Justine at the good life has a little boy with VLCAD, very long chain acyl-CoA dehydrogenase deficiency. She has to limit his intake of fats and increase (moderately) his intake of medium chain triglycerides via palm kernel oil and coconut oil, so a lot of the recipes are really similar to those for LPLD and I've definitely been inspired by some of her stuff! She even does the fancy nutrition facts for each of her recipes, pretty swanky! And that reminds me, I need to buy some powdered peanut butter on her recommendation...
If you're looking for something to share with your primary care physician on LPLD, there is FINALLY a good resource! NORD has a physician guide for LPLD now, and I'm telling you, it is GOOD! I've seen a lot of web sites that were secretly put out there by drug companies that make LPLD sound even worse than it is, I guess to make you feel more helpless and like you need their expensive solution. This web site is NOT like that! Very reasonable in its approach, and helpful. Check it out!
For those of you getting frustrated with your or your family member's LPLD, nothing feels better than knowing you are not alone. My friend Quinyang has been able to put together a nice little group on Facebook (my own Facebook support group attempt never got a single member that actually had LPLD in it, ha!) with good posts and discussions. I enjoy interacting with others in the same boat, even if it's just on the internet!
|Monica trying to look sophisticated at her Little Flowers tea - lots of moms made food she could eat! Hurray for community!|
What about you? Do you have favorite web sites on LPLD?