And It's About Time There Was Some Support For Cushing's!
Stephanie is a 11 1/2 year old who was diag with Cushings Disease on Aug 06.
We were VERY LUCKY.. Steph had been gaining weight even though she was very active in sports, she would gain 8 lbs in a month during the height of baseball season...this had been going on for 4 years..and getting worse. My friend had not seen her for a couple of months and when she did she told me something was not right. I needed to get her to an Endo doc.
Again, luck being on our side, I work in the medical field and went straight to one of the Providers I work with and talked to him about her symptoms. (ie moonface, red cheeks, buffalo hump, fine hair, acne, round belly, stretch marks etc)..he suspected Cushings right off. After doing an exam he did one test...but if came back normal. I waited 2 more months...my gut said the test was wrong..Cushings was the right track.
Doc listened to me and put in a Ref to Ped Endo at Portsmith Naval Hospital. Within a month we were in to see the doc. He explained the disease, how it worked, the sx and the test need to CONFIRM CUSHINGS. He wasn't trying to disprove, he was going to prove it was Cushings!!. That was 17 July 06...By 15 August we were sitting in the neorosurgeons office! Steph had a very large pituitary tummor, it was the shape of a snowman, and was pushing up on the octivular nerve. It had to come out...no other options.
So we were off....Steph would have the surgury 1 Sept at Portsmith Naval....CT scan showed a larger the normal sinus passageway...this was good news..made the chance for and easier surgury. And so it went ...everything went well...but...(there is always a but) Her Cortisol level would not come down...the MRI was redone and it was found that there was a small part of the tumor still there...so 6 days after the first surgury was done, Steph was wheeled into the OR again..first surgury took 8 hrs...this time it was 4...3 days later it was way better news!! Cortisol level was below 1!! The magic number was met!!!! 9 days in PICU and 1 in Peds and she was home!!!
Steph had 1 month of home tutoiring. Docs cleared her to go back to school and lowered her theraputic dose of Hydrocortisol meds...so that is where we are at now...the long road to hopeful recovery..I am so grateful to the Docs at Porstsmouth..but like I said we were lucky...instead of it taking years to figure out what was going on it took a month. Steph was our doc 12th case of Childrens Cushings Disease...he told be the day of surgury that he had taken one look at Steph and the series of picture I had brought with me and new she had Cushings.
Hopefully her luck will stay with her and us!!!
Actually this is about my now 12 y/o daughter.
We were extreamly lucky, Steph was reffered to the Peds Endo at Naval Hospital Medical Center Portsmought last year for unexplained wieght gain, buffalo hump ect. Dr Scouten is the bomb!!
Within 3 months he had her diagnoised, and we had had the sugury to remove a large tummor on her pituitary gland. In facted she had the sugury 2 times Sept 1, 2007 and again Sept 6, 2007.
When her Cortisol levels didn't go down as they expected an repeat MRI revealed a very small portion of the tummor was still there. They wasted no time and took her back in and got ALL of it!
Within 6 weeks she was back at school taking all of her advanced classes, playing basketball and pretty much leading a normal life. She is being monitored very carefully by Dr Scouten and will be for sometime. We so far have had no perm. damage to the pituatary gland and he has just weaned her completely off her hydrocortisone.
How will she reacted under stress, fever, truama? As he put it..we are flying by the seat of our pants with her. But so far so good. She hasn't had a huge wieght lose but her size as come down, if that makes sense, and her little round face has deffinatly gone down. She has also grown 3 inches!! Something she has not done is 2 years! All other sx, acne, stretch marks, oily hair etc are also going away. She also has more energy and bodyaches are gone. Next issue is puberty.......in a waiting game right now and doc is monitoring that closely.
I am just so very thank ful Dr Scouten and the wonderful support staff and Portsmouth Naval Medical!! The 10 days in PICU was alot easier under there wonderful staff. I know with all there help Steph will make a great full recovery!! I also give HUGE credit to my daughter!! She has taken everything that has been going on with such strength that I am in awe of her. Don't get me wrong, she was scared, we all were. But she somehow came up with inner stregth and just kept on going. She knows this isn't an easy fix and may give her problems for the rest of her life. She can even explain the disease to her teachers and peers. She says she'll just deal with it as it comes.
I LOVE YOU STEPH!! YOU ARE AWESOME!!