The elusive growth hormone

I know I have said this before and I know I will continue to stress about this but for the last three years or so I have complained that I felt Gabe wasn’t growing like he should be. He eats well but barely gains weight and grows height wise at a very slow rate. We are now onto our fourth endocrinologist who we have been seeing now for almost a year.  We saw him today after 3 months and he asked if I thought Gabe had grown any and I said no. So after measuring him and weighing him he agreed that Gabe has not grown since our last appointment and has now totally dropped off of the charts in both height and weight. But yet he still does not want to start growth hormone. He wants us to wait until our appointment on 2/25 to do the 3 hour growth hormone stimulating test. Then he wants to wait for 2 more weeks for me to call him and to discuss those results. Then we will go from there. But even if he does decide at that point who knows how long it will take him to apply to our insurance company and for our insurance company to approve it. I am beyond frustrated at this point and do not know where to go from here. The thing that irritates me is I know so many people who have their child on growth hormone for other reasons but did not have to fight like this. I also know many people with children with a kidney disease who have or had their child on growth hormone and also didn’t need to jump through hoops like this. What’s even more frustrating is that Gabe is 7 and still wears some size 4 clothes and weighs 37 lbs!!! And is only 42 inches.  This is I think more than negative 2 on the growth chart!!!!! He is 52% below the “average” 7 year old!!!!!!  That is just insane to me.

Besides that the endocrinologist seems to now be more concerned about Max and his growth issues so I need to do some follow up with him. And we have already been down to the city for 5 appointments since the beginning of the year and need to go in a few weeks for a sonogram for both boys and for Gabe’s 3 hour growth hormone stim test. Besides that the nephrologist wants me to take Max to a pulmonologist and Gabe needs to see an ENT. And I need to follow up with the hematologist for Gabe and the GI for Max! And I’m having half my thyroid removed in March!!! And we have already spent $1000 on medication this year and over $300 on copays!!!! That isn’t even including our deductibles!!! Wow and its only the fifth of February!