secondary adrenal gland insufficiency in a 1 year old

[Angela_Christine]

Hello everyone. When my son was just 3 months old he was placed on an excessive amount of prenisone  which in turn caused him to have an adrenal gland insufficiency which was discovered after he went unconscious at 5 and a half months old. We were told that when this diagnosis was determined his cortisol levels were below 0.00. After many hospital stays and almost a year since his "apparent life threatening event" as the doctors kept referring it as, my son has become a stronger and healthier little boy. His last cortisol check was almost a 6 (which I assume is a decent number and may indicate the adrenal gland starting ton function.) However, my question is that still to this day my son will scream out several times a day but mostly at night which sounds like a painful scream. Sometimes there is nothing I can do to sooth him. Of course we have taken into consideration the typical 1 year old pains but we have other children who have never acted out as often indicated such a level of discomfort. Therefore, with adrenal gland insufficiency is there a level of constant pain that I may not be aware of? Also are there techniques besides the typical warm bath, tylenol solutions? Also, are there any long term concerns that I should be aware of as he continues to grow and mature? I would appreciate any and all insight. Thank you.

[rumpled]

Primary is adrenal - secondary is pituitary - he has a pituitary issue as well? If so, that all has to be watched and he needs a good pituitary neuro-endo.

[rumpled]

I am so sorry to hear about your son. I know steroids are important for some things, but sadly it is overlooked about the impact on some - some people can handle the load but others drop into AI, others into Cushing's.

I have had both Cushing's and now I am AI as my adrenals were removed to resolve the Cushing's.

As for the pain, yes, there is pain. Cortisol is an anti-inflammatory. So when there is a wide swing is cortisol, the body is not happy with the loss of cortisol. When I went from high to low (I was cyclical) it was very painful.  There are some that say it is akin to a heroin withdrawal but I have never done that so I don't know.  Sorry, warm baths is just not enough. He needs cortisol - it may be that he could just get a tiny bit just to tide him over. I am hoping your doc gives you extra, and you cut up pills. I get 10mg pills and carry around cut up pills so try giving 1/4 a pill and see if that helps. Or salt, or something salty.

Is he on regular replacement? When and how is he replaced? How is he stressed dosed? How do you give him extra salt? Sodium is a critical part of low cortisol and that can help a lot in keeping cortisol normalized. In fact, I take another medication to help retain sodium - fludrocortisone. Is your son on that med? How are his sodium and potassium levels? It can be in some that sodium is good but you need to avoid high levels of potassium like bananas if he is ill (but I am odd, I need potassium as I drop in both so I need both when sick so you have to know tests).

Do you have an emergency set up for him - a medic alert tag, an injectable medication and needle, instructions and extra meds, and something to prevent vomiting? For us, loss of fluids (vomiting or runs) is dangerous, so it has to be stopped or we need fluids in the hospital ASAP.

As for long term, it is more like management... making sure people around him are aware so that if he gets sick he gets correct treatment right away. Also when he plays he needs fluids and salt (we people without adrenals are loving the nuun tablets as low sugar but high salt) more than normal people. He needs a salty diet (I carry salt with me) like pickles and olives and stuff - when I get sick bouillon cubes are my friend.

What replacement is he on - hydrocortisone, prednisone or dex? HC is the norm as can imitate a normal body...