Ok, so now I have a Facebook page for the kids, called 'Raising Rare and Beautiful Children with CPT 2 Deficiency'. I reference the blog on the page too so maybe I'll get some more views here. Which means I should probably write more stuff! haha
I have found over time that my information is different and I am still learning in this process. Please do not take everything I say as gospel because what I wrote originally wasn't quite right. The concept wasn't far off, but the delivery wasn't correct. I hate being wrong so it takes a bit for me to admit that! But I don't want to give people the wrong information either.
Today was a very long day...tomorrow I get the kiddos for my time of the week with them. They had a successful swim at the pool last week so I am guessing they are going to want to go again. MCT oil before the trip swimming is key. Two teaspoons in a drink and off we go!
You are not alone. I am an adult with CPT2 issues, waiting for medical help. How I wish I had had a mom like you, and a diagnosis in my teens. It would have saved me so much pain. You are doing a great job as your children's medical advocate.
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