I believe the single biggest concern as a parent of an FHS child was that of eating--gaining weight and height. Even after we got a diagnosis and I knew that that was one of the main issues, it still concerned me. And since I got another email from a concerned parent this morning, I thought I'd briefly address the issue and include these growth charts to help lessen the fears of our amazing FHS parents. (It is hard to be a parent of these children and be concerned about their health issues.)
First of all, they just don't seem interested in eating. When they are younger, they don't have much of an appetite and they don't care about food much at all. Before we had a diagnosis and the doctors were concerned, they suggested a feeding tube. Now, if we had known what we do now, we would have NEVER done that because it didn't fix anything, but it did create a whole other set of problems. Even though our son was getting 2,000 calories a day, he wasn't gaining any weight. The gastroenterologist couldn't believe it, but it was true. You can put all the calories in them you want, but they won't grow or gain much weight at all. Remember, dwarfism is part of the syndrome. You can feed a dwarf all you want, but he won't grow taller. It is genetic. We cannot reprogram that.
So, what we did do eventually worked, and that is what I suggest. First of all, I would give our son "super shakes" with rice milk or rice ice cream, liquid amino acids, and vitamins. I also gave him tuna fish with lots of mayonnaise (fats and fish oils) for lunch. THAT is when he began eating and talking more, and other FHS parents have reported this as well. These foods are known as "brain foods", and they help the body in many ways, including increasing myelination of the brain (the fatty tissues which help the brain nerve cells connect and communicate.)
Secondly, we let him eat whatever he wanted, as long as there was a good balance of proteins, carbohydrates, and fats. He liked oatmeal, so we would put lots of heavy cream and sugar in it (more fats and calories.) He loved McDonald's french fries, so we would get him a small fry for a snack every evening. He liked chicken nuggets, so I would make those for him every night because he would eat them. He seemed to really enjoy (and still does enjoy) soft, salty foods like mashed potatoes. I would feed him three meals a day and a hefty snack at bedtime. Remember, while this will help them eat a little more and do some other brain-feeding types of things, they WILL NOT gain a lot of weight, nor grow in height. This comes more at puberty, so just be patient.
One more warning about growth hormone. The doctors want to "help" and do something, but there isn't really anything they can do. The children who go through years of hormone shots don't end up any taller than 5 feet (152 cm) no matter how many years of hormone shots they are forced to endure. (I'm not sure about the one red dot at 64"-- I wonder if that person truly had FHS.) If a child's parents are short, the child will end up at around 4 ft. 6 inches in height (137 cm), and if the child's parents are taller, the child almost always ends up to be a little taller for an FHS adult at 5 feet (152 cm). And, several parents have reported negative consequences because of these shots, which don't help in the end anyway. Please don't put your child through this. Feed them well, love them, and embrace the differences. Our son was called "the mouse" because his friends and cousins could hide him anywhere during hide-and-seek and no one could ever find him. In Sunday School he was baby Jesus because he was the only one who could fit in the cradle. Little is cute, not bad.
To see pictures of our FHS son at different ages, click HERE.
