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Leukodystrophy Carers
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How to get Lorenzo's oil?

Hello everyone I have 10 year son who is suffering with ALD, and I'm in Virginia. I've been told that Lorenzo's Oil doesn't work. But me as a mom would like to try anything that may help. How is it possible to obtain the oil.

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I am surprised nobody has answered you yet on this. As far as I know all Lorenzo's oil in the USA comes via the Kennedy Kreiger Institute. The main challenge would be getting your insurance to pay for it.

As far as I know, many people opt for mustard seed oil. You can buy on Amazon.

I opted against it, then again, I'm a fully grown man. But, if it was my son that it could help I'd get him some double quick.

Anything is surely worth trying.

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Hi thank you but i need to ask what does the mustard seed oil do?

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Similar to LO, from what I've read. I bought some a couple of years back.

Sold as a hair care product, NOT FOR HUMAN CONSUMPTION on the label. Then again, LO is pretty much a poison.

I have AMN, zero evidence it is of any help for fully grown adults. Children? I couldn't say, plenty of parents swear by it.

ncbi.nlm.nih.gov/books/NBK1...

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Hi, you would need to discuss this with your doctors and ask to be referred to a specialist. If you start giving your son Lorenzo's oil he need to be monitored closely as the oil can affect blood counts and not just lowering long chain fats, so it is absolutely not advised to obtain the oil without medical supervision. The dose also has to be worked out for each individual. I completely understand your wish to give your son the oil, does he have any symptoms of ALD? If he is asymptomatic (without symptoms) then the most important thing to ensure is that he has regular MRI's and is followed closely by your doctors.

if I ca help any further then please contact me on karen@aldlife.org

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My son has unfortunately went from being a vibrant active 8 year old to being a bed written, uncommunicable, Gtube , epileptic amongst more child. I am at a lost for anything helping at this point. I have not lost hope and faith so we just try to keep him as comfortable as we can

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I am so sorry to hear this, it is the most difficult thing to watch your son deteriorate. Sadly there are no treatments which will stop cerebral ALD, once symptoms are so apparent. Lorenzo's oil would not be prescribed as it would have no effect. I hope you have good support from your doctors. My thoughts are with you and your family and if I can help in any way then please do get in touch.

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