We got Kaden's June levels back and they were great. His methionine was 40 (normal!!) and his homocystine was 33. I'm so happy that he has been having great numbers with the low amount of medication he is on. At the last doctor appointment, the Dr was so surprised to see that he was still on only 1 scoop of betaine. For his weight and age he should be on a much higher dose, but his body is processing his methionine (protein) so well he isn't needing it.
Kaden hasn't been drinking his formula like he should be. Everyday, he needs to drink 17 oz, but has only been drinking 13 oz. I was putting his betaine in his formula, but since he hasn't been drinking all of it, I'm now putting it in juice. Betaine is a medication that takes homocystine (an amino acid found in protein) and turns it into methionine (an amino acid). Homocystine can be toxic to the body if it gets to high, but methionine can be high and has no effect on the body. I'm hoping by giving the betaine separately from his formula, and making sure he gets the full dose everyday, his homocystine levels can come down even lower. Our new daily routine is 7 oz of formula in the morning, 4 oz of juice with betaine at lunch, 5 oz of formula after afternoon nap and 5 oz formula before bed. We have been doing this routine for the past week and are doing labs on Thursday. Fingers crossed for lower levels with the same dose of meds!! xxxx