endocrine failure

Hi all, I am hoping that someone out there can offer me a glimmer of hope!!

My 11 year old son has had brittle asthma since he was around 5 years old, but has been a severe asthmatic for 10 and a half years. He is in and out of hospital all the time and is on huge doses of medication to try and keep his asthma under control, which ofcourse it isn't. Jack is on daily steriods and has been for nearly 4 months this last stint and after his last hospital stay his consultant was very insistant the he be tested to see whether he was producing cortisone or not. This was done on Tue (5 days ago) and even though I was pretty sure of the outcome it still came as a shock to find out yesterday that he is in endocrine failure due to the continuous use of steriods in his life.

We are meeting with the top endocronoligist this week, but i am terrified I am going to lose my son through this awful disease. They think that his liver is starting to suffer and that he may infact become more dependent on high dosage of medication to keep him alive. I have heard that the replacemnt medication can indeed increase chances of cancer for him.

I guess what I am asking is, is there anyone out there in my position who can offer me some hope. Any advice would be so gratefully recieved.

Kate

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hi there kate

I was diagnosed with addison's disease about 2.5yrs ago! Its very similar to hypoadrenal states that can arise after long term steroid usage.

Please rest assured ive not heard anything about the meds increasing a persons risk of cancer.

If you are in adrenal (endochrine) failure due to long term steroids, you will be required to take hydrocortisone replacement therapy for a while! Your son may require this in just the short term or may require this for life.

I know this sounds hard and its difficult to find out there is another problem however provided that he takes the replacement steroids everyday at the specific times he should be fine and have no problems with the adrenal problem-problems do arise however if he gets unwell, temp or vomiting or diarohoea this may mean that in these situations the replacement dose needs to be doubled- the specialist will be able to advise when etc!

Please rest assured that unlike true adrenal failure - ie addison's where your own body destroys the adrenal tissue leaving it totally incapable of repair, secondary suppression from long term steroids can be reverseable given time-the tissue isnt destroyed and can start to produce costisol again if it has chance to get into a regular pattern again! This can be difficult when your son is on high dose steroids so often and could take time but it is still possible that this is not a life long thing.

Please feel free to private message me if you need any further information. As i said i haven't heard that the replacement steroids increase your risk of cancer so would be inclined to think this isnt the case, i will ask my endo dr next time i see him though as thats freaked me out a bit as ive got the autoimmune version of this illness. Hopefully someone else could confirm this isnt the case too to put both our minds at rest!

Oh - i tend to take hydrocostisone at 8am 12pm and 6pm at varying doses depending on how well i am but if i am delayed on these times even by an hour i can feel rather unwell!

Good luck with it all kate and i hope your son gets on ok with the specialist. Pm me if you need any other help and take care.

Lotsa lv kat Xx

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Sorry I havn't got any advice, just wanted to say that I'm thinking of you and your son at this very hard time. I hope that the specialist will be able to offer you some hope, and calm your fears.

Best wishes

Ally x