Cushing's Info

Here is my story.............

It all started about a couple of years ago when my son was in kindergarden. I had noticed that as my son was making his way though his first year of school he started to gain weight. He has always been an active child, playing 2 seasons of soccer a year and pretty tall for his age and an average weight weighing about 50 lbs when he started 4 months later in January of 09 an extra 7 lbs were added on and Nov 09 an additional 16 bringing him to 71lbs at the age of 6. 7 months later he had gained another 10 lbs. I kept asking the dr's why and all I was told was that he needed to diet and exercise more. now at 3'10" only an inch taller then he was almost 2 years prior.

We had him checked for diabetes and hypothyroidism and all tests came back normal. So last year we signed him up for tackle football so he would get the strenuous exercise that he needed while dieting. With practices being 5 days a week 3 hours a day and 2 hour games on saturdays he still managed to continuously gain weight. In feb of this year now 7 years old still at 3'10" and now weighting a whopping 98lbs I took him back to his pediatrician choosing a new Dr with in the office now and laid it into him. Telling then that now matter how little we feed this poor kid, no matter how much exercise he does he still gains weight and quite quickly. His face is always beat red and it has nothing to do with the sun, his face is also so round that it looks swollen.

He is 7 years old and has acne, what 7 year old do you know gets acne as bad ass him. The Dr finally looked at me and said "you know what.... I think we should send him to a hormone specialist"

And so our journey begain. Very next week we met with the endocrinologist. He had him undress down to his skinnies and just by looking at his physical features he said, "I think I may know what he has, I have only seem one other case in an 8 year old child 20 years ago, but to be sure we must run some test first to confirm it" so off he sent us down to radiology to get an x-ray of his had and then over to the lab where they took 12 viles of blood from his little arm and sent us home to do a 24hr urine collection. With in the week we had the results back, he has cushing's. They sent us in for 3 different MRI's due to his high ATCH levels and they all showed nothing. From there we got referred to a neurosurgeon and neuroradiologist up in Las Angeles.

We went and had a BIPSS done wich pointed them in the direction of the right side of the pituitary gland. On may 2, 2011 now weighing over 106 and still his little 3'10" we went in for his Transphenoidal pituitary surgery and everything seemed to go well. The surgeon said that while the were in there they did find an abnormal spot that looked like a liquidy substance that resembled an adenoma. Pathology results came back confirming that it was indeed an adenoma. They checked his levels during the week stay in the hospital and they said that everything looked hopeful. His cortisol levels on day of surgery were above 39, day after they were at 4.5 and then again dropped to about 3.4

We've gone to our follow ups with everything healing nicely and looking good except for a bit of a sinus infection. So 11 days post-op we get his levels checked again, meet with the endocrinologist just a few days later to discuss how everything is going, excited that we'll be heading towards a cure just to have our bubble busted when he said, his cortisol levels are back up over 28 and he doesnt think that the surgery was at all successful :yikes: .

So here we are again back at square 1 doing another 24 hr collection and at the next options he is giving us, removal of the pituitary gland, radiation, or removal of the adrenal glands. I am at my wits end. I dont know what to do now, why such the drastic steps, cant they just try n take the half of the pituitary gland the they know to be affected? How do I make such a big decision for another person that will surely affect him the rest of his life. How do I know what the right choice is for my 7 year old little boy.

I am looking for help, for pointers from people who are in the been there, done that situation....... :please: , I appreciate anyones and everyones advice and opinions to help lead me in the right direction.......Sorry for the long version................

Sincerely,
LeAnna  (mommy of cushie 7 y/o Levi)

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