Adrenal Insufficiency

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Hi-- been away from this site due to a number of factors-- just getting caught

up... I have a son who is diagnosed with CVID and last year (he is now 12) he

was diagnosed with adrenal insufficiency - he is on cortisol - 10 mg. am and 5

mg. pm... stress dose of 15 mg. three times a day for three days, plus we have

the injection in case of emergency... He too took a lot of oral steroids prior

to being diagnosed with CVID... and has a lot of lung damage... he was tested

with endocrine after I talked to his immunologist about him being weak, dizzy,

lethargic... they did the stimulation test and we really didn't think anything

would come of it.... WELL... def. has this insufficiency... the oral cortisol

really has changed his life.. he has gained weight - seems much better on a

daily basis... although it is scary to think (now that I know) what would happen

if he doesn't receive the medication.  After MRI and other tests... they

attribute this to

" idiopathic " -- meaning -- they don't know why - probably born this way! I

personally have always suspected it is due to the high doses of steroids used to

treat pneumonia and lung infections.... They told me that he doesn't need to be

retested - that it is what it is... and he will always have this... so your

daughter is probably going to be healthier with the medication! I was always

leary of using prednisone...but had no choice because he was so ill...

Phyllis - mom to Liam - 12 years old  

________________________________

From: " Lacey449@... " <Lacey449@...>

Sent: Monday, December 29, 2008 5:08:18 PM

Subject: Cortisol levels

I have a question about cortisol levels too. My daughter has been on

steroids a lot over the last several months. She has chronic lung disease and

often

needs them for her lungs. Last time she weaned off of them, she got into resp

distress within a couple of days, so they put her back on, (she was in ICU),

and told us to wean her down. When she got down to 2.5 mg of Prednisone they

did a cortisol level. It was 6.55, (norm 4.2-38.4). The plan was to check

her level and then decide if they would leave her on long-term steroids or do a

slow wean. Right now we're in a holding pattern because the pulmonologist

wants to consult with the endocrinologist to make a decision. Does anyone have

an idea or opinion about her cortisol level? Since it was in a normal range

does that mean it would be safe to wean the steroids? Or would it be expected

to be normal while on steroids? Thank you for your help~~

Belinda

Mom to Lacey, 20, Cornelia de Lange Syndrome, CVID

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