Well, we met with a geneticist at Primary Children's this morning. She explained a lot to us about VLCAD and frankly, most of it went over my head. Luckily my mom came along (thanks Mom! Love you!) and took notes and Dr. Warnock gave us paper work. Ill explain as much as I can and what I miss I will include in another post.
We all have an enzyme that cuts the carbon chain of the fat into groups of two and then we can make energy out of those groups of two. Well, Tyler's enzyme doesn't do this correctly. And it's only with certain carbon chains-mainly 14 long chain. So this means that he can't go long periods of time without eating. The rule of thumb is for every pound he can go a half hour without eating, so right now he can go 3 1/2 hours without eating. Dr. Warnock gave us medicine he needs to take daily and he is on a special formula that has a certain oil in it for him.
When Tyler gets older he will live a perfectly normal life as long as he follows the rules. The only restriction will be he can't play any sports that have a long endurance-cross country, triathalons and what not. He can play football, soccer, baseball, basketball. He will just need to keep his carbs up.
Dr. Warnock informed us if he gets sick and can't keep food in, he will be hospitalized. We will just need to be careful over the next few months with the flu, cold and whooping cough. We will be back up in 4 months when we start introducing food to him.
We are so blessed to have such amazing family and friends who supports us and prays for us. We love and appreciate you all.
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