Saturday, August 22, 2009

August Level Update

So, we got Kaden's august blood draw levels and they were not good. Last month they were 111 and now 117, even higher (safe is under 60). I spoke with the doctor and we have changed his formula "cocktail" by decreasing similac and increasing Hominex. Hopefully this will bring his numbers back down to stable like they were in the spring. If not, we will have to start giving him Betaine, an amino acid that gets rid of homocystine in the blood. Many HCU patients are on Betaine and it is a naturally occuring product but K's doctor is wanting to hold off on if if we can. So, back to the drawing board for treatment......

Thursday, August 20, 2009


I'm starting this blog to help me and other mom's with children who have HCU (homocystinuria). My son Kaden got diagnosed after two abnormal newborn screening tests at 8 weeks old. After a few months full of fear and hopelessness I can now say I KNOW my son will be fine. I have jumped into this feet first and am doing everything I can to track his diet and follow his treatment plan. Since he is just now getting bored with baby food (he will be 10 months in 4 days) the real fun of being a crafty cook is going to begin! I'm fortune to be a stay at home mom so I can devote a lot of time to researching foods methionine/protein values and work on my cooking skills. I have found a few moms online who have helped me tremendously with low protein recipes. Unfortunately, most of there kids are older or they are overseas so I can't get the same ingredients or cook those recipes for Kaden, just yet. So far Kaden is a good eater but he is only 10 months old so certain textures he is just not ready for even with 7 teeth. So, with that said, this is Kaden's journey with HCU!

Total Homocystine Values and MET values

We started doing monthly blood draws when Kaden was about 3 months old. He has been on hominex-1 formula since 8 weeks old as well as vitamin B6 and a compound of folic acid and B12. The saftey zone is under 60 for total homocystine and under 1,000 for MET.

These have been his values:
July 22,2009
111.7 Homocystine
257 MET

June 8, 2009
55.9 H
68.8 MET

May 3, 2009
32 H
11 MET

As you can see we were doing great until July! That month, I stopped breastfeeding and introduced similac. We also increased his protein intake since his numbers had been so good. We added more hominex to his diet, and deceased his similac and protein intake to try to get his numbers back down. We will be getting August values soon, so fingers crossed they are good!!