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Cushing's or not?
My daughter 6 years old now, started changing 3 years ago, she is tall, overweigth, pubic hair, undrearm hair, buffalo hump, hypermigtacion, red face, moon face, and I do not what to do????
Best Answer
did your daughter get diagnosed?what happened?how is she, if I hear back from you I will explain why I am asking, I have Cushings disease but practically diagnosed myself
hope to hear from you soon
hope to hear from you soon
Thanks! Do you think that the diet is good for Isabella it will be difficult to her to eat!
If you look through the medhelp archives, you'll see that many people have to go to many doctors before finding the answer to their problems. I was so hoping that you were going to find an answer with that doctor. She needs a hormonal workup, insulin levels checked, etc.
True story: A neighbor asked me to use my computer to look up celiac disease for her.
So I learned all about it. In the meantime, my sister tells me that one of my brothers (we have 9 kids in our family) looks gray, with a distended abdomen, and was getting bloodwork to go to surgery to have some of his colon removed - he was pouring blood out of his rectum. She asked me to call him. He described his symptoms to me and I suggested to him that maybe he has celiac disease! So he says, what do I do about that? I tell him to follow a gluten free diet and that should cure the problem if it is the problem to begin with. So he follows the diet and voila! He's cured!!!!!! After years of suffering, he was completely better within a few weeks. He cancelled the surgery within the first week of the diet, because he could tell that it was helping. It is now 12 years later, and he feels awesome. The diet also cured his asthma along with many other problems. He told me he prayed to God and that God always answers his prayers either by phone or mail. I thought it was amazing that right before his surgery, someone asks me to learn about celiac disease and it turns out to be the answer to his prayer. I hope this gives you some hope. God knows was she's going through. He'll help someway, somehow. Hang in there!
True story: A neighbor asked me to use my computer to look up celiac disease for her.
So I learned all about it. In the meantime, my sister tells me that one of my brothers (we have 9 kids in our family) looks gray, with a distended abdomen, and was getting bloodwork to go to surgery to have some of his colon removed - he was pouring blood out of his rectum. She asked me to call him. He described his symptoms to me and I suggested to him that maybe he has celiac disease! So he says, what do I do about that? I tell him to follow a gluten free diet and that should cure the problem if it is the problem to begin with. So he follows the diet and voila! He's cured!!!!!! After years of suffering, he was completely better within a few weeks. He cancelled the surgery within the first week of the diet, because he could tell that it was helping. It is now 12 years later, and he feels awesome. The diet also cured his asthma along with many other problems. He told me he prayed to God and that God always answers his prayers either by phone or mail. I thought it was amazing that right before his surgery, someone asks me to learn about celiac disease and it turns out to be the answer to his prayer. I hope this gives you some hope. God knows was she's going through. He'll help someway, somehow. Hang in there!
Hello!
We went to our appt and the Dr. NO CUSHING"S and i can't do anything else. No more investigation even that she still had al symptoms. But Iam doing a lot of investigation and I find another door in NIH, but it will take some months too see Isabella, something good is going to happen she does not deserve to suffer.
We went to our appt and the Dr. NO CUSHING"S and i can't do anything else. No more investigation even that she still had al symptoms. But Iam doing a lot of investigation and I find another door in NIH, but it will take some months too see Isabella, something good is going to happen she does not deserve to suffer.
Wait to try the diet after your phone appt. with the doctor. Leave a note telling me what they think or what plan they come up with. I'm glad to hear you have another doctor to talk with. Before your phone appt. make sure you make a detailed list of every symptom she has and had in the past, from head to toe - and all the blood tests she's ever had and scans. Write down her height and weight and the age all these changes started. If you can, get copies of her bloodwork. Lots of information is a good thing! Good luck!
You DID NOT FAIL your child! You're doing everything you can to help her. This is not easy stuff. Even doctors scratch their heads and don't know what to do many times. None of us are God! If God meant for this life to be easy, none of us would be suffering - and there's an awful lot of suffering out there! All we can do is our best - and that is all we can do!!!!!!
Where on the autistic spectrum is your daughter? Are we talking Aspergers (high functioning autism) or is she somewhere else on the spectrum?
Where on the autistic spectrum is your daughter? Are we talking Aspergers (high functioning autism) or is she somewhere else on the spectrum?
I already read the articule that you sent to me and it is very intersting but the think that isabella do not had the: The classic triad of features in McCune-Albright syndrome, polyostotic fibrous dysplasia, autonomous endocrine function, and café au lait skin pigmentation, Isabellas's pigmentacion is something called acanthois nigricas. http://www.answers.com/topic/acanthosis-nigricans, but anyway the doctor do not explore any other reason that breaks my heart my hopes in that doctor. Just said not cushing's by! HE is a doctor !!!!!! I am so angry I really feel that I fail to Isabella.
