Adrenal Insufficiency- Addisons Disease

[Shadyxx]

Hi my 7 year old has been diagnosed with the above. It’s a rare disease. Has anyone had an experience with it? Any help and/or advise would be appreciated x

[barry1010]

I have heard of this but know nothing about it. I do have experience of another rare disease and know how worrying and frightening a diagnosis is. It must be worse when it is your child that has been diagnosed.

I am a great believer in online support groups to learn as much as possible about the disease and, more importantly, to talk to others who are in the same boat. This one has lots of information about the disease and forums.
It may help https://www.addisonsdisease.org.uk/

[Sqad]

It is a rare disease and my experience of it is limited to adults, never seen it in children.
Treatable and one can live a fairly normal life with it.

[Peter Pedant]

very specialised area. Rather than ask us 'walk-ins' it wd be better to refer back to the Hospital, ( I dont imagine the GP is doing this by himself) and ask them

will need cortisol and or fludro replacement depending on the cause, and honestly I dont think AB is suitable

oh, and dont forget to tell any marauding anaesthetist - they need to double the steroid replacement - eek too technical

[Peter Pedant]

oh here we are.

Review Article Pediatric Adrenal Insufficiency:Diagnosis,Management, andNewTherapies

sasigam bowden is the author

int J of Peds I think

This is not a common disease: there may bbot be a parents' group

[Ringlet]

After taking moderately high doses of Prednisolone for 6 years to treat Polymyalgia Rheumatica, I have recently been diagnosed with steroid-induced Addison's Disease/adrenal insufficiency.
The diagnosis was long and arduous and it was a relief when an answer was found.
My understanding of the condition is that it can successfully be treated with a proper amount of replacement cortico-steroid.
At present I am still seeing an endocrinologist to try to determine the"proper amount".
This involves measurement of any existing cortisol and aldosterone levels in my body, and adjustment of replacement steroids to suit.
I would think that the process of "balance" of any existing residual hormone in the child's body and the administration of artificial steroid hormone would be similar.
I have been told that with correct treatment, I can lead a normal active life. I have no reason to doubt this advice, and I am sure the same would apply to a child.
I hope all is well with your 7 year old.
You asked for advice, so I am going to stick my neck out and offer a small piece.
Your 7 year old is possibly worrying a lot about the diagnsosis without expressing the worry. If this were my child, I would seek out some psychological help for him/her in dealing - not so much with the condition - but with the obvious worry of the adults in the family.
Best wishes.

[anneasquith]

Ringlet, an excellent post , thanks .

[Peter Pedant]

um not about paediatric adrenal sufficiency tho
excellent as it is

[anneasquith]

PP, still very interesting though ?

[Peter Pedant]

fascinating and Sasignam bowden who IS a prof of paeds specialising in this has written lots

[puzzled54]

It might be worth joining the Facebook group on adrenal insufficiency as you can talk to others with the same condition.