With Kaden's numbers being a bit high last month, I asked his dietitian and metabolic doctor to go over his charts and see what can be done to try and lower his numbers. I faxed them my perfectly charted MET daily values for the past 3 months, wrote them a book on his diet and formula intake, and reminded them of his medicine doses and when he takes them. Kaden's dietitian is wonderful! She had a meeting with his doctor and got back to me within 24 hours. We are going to increase his betaine medication from 1gm to 2gm a day. This is a really easy change and I'm happy we aren't changing his diet or formula. This is just his powder medication I put in his juice everyday, super easy to add 2 scoop from 1. The only concern is this medication can cause tummy troubles if given in large amounts. So, fingers crossed Kaden can handle all his betaine in one dose. I don't know how I would add another medication dose right now. Currently, he takes 3 cups of formula, 1 cup of betaine in juice and 2 syringes of vitamins a day. Going to be hopeful that he can tolerate the change and try not to worry about it unless I see some tummy issues.
(sorry for such a bad picture, we have a stinky camera)
Bridgett
I hope the medication helps level it out more. Sorry to hear this is so challenging but you are right, he is an angel!
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