Please tell me more about the gluten free diet, besides all the clnical problems my princess has a diagnosis of Autism Spectrum Disorder, she an anxious child and very sensitive, they do nothing about adrenal becuase her doctor said so, I just contact a Endocrinology doctor in Mexico she is a peadrict one she is asking for all infomation that I have fron Isabella I already sent to her. I will have a phone appt. nexy week, It is necesary to go there I will move mountans to get money to go to mexico for help for my daugther. Could you imagine a 6 years old girl with all this problems in her shoulders I jsut feel that I fail to her as a mother becuase que nedd to proctec them and I fail to her. Thanks for talking with me that helps me a lot. God bless you.
This is what I found today. In young children, Cushing's syndrome usually has an adrenal cause, including McCune-Albright syndrome. Check out this site and see if it rings a bell.
http://emedicine.medscape.com/article/923026-overview - 87k
http://emedicine.medscape.com/article/923026-overview - 87k
Did you post your question on the PEDIATRIC ENDOCRINOLOGY site - the one the doctor's respond to? I haven't seen any recent posts on that site, but maybe give it a try and see if the doctor answers. If your daughter was the endocrinologist's child, you bet he'd be running every blood test and scan to find out what is wrong! Did they test her estrogen and testosterone levels and adrenal bloodwork, etc.? How could a child have so many symptoms and yet the doctor seems quick to dismiss them? Keep praying and looking for doctors and bugging the doctors that you have now. Other than that, give the gluten free diet a try. I read on a website that gluten is one of the foods that raises cortisol levels - it's an inflammatory food and cortisol's job is to get rid of inflammation. I know my daughter slimmed down quickly after she started that diet.
If you'd like to try the diet, send me a message and I'll tell you what she can eat.
I'll keep studying your problem and post anything I find. Keep in touch!
If you'd like to try the diet, send me a message and I'll tell you what she can eat.
I'll keep studying your problem and post anything I find. Keep in touch!
I jus came back for the doctors office an Peadritric Endocrinoly one. He said it is not cushing's Why? he said that the first time her cortisol levels were high because she was so worried and stressed, so he do again a cortisol test while Isabella was in the hospoital for a week, she was calm and he said all the test came low, but it could be ciclycal rigth???? they did teh brain MRI but not the adrenal one. He just said I am endocrinolgyst and can not do anymore. I am devasted not because he said not to cushing's but his lack of investigation, she is a 6 years old girl traped in a big body she is tall, her weigth is like 52 kilos, strias , buffalo hump, moon fface, no neck visible, hyperpigmentation, oil skin and hair bad odor in her axilla, poor sleep, breast development i just want to her to be happy. What I can do????
Yes I am working on that, I just so difficult to find help here in Canada. I found 2 doctors and they denied the help because she is a girl not an adult. Thanks for you support!
Then you need another endocrinologist! His "no answer" is unacceptable!!!!!!!! More hormone testing is definitely needed!!!!!!!!!!!!!
Thank you very much! It will surprise you. We are with an endocrinoligs actually peadiatric one and it is one year ago that we began with him and there is noit answer fron him, he thinks that t was something in the pituitary gland but because the MRI did show nothing he is does not cae anymore. She is just 6 years old with hair en here face and her tummy is just a potbelly, she is tall more than normal with a signs of puberty i just need some ]body to care for her.
Your daughter needs to see an endocrinologist right away. An endocrinologist is a hormone doctor. The buffalo hump is usually associated with Cushings as are the other symptoms. Make sure you let the doctor's office know her age and her symptoms and push to have her seen right away. Good luck...hope this helps!
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The foods that can cause the most problems seem to be gluten (in wheat, barley, rye and oats) and cow's milk (all products) and sugar. They alter hormones. A gluten intolerance or celiac disease can cause many nutrients to be deficient! And if you have a gluten problem you almost definitely have a cow's milk problem (they seem to go hand in hand). They both have been associated with certain autoimmune diseases (and since they didn't see anything on the MRI, maybe you are dealing with autoimmune - though it could be something else). Did they check her adrenals with an MRI?
Did they actually test her cortisol levels and did they come back high? There are natural ways to help lower cortisol - like vitamin c and zinc and a few other things (I just don't remember at this time). I hope to find time to look it up for you and send you the link that I found accidentally one day when trying to help my own kids. I remember a gluten free diet was required along with several other things. At least the facial hair can be removed with electrolysis. I feel for you. Hang in there! I'm saying a prayer right now for her. I hate to see kids suffer! Leave me a message if you have any questions.