And It's About Time There Was Some Support For Cushing's!
Hi everyone, posting on behalf of my daughter who's 8. After her first 3 years of very poor growth, she's suffered cushings symptons for the last 5.
After many trips to various doctors, we got a fantastic endocrinologist, who actually listened & finally have a diagnosis and were off at the weekend, to a specialist pituitary unit, hopefully for some light at the end of the tunnel.
To all you mums out there, it can happen to children !! You just need to get to the right doctor. Good luck to all & never give up !
Update April 24, 2006
Hi , This is my daughters story, so far...Corrine is now 8 & tries very hard to be a normal kid, but life is getting very difficult. She weighs 60 k She was a 'failure to thrive' baby, who struggled to gain weight, age 1 was 18lbs, age 2,19.5 lbs age 3 she weighed 21 lbs.
At 3 1/2 she started gaining weight rapidly( approx 2 lbs a week) & grew breasts, she was very sweaty & red in heat patches all over her body. Worried we saw the first of many endo's, dont worry her body's playing catch up we were told. The weight continued..We kept getting dismissed.
Ufc & serum cortisol were occasionly high...We worked with the hospital dietician for a year, & still follow rigidly the 1000k /day & strenuous exercise regime... did nothing, she suggested another opinion..2nd endo had the first as his boss, despite high's on testing that was going nowhere.
Finally we moved areas, 650 miles north, Cooler climate, new hospital! The new endo suspected adrenal adenoma, clear on genetic & metabolic tests, Corrine sweats profusely, is always bright red, & was getting headaches & periods of confusion, as well as being very tired all the time, & the weight was still piling on.
Age 5 was 45lbs. again occasional high ufc & serum cortisol's. Further testing showed precociuos puberty (no surprise there !!), high serum sodium, increased acth, normal crh,insulin resistance, occasional high thyroid, consistant midnight serum cortisol's inexcess of 150...adrenal scans showed nothing. She suppressed on the dex test. (6% of cushings patients do ..) Had a slow down period between 6 & 7, then it all kicked off again.More testing, sometimes high...Finally got an mri,
Pituitary cushings diagnosed in Sept 2005, following mri with posterior pituitary bumpy all over.
Went to specialist pituitary unit spring 2006, expecting treatment ....ufc's normal, still high midnights, 2 day Dex test, initially didn't suppress but then did, so cushings dignosis withdrawn ??? But they did think the pituitary was being stimulated from another source....??? so they sent us home...
Our local endo ( god bless her ) is continuing testing...Acth, cortisol's, & we are currently pursuing the serum sodium, as this is constantly high ( 150-155), & hoping that the source will confirm the location of all the other pituitary hypers.
Corrine's considered to be normal height, but she is short, compared to her sisters who are are average weight for age. We have a confirmed problem on the hypothalamic, pituitary adrenal axis, but no one seems to know exactly what it is .. So I'll keep on going back & keep on testing & one day we'll have an answer, hopefully it wont take too long...
Jo, Corrines mum.