Sorry for the late response, got swamped after I wrote my original message. And I didn't mean to suggest you're not doing enough. You are doing more than a lot of parents I know. You are asking questions and doing the best you can for your son given your situation. And trust me, I've seen some stark contrasts with what you are doing.
I can strongly recommend the following page on the x-ald.nl website (by the Dutch researcher Stephan Kemp). It has some good information on carriers of the disease:
http://www.x-ald.nl/heterozygotes.htm
What I can recommend is contacting the Kennedy Krieger Institute to get an official diagnosis that you are a carrier with neurological symptoms. With that diagnosis you should be to be eligible for disability payments. And I also would suggest contacting the ULF. They should have resources, or know people, that can help with the diagnosis and with getting disability payments. They also can bring you in contact with other parents (for tips, or just sharing stories).
This will not cure you, but make you more comfortable (treatments can be better fine-tuned to your needs). And the disability payments will give you the 'peace of mind' so you can focus on the care of your son (I'm not saying you're not doing that. But this problem is an unnecessary burden on you).
About the diet. I'm a bit puzzled that you need to give him walnut oil. You can replace the essential fatty acids your son is not getting by supplements. They will give your son the fatty acids he needs without the addition of other unnecessary fats. The same thing is being done for me. I have vitamin and fatty acid supplements that don't add a lot of unnecessary fats to my diet. I do have to mention though that this is more expensive, but gives a lot more freedom (the vitamins I have to pay for myself, the fatty acid supplements are paid for by my insurance company). This could be worth the effort, considering the walnut oil is 9 grams of the 14 grams your son can have on a daily basis.
And the diet can indeed be expensive. Especially in the US where processed foods are cheaper than the options your son is allowed to eat (I to have sizeable portion of my wages reserved for speciality items). I can give you a lot of tips to help with the diet as I've been on it for 21 years. Although it would a bit much to just spit it out on a page here (I probably can write a book on the subject). Could you give some details on the kinds of foods you buy for your son? I might be able to give some tips or alternatives for it.
One of the tips I can give is a vegetable garden if you have a yard. I know you have problems with your legs so it might be hard to establish the garden or do 'grunt work' on it. But you might be able to get some help from friends or family with the initial labour investment. And then you only have to do some maintenance work on the garden (I do recommend using mulch to suppress weeds so you don't have weed as often, or as much). This is not a solution for everyone, but it does save me a lot of money on a yearly basis (thanks to my mother and father who have a quite sizeable vegetable garden).
(And why aren't there any white lines between paragraphs on this website. It makes comments really hard to read...)
Comment Reply
Sorry for the late response, got swamped after I wrote my original message. And I didn't mean to suggest you're not doing enough. You are doing more than a lot of parents I know. You are asking questions and doing the best you can for your son given your situation. And trust me, I've seen some stark contrasts with what you are doing.
I can strongly recommend the following page on the x-ald.nl website (by the Dutch researcher Stephan Kemp). It has some good information on carriers of the disease:
http://www.x-ald.nl/heterozygotes.htm
What I can recommend is contacting the Kennedy Krieger Institute to get an official diagnosis that you are a carrier with neurological symptoms. With that diagnosis you should be to be eligible for disability payments. And I also would suggest contacting the ULF. They should have resources, or know people, that can help with the diagnosis and with getting disability payments. They also can bring you in contact with other parents (for tips, or just sharing stories).
This will not cure you, but make you more comfortable (treatments can be better fine-tuned to your needs). And the disability payments will give you the 'peace of mind' so you can focus on the care of your son (I'm not saying you're not doing that. But this problem is an unnecessary burden on you).
About the diet. I'm a bit puzzled that you need to give him walnut oil. You can replace the essential fatty acids your son is not getting by supplements. They will give your son the fatty acids he needs without the addition of other unnecessary fats. The same thing is being done for me. I have vitamin and fatty acid supplements that don't add a lot of unnecessary fats to my diet. I do have to mention though that this is more expensive, but gives a lot more freedom (the vitamins I have to pay for myself, the fatty acid supplements are paid for by my insurance company). This could be worth the effort, considering the walnut oil is 9 grams of the 14 grams your son can have on a daily basis.
And the diet can indeed be expensive. Especially in the US where processed foods are cheaper than the options your son is allowed to eat (I to have sizeable portion of my wages reserved for speciality items). I can give you a lot of tips to help with the diet as I've been on it for 21 years. Although it would a bit much to just spit it out on a page here (I probably can write a book on the subject). Could you give some details on the kinds of foods you buy for your son? I might be able to give some tips or alternatives for it.
One of the tips I can give is a vegetable garden if you have a yard. I know you have problems with your legs so it might be hard to establish the garden or do 'grunt work' on it. But you might be able to get some help from friends or family with the initial labour investment. And then you only have to do some maintenance work on the garden (I do recommend using mulch to suppress weeds so you don't have weed as often, or as much). This is not a solution for everyone, but it does save me a lot of money on a yearly basis (thanks to my mother and father who have a quite sizeable vegetable garden).
(And why aren't there any white lines between paragraphs on this website. It makes comments really hard to read...)
August 16, 2009 - 3:21amThis Comment
Reply