That was the prognosis today at Ian's Endocrinologist appointment.
Even though I went into the appointment hoping for answers and a clear plan of action I am ok with the way everything went. Ian's Endo Dr. Lazono is awesome and I really like him, Ian even seemed to be comfortable with him which is huge for Ian. We spent about two hours with Dr. Lazono today. He went over Ian's medical history and lifestyle as well as Dave and I's and our families. Then he explained to us how the body grows, then he went into what IGF-1 is and what it does.
The simple verison of this is that IGF-1 is in your liver. Your growth hormones send a signal to the liver telling it to grow then the IGF-1 is supposed to send a signal to your growth plates so you will actually grow. Since Ian's IGF-1 levels are so low (and they are very low according to Dr. Lazono)it means that they aren't working properly therefore not sending the signals to the growth plates.
Once Dr. Lazano was sure we understood how the body worked he went over the test that Ian had done. Everything looked very good except for the IGF-1 levels. This is actually really good news because it means that there isn't anything causing the IGF-1 levels to be so low like a liver disease or celiacs disease. The test also showed that Ian's Growth Hormones levels are great meaning that the pituitary gland and his thyroid are working properly.
The plan from here is to go back in April (3 months). They will measure Ian then and calculate his growth velocity. If it comes back the same or lower they will have to run test. Those test will include more blood work to see the IGF-1, thyroid, and growth hormone levels, an MRI to make sure their isn't some sort of mass in the pituitary gland, and a stimulation test. The stimulation test involves them injecting hormones into Ian and then taking blood to see how his body reacts to that.
If these test still point to the IGF-1 (which Dr. Lazona thinks they will) then we would have to start treatments. The treatment for this would be ton inject Ian with a synthetic IGF-1 hormone that would send the proper signals to the growth plates. The injections would be given during meals to avoid hyperglycemia. We didn't go into great detail about this part of it because we are not really 100% certain it will come to this so he only explained this to us as a heads up as to what to expect.
One of the last things we discussed was that IGF-1 deficiency was actually discovered in Jewish people that moved to Israel during the Russian invasion of Afghanistan in the 70's. A Dr. Lorna was confused as to why these Jewish men were so much smaller than the ones in Israel. What he found was their IGF-1 levels were low due to malnutrition (another cause but not for Ian). It is still a rare disease but Dr. Lazona is treating a few patients for this right now.
So I guess we will wait and see what April holds for us. Until then it's life as normal for us.