Tuesday, June 10, 2008

Rollercoaster - Part 2

Originally this was part of yesterday's post, but it was just too darn long so I separated it out.

I've posted about Son #1's growth issues in the past. Here are some posts you can visit if you want to get up to speed:
Son #1 gained almost 5 pounds since starting the "battery acid" medicine, as he called it, back in November. It is designed to stimulate appetite, but it tastes awful. I thought Son #1 was exaggerating until one day, on a lark, I dipped the tip of my finger in the medicine and took a taste....just to see what the fuss was about. OH. MY. GOSH. It was terrible. Granted, I've never attempted to siphon gasoline and failed, but I can only imagine that this is what it would taste like. ICK!. The foul taste stayed with me for hours! Son #1 is a bigger man than I give him credit for. (and this stuff is supposed to *stimulate* appetite???)

He had a follow up appt. with the endocrinologist at the end of May. Although Son #1 gained weight (yay!), when you factor in the height increase (1/2 in. in 6 mos), it ends up equating to a net loss. Sigh.

Doc recommended a Growth Hormone Stimulation Test, which we took on June 3rd. Son #1 had to start fasting at 9pm the night prior. We drove to the hospital about 35 miles away, checked in and Son #1 was led to the Pediatric Intensive Care Unit (PICU). Sounds much scarier that it is. It turns out that - fortunately - the PICU is not a busy department and therefore can conduct the 3+ hour hormone stimulation test properly, usually without interruption. (Doc said the hospital closest to our house is "too busy" and if the bloodwork isn't drawn exactly in the right increments, it negates the entire test).

They insert a Hep-Lock in Son #1's arm (an IV port). They draw baseline bloodwork. They give Son #1 Clonadine (tablets) and Glucagon (shot in the tookus) to 'stimulate' an insulin/growth hormone response.

Thirty minutes after the meds, they draw blood. Sixty minutes after meds, they draw blood, Ninety minutes after meds, they draw blood. One hundred twenty minutes after meds, Son #1 had to pee, gets nauseous and weak, they draw more blood. He finally dozes. One hundred eighty minutes after meds, they draw the last round of bloodwork.

Now I understand what I mean when they say that blood must be drawn at exactly the precise intervals or else the entire test is a bust!

They feed us - an unexpected treat (I fully expected to have to stop for food on the way home). Son #1 ate cheese pizza and drank Gatorade ... a must before Nurse Nancy would remove the IV port from Son #1's arm.

The test results will be forwarded to Son #1's endocrinologist in 3 to 4 weeks. I'm not sure what to make of all this. I've been doing research, off and on, for a while now. Information overload. On one hand, I'm 5' 1" and I don't feel 'shortness' is a condition that necessarily needs to be cured. Hello, Michael J. Fox (5'4") and Al Pacino (barely 5'6" if I had to guess).

I remember watching a special on 20/20 on TV a few years ago about teens/young adults who had growth hormone injections. How much it hurt, how much it cost. I remember Son #1 who must've been about 8 at the time saying he didn't want any of that. He's happy the way he is. The way God made him. That's a pretty compelling argument.

But there's a flip side. Many studies have shown that children (and adults) who do not produce enough growth hormone (you don't stop needing the growth hormone once you've reached adulthood), are at increased risk for: 1) obesity - altho' this is unlikely to be an issue for Son #1, 2) osteoporosis - which runs in my family, and 3) early onset coronary artery disease - Dear Hubby had stents at 34 and triple bypass at 36.

So it's not really a matter of curing 'shortness'. Unfortunately, many insurance companies consider growth hormone therapy a 'vanity' treatment. Test results should be in by the end of the month. Stay tuned....


Tracey said...

Sigh... tricky stuff, this parenting. Let us know how it turns out.

Hope they have a great camping trip!

Shionge said...

Thanks for sharing Elle, your son is so brave to endure all these tests and I wish him well.

Lisa R said...
This comment has been removed by the author.
Elle*Bee said...

Thanks, tracey, I will post updates. He's such a tiny guy, which in and of itself isn't a bad thing. The increased risk of cardio disease has me concerned, given Dear Hubby's history (and his family's). But...one day at a time.

Thank you, too, shionge for the supportive words. :-)

(the previous deleted comment was mine - identical to this one, but I was logged in under my other ID)