juvenile addison's disease

[luluB]

My  12 YO nephew was diagnosed with Addison's disease about a year ago. He has been on cortisol and florinef (I think) but still has mood swings, is often having trouble focusing and is depressed frequently.
Are cortisol day curves useful? Are they valid?
(His pediatric endocrineologist feels he is doing well, but also has little experience with Addison's in children.)
Is there any way to find a Dr. who's area of interest is juvenile Addison's Disease?  He lives in Florida, but his Mom would travel to find a doctor who had more than one child patient with the disease.
Thanks for your help.
Lucy

[Deanna L Aftab Guy, MD]

you must be in a different country, in the US we do use somatropin but the brand names are different, most come in premixed versions now and don't have to mix but others you still mix. If you need growth hormone and cortisol you may indeed have panhypopituitarism, meaning that you are growth hormone deficient and acth deficient which is the pituitary hormone that helps the adrenal gland work to make cortisol.
thanks for the information, keep up with your treatment

[dalo]

the growth hormone that i am on is zomacton.zomacton 4mg powder and solvent for solution for injection somatropin . each carton contains 1 vial of powder for injection contains somatropin 4mg 1 ampoule of solvent contains. sodium chloride solution and benzyl alcohol in water for injections.THE lost comment in which i spelt zomacton is wrong. i am still not fully sure about addisons disease so i would normally tend to get some things wrong maybe this might help you to answer my question THANK YOU

[Deanna L Aftab Guy, MD]

Brendan, Thanks for your personal experience with having Addison's disease.
Please explain the injection you are on, this is not a brand of growth hormone that I am familiar with. Is it spelled right?

[dalo]

my name is brendan i was diagnosed with addisons disease when i was 11. i am now 15 and am after improving greatly to the medication that i am on. 1st of all i am on cortef it is in tablet form and my daily intake has changed dramatically since then.2nd of all i am on a zomaction injection.but this is my question the zomaction injecton has nothing to do with addisons disease it has to do with hormone growth defiancy i am confused with this because i am wondering if you have addisons disease do you also have growth hormone defiancy whick is the zomaction injection

[Deanna L Aftab Guy, MD]

Depression is a very very broad symptom and it is very hard to make it solely the result of cortisol, in fact those without Addison's and who have depression actually have elevated cortisol(not sure why).
So if he is growing, compliant with his meds and has good vital signs and good blood sugar and salts in the blood and the calculated dose of cortef is appropriate for his surface area he is in good shape.
If they want to see another peds endo go to LWPES.org, click on find an endocrinologist and put in the zip code where they live, up will come a list of folks in their area, this is the Lawson Wilkins Pediatric Endocrinology website, this is the main association that pediatric endocrinologists belong to.
Also I may have failed to mention that if he is sick with fever or illness he needs to stress dose his cortef, so double or even triple, if he is not doing this and is sick he will definitely feel ill.
Measuring a baseline cortisol level may help but the medication itself will be measured, an acth stimulation test is the diagnostic test for Addison's, also he needs his thyroid tested and celiac antibodies, these are big contributors to other problems, maybe even to some depression.
His cortisol needs to be a little higher in the am and then again maybe 2 more times in the day to mimic his body's production.
Consider having them talk with their endo or seeking one more opinion or even working very closely with their pediatrician to get the advocacy they are wanting,

[luluB]

Thanks you for your response. My nephew lives in North Palm Beach and I know he is seeing a pediatric endocrinologist. This Dr has one other addison's patient;my nephew is her second case. My nephew was rechecked recently, and she felt that his depression, lack of focus and lethargy was not a result of inadequate doses of cortisol. She suggested a psycologist who Marvin is now seeing.
Both his Mom and I want to know if there is an objective  way to evaluate if his dose is correct. Can cortisol levels be measured throughout the day to help evaluate cortisol doses? Or is this not an accurate way to evaluate doses.
Thanks again for your time.
Lucy

[Deanna L Aftab Guy, MD]

Addison's is an autoimmune disorder which affects the adrenal glands, the old cause of this adrenal failure used to be tuberculosis-thanks goodness this is no longer as much of a problem, now we are finding more and more patients with antibodies to their adrenal gland, along with addison's many folks also have other autoimmune problems which can include the thyroid, the parathyroid, celiac disease, vitiligo, hair loss etc.
So if he is indeed having depression etc. he needs to see his endocrinologist ASAP, he may need more cortef or more fluorinef or he may not be taking his med correctly, we usually dose based on the normal need but at times of illness or fever we ask our patients to double or even triple their dose to mimic what our body's do during stress.
Where in florida are they and I can give you names of peds endocrinologists to see-I am surprised that his endocrinologist is not comfortable with Addison's, be sure they are an endocrinologist.

[miss_interested]

I'm not really sure however, I would do some furthur research on cortisol & florinef for future side effects...I wish you luck..