We just got back our latest levels and they are still high. Homocystine 91, Met 50. So, we are starting Cystadane (aka:Betaine). We are starting with a low dose 500mg for a few days to make sure it doesn't give him a tummy ache and then go up to one full scoop, 1000mg which is the full therapeutic dose. We also changed his formula cocktail from 65gm hominex to 75gm with 8gm of similac for 16oz total. We also increased hominex to 6gm per ounce (from 5gm) for extra formula at night. We will redraw blood in two weeks. Doctor not sure why his MET is normal but the homocystine is still high, MET turns into homocystine.
I'm a bit nervous about cystadane, I don't know why. There are no side effects besides tummy aches and nausea but I hate giving my kids any kind of drug I'm not familiar with. Most people with HCU do end up on cystadane at some point, haven't meet someone not on it, but usually not until 2-3yrs of age. Kaden is only 10months and we weren't able to control his levels with food and formula alone, not good in my eyes.