I'm an ALD patient myself with a low fat diet (I have the addison-only fenotype). And I can tell you one thing about a fat free diet, you'll find ways in recreating dishes. I even made an ice cream that's fat free and darn close in texture and taste with 'real' ice cream. (tried it out on my family and friends, and they realise after a few bites that it isn't normal ice cream. But they can't figure out what it is instead. And they say that it tastes almost exactly the same).
Although I'm wondering what kind of fat free diet your son is following. Is it the Lorenzo's Oil diet or is it just fat restricted? (and which kind of fat restricted)
You mentioned that he has some behavioural issues. I strongly recommend that you see his doctor and check if this is caused by ALD (check with an MRI). In early stages you can treat the damage ALD does, so be adamant that they do this.
And don't be afraid that steroids stunt growth. The one you son gets when he has addison don't do the same thing as anabolic steroids. You have to do some some really weird stuff to stunt growth with corticosteroids (and stunted growth is the least of your problems then).
I have been taking corticosteroids from the age of 3, and I'm now 27 years old. I'm 6 feet tall, and I'm a full feet taller than my mother. So used as a substitute therapy they won't harm you sons growth.
And I can understand that your doctors don't know what you have. Adrenomyeloneuropathy didn't even have a name a few years back. And it wasn't even well known that carriers could get symptoms. I'm glad that the researchers here in The Netherlands did a lot of work to research this and give this a lot more publicity.
At the moment I have to go to work so I have to keep this short (I live in Europe, so bit of a time zone difference). I'll keep an eye on this discussion to answer any questions you might have for me.
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I'm an ALD patient myself with a low fat diet (I have the addison-only fenotype). And I can tell you one thing about a fat free diet, you'll find ways in recreating dishes. I even made an ice cream that's fat free and darn close in texture and taste with 'real' ice cream. (tried it out on my family and friends, and they realise after a few bites that it isn't normal ice cream. But they can't figure out what it is instead. And they say that it tastes almost exactly the same).
Although I'm wondering what kind of fat free diet your son is following. Is it the Lorenzo's Oil diet or is it just fat restricted? (and which kind of fat restricted)
You mentioned that he has some behavioural issues. I strongly recommend that you see his doctor and check if this is caused by ALD (check with an MRI). In early stages you can treat the damage ALD does, so be adamant that they do this.
And don't be afraid that steroids stunt growth. The one you son gets when he has addison don't do the same thing as anabolic steroids. You have to do some some really weird stuff to stunt growth with corticosteroids (and stunted growth is the least of your problems then).
I have been taking corticosteroids from the age of 3, and I'm now 27 years old. I'm 6 feet tall, and I'm a full feet taller than my mother. So used as a substitute therapy they won't harm you sons growth.
And I can understand that your doctors don't know what you have. Adrenomyeloneuropathy didn't even have a name a few years back. And it wasn't even well known that carriers could get symptoms. I'm glad that the researchers here in The Netherlands did a lot of work to research this and give this a lot more publicity.
At the moment I have to go to work so I have to keep this short (I live in Europe, so bit of a time zone difference). I'll keep an eye on this discussion to answer any questions you might have for me.
August 10, 2009 - 10:40pmThis Comment
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