoms. Nothing any doctor would say that was more than puberty. add to that a bit of elevated sugar, blood pressure, cholesterol, fatigue, and sudden weight gain she would be like any other american. Her case was pretty bad, however when does a doctor look beyound the symptoms when a person feels down right crapy. The local news paper ran an article on hSo far claudie is unable to blow her nose. She had the water dumping. blood pressure is lower. sugar level was down when she left the hospital, it was 99. Low blood pressure was 135/87. They went in under the lip but took the bone to plug the hole in the skull from the upper nose area. The fat to fill the space from the pituitary gland was taken from her stomach, they make a big cut, 6 inches! for a little fat. The signs of some sort of visble relief were small. Her skin felt softer, but she still has the big ugly stretch marks. the skin on the bottom of her feet and hands did not seem so leathery, at least to me who holds her hand a lot. the thick waxy skin tha she had all over her body has subsided. Her feet were always cheesy between the toes. It was yucky and smelled. Seems like it is gone in just a few days. Around her eyes she looks a little like her again. she has been unrecognizable for months. I found that the years of pain in her back and feet, the smelly feet and body oder many have been pre-symptoms. Nothing any doctor would say that was more than puberty. add to that a bit of elevated sugar, blood pressure, cholesterol, fatigue, and sudden weight gain she would be like any other american. Her case was pretty bad, however when does a doctor look beyound the symptoms when a person feels down right crapy. The local news paper ran an article on her. http://activepaper.olivesoftware.com/Repos...ish-skin-custom
  4. 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 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.
  5. My daughter is having surgery on June 13th. 2006. They will be removing her whole pituitary gland. I am worried about if they are doing the right thing. I feel sad all of the time. Is there anyone else who has a child that this has happen to?
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