Cushing's Info

I am joining this message board because I am hoping for some early confirmation.

My son is 3 1/2 and had a sudden 10 pound weight gain between February-May 2011.  He started to have sleep apnea last November, and had several bouts of strep previous to that resulting in 'kissing tonsils'.  He was not sleeping well (due to the apnea) and was very sluggish during the day...we thought it was due to sleep deprivation.

So we had a tonsillectomy and adenoidectomy at the beginning of March, hoping his sleep would improve...so his energy level would improve....so he would be his normal active little self;)  That has not happened.  As I mentioned previously, he has done nothing but gain weight.  His activity level has completely decreased to practically nothing.  We have to MAKE him go on walks everyday, otherwise he would sit for hours on end.

When he is attempting to be active, he seems very weak.  He has a hard time even crawling into the car and into his carseat.

From February-May 2011 he gained 10 lbs. That was the first red flag. Our doctor did a whole battery of blood work and took urine samples.  Everything came back normal, except borderline cholesterol levels.  She had suspected insulin resistance, but fasting blood work was normal as well.

We saw the nutritionist in May, and I learned a LOT about healthy eating.  My husband and I are of a healthy weight and height, and always have been, but we realized after the 10 lb weight gain in our son that we had to make a drastic lifestyle change.  Just because we have awesome metabolism doesn't mean he does, right?

So May was the beginning of our crusade.  Complete lifestyle change.  Counting calories...everything that went in our son's mouth was accounted for.  Obvoiously being summer, we were on the go all the time.  We we hopeful that we could correct this unusual weight gain that we attributed to the sleep apnea and being sedentary in the winter.  That didn't happen how we had hoped.

From June-September (after the big change) he gained ANOTHER 10 lbs.  We went back to our primary doctor hoping for answers, but all we got was a referral to a weight management clinic 2 1/2 hours away.  The 'specialists' were as baffled as we are, and suggested nothing new, except that we as parents needed counseling to deal with his behavior around mealtime.

Oh yes, I forgot to mention this child's appetite.  It is insane.  We still keep him on a strict diet, and are consistent with activity, but we are hated every step of the way.  We just figure it is all part of this whole thing, and can take a tongue lashing...from a 3 year old;)

But as a mother, I just know something isn't right.  The drastic (practically overnight) change is NOT normal.  My family and friends have witnessed his behavior, and they agree with us.  Something is really wrong.

His doctor did genetic testing for Prader-Willi, which turned out normal, but he acts like a Prader-Willi kiddo! He is completely obsessed with food! Starving all the time! So basically after the Prader-Willi testing came back negative, I feel like his doctor threw her hands up.  She sent us on to the Weight Management Specialist.  I was so hopeful that they would be able to pinpont something, anything, that was causing all of this.  Nothing.  They referred us on to the genetic specialist.  So we came back home knowing absolutely nothing more than we knew before.  Complete let down.  I am a healthcare worker, and am a 'problem fixer' by nature, so I decided to take matters into my own hands.  I have awesome resources at my fingertips, and for that I am grateful, and am taking full advantage of.  For my child, ANYTHING.

A couple of weeks ago, we took him back to the pediatrician with all of the same concerns, except they are getting worse.  Appetite is voracious, and his behavior is becoming  violent regarding food and meals.  He has always been such a mild mannered, sweet little boy.  This simply is not him.  I was able to convince his doctor to order an MRI of his brain.  This was before I discovered Cushing's.  My reasoning was this:  if he doesn't have Prader-Willi, he obviously has something affecting his appetite center in his brain (which is theoretically what happens with Prader-Willi kiddos).  The appetite center is the hypothalamus; so if it isn't something genetic, then it must be SOMETHING affecting his hypothalamus, right?

After my research today, I had an 'ah-ha' moment.  He fits nearly every symptom of Cushing's.  The ones that don't apply to him, will surely come later if this goes untreated.  He doesn't have hypertension, but he does have hyperlipidemia (which is puzzling, because neither his father or I have any cholesterol problems, and we all eat the same food), the 'buffalo hump', the moon face with flushed cheeks, the beginnings of stretch marks on his abdomen, generalized weakness, lethargy, headaches, back pain, the main weight gain has been above his waist, severe anxiety, seems to be bruising easier than normal, and we've even noticed a few pimples.  All of this on a 3 YEAR OLD!

So I would appreciate any advice anyone has.  I am bull headed and will not stop until I know what is going on!  Any constructive advice would be greatly appreciated;)

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