Child/Adult ALD

[kimmy]

Don't know if this is a silly question or not but my son was diagnosed with ALD when he was 10.... He's now 27 so does he now have adult ALD or is that only if you're diagnosed as an adult ?

[monkeybus]

How's he handling it kimmy

[monkeybus in reply to monkeybus]

I mean, his physical condition? Been a few of these adult ALD posts lately.

[kimmy in reply to monkeybus]

Apart from some stiffness in his legs he does really well... doesn't go out anywhere on his own either but that's more to do with his sight & learning difficulties

[COwithAMN Administrator AMN EASIER Volunteer]

Hi Kimmy

Definitely not a silly question! I know you and your son a little (from his teenage years), and from what I have seen I'd say he is doing very well. His condition seems to have stabilised and he seems able to live a full life within certain limitations. I will let you explain.

Maybe he is an example of how AMN/ALD are so variable sometimes, but also of how seemingly bad diagnoses can progress in ways that still give all of us hope.

With very best wishes,

Chris

[kimmy]

Ok here goes.... Danny was diagnosed with ALD in June 2000, along with his younger brother Billy (who died in January 2001 8 months after diagnosis) they both started taking Lorenzo's Oil... sadly didn't help Billy but I truly believe it's helping Danny. Danny is registered blind & had mild learning difficulties. However his ALD has stabilised, an MRI scan done December last year shows there has been no changes to the scan he had done back in 2000.

[bsc78]

Hi Kimmy--

Glad to hear that your son has stabilized. I don't know how old he was when diagnosed and when he started experiencing cerebral symptoms, but there are a number of documented cases that indicate going through puberty often halts cerebral deterioration. Perhaps this explains your son's stabilization. It sounds like your son, at 27, falls between two phenotypes: childhood cerebral and AMN.

Brian

[randal_mcdon]

Hi Kimmy, I've sent you a message but I'd love to learn more about Danny's story. It is very much of personal interest to me. Thanks Randal