Archive for December, 2010

Growth Hormone

I can’t remember what I’ve posted about this and what I haven’t. So here goes the whole story again because it’s on my mind. For a while now I’ve been worried about Gabe’s weight. When we switched over to the new pediatrician two years ago (was it really that long ago??) they started watching his weight more closely. From two and a half to three he didn’t gain any weight so we started monitoring it more. Last fall (2009) we saw a pediatric GI doctor to rule out any issues there. At first she was all concerned that Gabe had celiac. After the blood work was normal she made us test for absorption issues and that was all normal so she said it wasn’t a GI issue and to follow up with the pediatrician and nephrologist. In December of 2009 I talked to our nephrologist about it and growth hormone and he felt Gabe was way too young but did suggest to see an endocrinologist and gave me a name. We didn’t get an appointment until May of this year. Did you know that practically every pediatric endocrinologist is booked solid for months and months. I actually called a different one about two weeks ago and his first available appointment is in August of 2011. Is that the most insane thing you have ever heard? I thought I had been warped into another country with socialized medicine but realized I live in New York and have good health insurance! Anyway, I’m getting sidetracked. In May we saw this endocrinologist who was not my favorite doctor to say the least. After waiting over an hour she told me to feed Gabe foods like cheetos and McDonalds to fatten him up and then he would start growing. A few weeks after that we participated in the study at the NIH and found out he is deficient in something called the IGF-1 hormone which is a hormone that the growth hormone produces. In August we saw our nephrologist again and went over all of the results from the NIH and talked about the bad endo he sent me too. He said he didn’t have another name for me and to let him know if I found one! Hmmm……. At the National PKD Convention in San Diego the two gurus in the field said Gabe seems like the perfect candidate for growth hormone. He has a chronic kidney disease but has good kidney function but he’s low on the charts. So after all of that I started asking around and got an appointment with a pediatric endocrinologist my pediatrician recommended. I called in August and had the first available in October. I called someone else at the same time and they were booking in January! So we saw this doctor in October and at the time I thought I liked her. Although her nurse was what I would call a total beotch I didn’t have to wait and the doctor spent a lot of time with us and seemed thorough. Gabe was under the 5th percentile in height and weight. She gave me a prescription to do a ton of blood work and to do a bone age scan of his hand to give us a better estimate of his adult height. At the appointment she said based on his current curve on the charts he would be about 5 feet 6 inches as an adult. She said after she got the results and talked to our neph she would get back to me. Well, four weeks later I left her two messages and she finally called me back and hadn’t even talked to the neph yet. She did say all of the blood work was normal with the IGF-1 being in the low limits of normal. She said the bone scan gave Gabe an age of 5 and you actually want your scan to have a younger age than you are. She again called me the next week and said she finally talked to our neph. She said they both agree that Gabe should do growth hormones and they both agreed that she didn’t need to prescribe them that the neph could. She then said that he said he had told me that at our last appointment. Now really…. do they all think I am a complete idiot. I have been talking about growth hormones for over a year. Would I really be running myself and Gabe ragged all over the place to different doctors and doing different blood work and scans… wasting our time and our money if our neph had just told me he would do it. Come on! So to say the very least I was really pissed off after that conversation. I emailed the neph who said yes make an appointment and bring Gabe in and we will start the process. Argh. So that is the long and not short of it all! We don’t have an appointment with the nephrologist until the end of the month so we will see how that goes!

I read recently in a magazine that in your lifetime you will see 19 doctors. 19 doctors. Can you imagine? I think I have actually taken the boys to over 19 doctors this year alone. Let’s see…. Gabe has been to one urologist, is going to a second urologist next week because sadly the first one passed away, has seen 2 endocrinologists, the pediatrician, the hepatologist and geneticist at the NIH, the nephrologist, and ENT, and will see the pulmonologist in a few weeks. So that is 10 for Gabe for this year. Max has seen the pediatrician, the nephrologist, the pulmonologist, the hepatologist, and the geneticist this year. So that is only 5 for Max. So only 15 for us for this year! Wow! I think I should start counting every year how many different doctors we see.


December 3, 2010 at 11:31 pm 1 comment

December 2010
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