We heard from Dr. Cohen and we have finally figured out what is going on with Palmer. The reason she is so small is b/c she has IGFD (Insulin-like Growth Factor Deficiency). Basically, she is deficient in one of the hormones to help her grow. Her stimulus testing showed that her growth hormones were normal under stimulation, which meant that the deficiency was in the IGF, which is primarily procudced in the liver. All the specifics are really technical and confusing.
Here is a little info I found on it: The process of growth is complicated. Insulin-like Growth Factor Deficiency also called IGFD or IGF-1 is a relatively new discovery. There are many links in the chain (so to speak) which must all work correctly and work together before healthy growth can happen. If there is a kink in the process anywhere at all the growth process may be halted or disrupted so that growth is occuring but at a less than normal rate. This new discovery about Insulin-like Growth Factors is extremely helpful to families who have been previously told that their child's growth hormone levels were normal because children with low IGF-1 usually do not respond well to growth hormone therapy-they need IGFD therapy.
The next step for us is to start therapy, which is two injections a day. Her medication, Increlex, will be delivered to our door every month, b/c it is very rare. A nurse is going to come to our house to train me how to give Palmer the injections. As far as side effects go, the most common thing is hypoglycemia (her blood sugar could drop). Because this hormone is similar to insulin, it has the same type of effect.
I feel much better that we have finally figured out what is going on. I am very thankful that this is something treatable and won't effect her cognitive development. I'm a little anxious about the injections. Palmer and I are going to have to get used to the injections. I know if will be hard for her at first, but she will get used to it. Please pray for our family as we adjust to everything.