Newbies needing some advice 😊 - Leukodystrophy Ca...

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Newbies needing some advice 😊

Jodieandreuben
Jodieandreuben

Hi everyone. I’m new to this site (not new to ald, unfortunately my son Reuben was diagnosed about 7 years ago, he’s 10 now, with his diagnosis my dad also got his diagnosis finally.)

Just wanting a little bit of help regarding lorenzos oil. Reuben should be on about 12mls a day, but we are really struggling to get it down him. I’ve tried mixing it with lots of things, it doesn’t help that he’s already fussy enough with textures etc due to his autism. Obviously he needs to have it whether he likes it or not, but I was wondering if anyone had any miracles of what to mix it with or if it’s more of a “suck it up and get it down you,” situation xx

6 Replies
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Hiya Jodieandreuben. At first I just to give it to my son in Readybrek. That worked for a while, but then they changed something in the oil and my son couldn’t eat it, but it’s worth a try. After, my son would have it in Muller Light toffee yogurt. You will need to keep mixing it though, as the oil floats on top otherwise. My son was on 50mls of Lorenzo’s Oil, and 4mls of Walnut Oil, so a lot more to hide. 12mls should be a lot easier to hide. I hope this helps. Karen.

Thank you. It’s actuslly 30mls he should be having ice realised today 😫

The main problem that we are facing is that he’s got sensory processing problems too and anything with the consistency of yoghurt, custard, sauces etc are a no go. Xx

Maybe try the Readybrek, as you don’t see the oil at all in that, and as it’s breakfast, it gets it over with first thing.

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in reply to Jodieandreuben

What about putting it in ice cream and blending it in the blender?

AlexTLC
AlexTLCAdministrator

Hi Jodie, Just wondered if you have been in contact with us (ALD Life) We can help in lots of ways, if you would like some support please contact karen@aldlife.org

My mum use to melt down my brothers in hot water then it wasn't so thick, then followed with a glass of milk after he taken it