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Alice’s Daughter, Undiagnosed Bio

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undiagnosed2

 

Reading the bios and other information online about Cushings has me very concerned for my 15 year old daughter.

At 5 she developed strong body odor and started rapidly gaining weight. She also grew extremely fast. She was the biggest kid in her kindergarten. We have a very tall family so I did not think the height was abnormal but I did ask the doctor about her body odor and told the doctor I was concerned she was starting puberty at 5. The doctor told me everything was fine. I noticed my daughter had tons of pubic hair at age 7 and I took her to the doctor. The doctor did think this abnormal, she was also already developing breasts.

They did a lot of tests and told me her bone age was 3 years advanced. I cannot remember what they said her diagnosis was but basically early puberty that they said would stunt her growth. She is presently 15 and 5′ 9″.

My daughter’s weight remained too high but relatively steady until about two years ago. She has gained 75lbs in the last two years, her hair is falling out, she is having to shave her face because the sides of her face are completely covered in hair, she constantly complains of aching joints and now in the last 9 months she has developed a huge fatty lump on her back just below her neck.

I have mentioned some of these symptoms to the doctor in the past but the doctor blames the symptoms on my daughter’s weight. Her hair loss the doctor blames on stress. My daughter is not stressed. She has a very laid back personality. I am taking my daughter back to the doctor on Monday and am going to insist she check my daughter’s cortisol levels.

Does anyone know of a good doctor in Colorado? What tests should I request from her doctor? Does this sound like Cushings to anyone else? Thanks for any help.

Alice

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Melissa (Melissa), Suspected Pituitary Bio

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The pituitary gland

The pituitary gland

At only 19, I have been through a lot medically. I went through puberty at the young age of 8 and by age 15 was diagnosed with osteoporosis after breaking 20 bones within a year’s time. I had always had hormone problems and was put on birth control pills in hope to help.

This January I stopped the pill and within a few days started to feel crazy. After an allergic reaction to nuts I went to the hospital and was put on prednisone. Within a few days I was miserable and ended up on suicide watch. I knew my hormones were wacky and I had panic attacks, depression and anxiety all of which I never had before.

Over the next two months I gained 40+ Lbs all in my stomach and got “moon face” with a slight buffalo hump. I was exhausted all the time. I bruised easily and was afraid to talk to doctors for fear they would put me in a mental ward for my anxiety and depression. I could barely sleep through the night becuase of nightmares. I had no libido and started growing a lot of facial and body hair…

When I came home from freshman year, I finally went to the doctors. Urologists, cardiologists, endocrinologist, gynogylogists you name it. Most wrote me off. The endocrinologist diagnosed me with PCOS and hypothyroidism after blood work and becuase of my symptoms. However I kept having headaches and would be freezing and rapid rate heart even when laying down. I finally perseuded the doctor to do a brain MRI. I got the results last week and there is a suspected 3mm pituitary microadenoma. Of course my endocrinologist left for a month vacation and I go back to school next week.

Right now I’m in the process of figuring out where to go and what to do but I feel like this would be the closest thing to what I have… Hopefully answers will come soon

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Denise (Jeff’s Mom), Undiagnosed Bio

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My son is almost 16 years old and so sick he hardly gets out of bed anymore.  Although no Dr.s believes me I do believe he has Cushings and the Dr.s can not give me any other idea’s of what is wrong with him only that he needs to lose weight and exercise more.  My son is so tired of hearing this that at his last appointment with a specialist at Childrens Hospital of Philadelphia he left in tears and wants to know why no one is helping him.  He is to the point where he doesn’t even want to go to the Dr.s anymore, he thinks it’s pointless.  He has only had one 24hr Urine test which came back normal and an cortisol & ACTH test taken at 5pm and these were also within range.  I am going to guess maybe things started at the age of 9 or 10 and progressively gotten worse.

His symptoms are as follows and the explained away answers from the Dr.s –

1. Headaches all day everyday – sometimes severe, sometimes just there and no amount of advil seems to take it away completely – Dr.s probably puberty and since he is a big kid take up to 4-advil every 4 hours.
2. Buffalo Hump – we brought him to the Dr. about 2-3yrs ago for this odd hump on the back of his neck – Dr.s it’s just a fat deposit – he just deposits fat in odd places
3. Red to purple stretch marks that fade and get brighter but never go away completely – they appear in masses on his sides, back, shoulders and stomach – Dr.s response although his stretch marks are quite impressive they are typical of what you would see in cushings they are not purple enough or wide enough.
4. Severe pain in back and knee (sometimes elbows) – he can’t even take a simple trip to the stores as it is to much for him to walk around – his is 15yrs old and is now asking me to get him a cane to help him get around.  Dr.s response to the pain – must be growing pains (my son is 6’1″ and I was just told he is pretty much done growing)
5. He does not sleep at night, says can’t fall to sleep no matter how hard he tries and when he finally does fall asleep in the morning early hours he will sleep most of the day, then wake up still feeling tired.  He told me it’s like his mind sleeps but his body doesn’t feel rested at all.  Dr.s said he needs to stop video games and t.v. to hours before bed – these types of things stimulate the mind thats why he can’t sleep.
When the Dr.s were told the rest, they really didn’t say anything at all – below are the rest of his symptoms:
6.  He is starving at night – he says he has to eat he is so hungry
7. Having a hard time remembering things and getting progressively worse
8. Losing his grip – he can barely right his name – when I ask him to squeeze my hand it hardly even hurts me now and he says when he tries to squeeze hard he gets this odd sensation up his arm and it feels really off .
9. Has a hard time sitting for an extended amount of time – this has caused him to miss the last 6 weeks of school – his says the pain in his back and sides are just to much to handle when trying to sit.
10. He has had numerous skin aliments, mouth sores
11. Always thirsty
12. Acanthosis Nigricans – back of neck, under arms, elbows
13. never a sick child until recently – strep throat, mono (which I was first told he didn’t have), normal colds now last for weeks with him where he never even got colds before.
14. slow healing of cuts and he scars horribly

I am sure there are other things but these are the first to come to the top of my head.  His biggest complaint is the memory loss, lack of sleep and pain.  I am scared for my son and do not understand how this is acceptable for anyone let alone a 15yr old.  I am watching him get worse and watching his precious teenage years just pass right by him.

Contact Denise here.

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