My son just started Nutropin. We see an Endo at Yale, and I really think having the experience and staff at Yale is helping to make the ordeal easier. The endo prescribed the growth hormone (Nutropin by Genentech - I don’t know why this drug by this manufacturer).  There seems to be a set procedure how to go about prescribing growth hormone. The doc prescribes the meds. Submits it to insurance and medical mail-order (if you have that). It is denied (apparently most insurance companies do not allow for growth hormone because of cost, among other factors). The MANUFACTURER gets involved too. Genentech has a division called Single Point Of Contact who helps to coordinate care. Genentech (manufacturer) mailed me a very slick mini-looseleaf binder with a daily diary to keep track of when I give the injection to my son, at what time of day, etc. It also goes into how each shot is an opportunity, and don’t miss that opportunity to give the shot because you really have such a small window in time to grow, and a missed shot is a missed opportunity. My doc said if you go on vacation, the shots stop. If the kids go to camp for 8 weeks, they end up taking the shots to camp. So the doctors are more liberal than the manufacturere (surprise). Single Point of Contact (suppport branch of Genentech) called me to introduce themselves (after I got the mini loose leaf binder). They coordinated the shipment of meds (a one time/one month free trial welcome package), which I had sent to my office. I had to sign for the meds, they don’t leave it at the door. I had to run home from work and put the meds in the fridge. In the 2 boxes where a Coleman brand cooler with Nutropin labeled on the top. 4 mini ice pack bottles that you can find at the market. An small ice bag that gets put into a corrugated cardboard box. that corrugated box goes into the cooler. Because these meds are precious, and have to stay at a certain temperature. I also received the injector. Then I got a call from a business coordinator(?) who arranged to have a nurse come to my house to do injection training. The nurse came over on a late Saturday afternoon and spent about an hour and a half with my son and I, teaching us how to do an injection with this space-aged injector. Then I got a call from the Access to Care Foundation (another branch of Genentech). When insurance is denied, even after the MANUFACTURER appeals that decision, the MANUFACTURER has it’s own foundation that makes the meds available to families based on income (can you believe it???).  And that is where I am today. Last week I submitted my 2006 income tax return (including all schedules), filled out an application and faxed it to the Access to Care Foundation. I have no idea how this is going to turn out. But I have my hopes up, because they went through this giant rigamerole to get my son started, I can’t imagine that they are going to yank him off his meds after one month! And actually, I am pretty impressed. Being the business person that I am, I cannot believe how much time and money Genentech has invested in drawing us in. We also received an fairly simple growth chart to hang on the wall to keep track of my son’s height. And if the Access To Care Foundation comes through, and gets me the meds at a cost I can afford (please, afford? My parents support me and my 3 kids more than I like to admit), I will forever be indebted to Genentech. Which I don’t think would be such a bad thing. If I don’t do this for my son now, it is just going to be that much tougher if he never grows past 5’1".

On the flip side, I didn’t tell my son about the growth hormone until it was a done deal. There is such a lag time between prescribing it and actually getting it, I didn’t want to stress my kid. Cause then he would make himself sick (lovely CAH), and I would have to stress-dose him with the cheap medicine (dexamethasone). Now my son is angry that he has to take the shot 6 days per week. I haven’t told him that this will have to go on for years. He says he wants to stop before a year is done. He doesn’t care if he isn’t taller than 5’ (he is 10). He won’t rotate spots where to give himself (yup, he does it, and I sit with him) a shot, as he is scared to. Tonight I will make sure it goes in his arm as his legs are so sore already. And he has also started being angry at all the meds he is on, and gives me a bit of trouble with taking them. He feels like I treat him like an "old man". We are going to get through all of this. But it is tough.

I have a tendency to be really wordy (ha ha), but since this is all so new to me, and I am in awe of it myself, I wanted to share the whole story. Of course there is some anecdotal stuff, but my hands are tired from typing! Good luck.