Finally... an endocrinologist

After over a year of trying to figure out why my little Slobber Rocket isn't growing very quickly I think we finally got to a doctor who can help us. She is a bit over 3 hrs away at St Louis Children's Hospital (an absolutely beautiful and amazing facility created just for little ones) but she is committed to making sure he is okay and I really like her. We took Slobber Rocket to see her for the first time on Friday. She did a very thorough exam on him. Measured his height, weight, head circumference, wing span, inseam... hands and feet. Anything you can think of. A whole lot of history questions. A lot of poking, feeling and making sure he isn't sick and all of his organs seem okay. Lots of looking for signs of dysmorphic features that would indicate a congenital disorder.

Then... music to my ears... or well music to my ears was at the beginning but I didn't want to tell the story that way. :) She said "well, this is not a nutritional thing, his BMI is good... he is just so short that he doesn't NEED to gain weight". I know, that seems like a "duh" to me too but if you have kept up with our story, I have been told numerous times that he just simply doesn't get enough calories. I must say our ped has stuck it out with me and worked with me when I insisted the gastro was wrong so I can't blame her much. Anyway there is something going on with him and now we are working to figure it out. She assured me that we were in the right place and that she would help us.

Anyway the basic plan of action is to make sure he is systemically okay. He had a urine collection and blood work while we were there. She is testing for diabetes, thyroid problems, celiacs, for some byproduct hormone issues (basically a screen for a hormone problem since growth hormone isn't available at all times during the day), kidney issues... I think that kind of covers it. If any of those tests come back abnormal we will deal with it. If his screens come back abnormal then she will have us come back up very soon and we will do what is called a "stim test" (short for stimulation test) where SR will be hooked to an IV, given medication to stimulate growth hormones, and have blood drawn over the course of about 3 hrs. If the hormone screens are wonkey, he will also likely have a brain MRI to make sure his pituitary glad is okay. If all of that is "normal" we will go back in 5-6 months for another set of measurements and then again when he is about 3. If by 3, he is not growing and is still very low on the growth chart in height, we will do the Stim test then and she will recommend hormone injections for sure at that time whether he has an identifiable hormone problem or not. She said by 3 children will likely never catch up to their peers without help. Which is not a problem if you are going to be 5'5" or 5'6" but we have to decide if we are okay with him being 5'1" or so as an adult and weigh the pros and cons of that. The injections may only give him a few inches or 4 or 5... it is kind of hard to tell. So there is a lot of option weighing.

But I did leave feeling reassured that I know my kids the best and that if I keep fighting for them then I will get them what they need. I also left with a renewed sense that doctors are humans and it is absolutely okay to challenge them when you think they are wrong. I think so many people elevate doctors to some position of be all, know all and really they are people. Yes, people who have studied a lot about medicine, and their field but still people. And intuition seems to have a good deal of weight and parents are the best source of intuition. So challenge your doctors. I pretty much always want my doctor to prove things to me. I know I am a pain in the neck sometimes but they couldn't prove to me that SR was malnourished or FTT so I refused to believe it because I know how we take care of him. And if they could prove that he was malnourished then they were going to prove to me why. Does he have an allergy, an illness, or a metabolism problem? That is a bit of a tangent but I do think we are our own best advocates and certainly the best advocates of our children who otherwise can't easily speak for themselves.

At any rate... we left with one of the best doctors in the country saying he is absolutely perfect health wise but that now we need to figure out what is going on in his tiny body and causing him not to grow. So forward we go. It kind of seems like we will be getting to know St. Louis Children's hospital a bit over the course of the rest of our tenure in Illinois. And I am okay with that. Dr. A is an intelligent, bright young doctor who really seems to love children and wants to help us figure out what is going on with our son. I will take frequent 3 hr drives for that :)