8month old ALD

[Rosita5]

My son was diagnosed at 1 month with ALD. His cortisol levels were checked and his HCT keeps going a little higher than the ACT (I hope I am stating this correctly) and his first MRI came back normal. We are keep a close eye on him, I read constantly about leukodystrophy and Addison’s. Today I noticed his tongue seems to have a black pigmentation, I wonder if this is the first sign of what’s to come. He’s recovering from a cold but overall seems normal. I worry about about how his quality of life will be, I am hopeful because we caught it early that we will be able to help him through the hurdles.

I am slightly venting but also, I want to know what’s it’s like living with Addison’s. The day to day? Is it difficult to take supplemental hydrocortisone? Does th disease make you prone to depression? Were you surrounded by a good support group/family? What’s life like without supplements? Thank you for your time.

Sincerely,

A concerned mother

[AussieBob]

I take it he has been genetically diagnosed?

[Rosita5 in reply to AussieBob]

Yes. He has.

[AussieBob]

I see do you know there is a support group for ALD carrier mums and one for Adrenal Insufficiency. R U interest

[Rosita5 in reply to AussieBob]

I will definitely look for those! Thank you

[COwithAMN Administrator AMN EASIER Volunteer in reply to Rosita5]

Go to healthunlocked.com/aldlife as a start. And then aldlife.org/

[Hidden in reply to COwithAMN]

Thank you COwithAMN and AussieBob, I have replied introducing myself

[Peteraf]

Hi, I have 2 sons with Addisons (& ALD) - although fine now due to Bone Marrow transplants. Taking hyrocortisone has not been an issue. They have been taking it for the last 10 years and have had no side affects and live their lives normally. They do however need to ensure they are protected with sun screen on hot days and we (they) can increase their dosage if they feel off-colour.

They both played rugby during their school years and do carry an epipen in case of acute injury (broken bone etc).

I this helps.

[Rosita5 in reply to Peteraf]

This is amazing to hear. Overall they are happy boys?

[Peteraf in reply to Rosita5]

Very happy. Doing well at University and living a normal life. Taking hydrocortison & fludrocortisone 3 times a day is no big deal for them - it just becomes routine.

[Rosita5 in reply to Peteraf]

Thank you for sharing.

[Hidden in reply to Rosita5]

Hi Rosita5, I am the Support Services Manager from the charity ALD Life, I can help with any questions you may have and we also have some really good written information. Please email me [e-mail] and I will help as much as I ca.

[AussieBob]

Female Carriers of ALD ; Support for ALD; Adrenal Insufficiency Support; ALD Support are a few to join

[Rosita5 in reply to AussieBob]

I did not locate these groups on the forum, only a fight ALD one.

[AussieBob in reply to Rosita5]

Tried FB?