Wednesday, May 1, 2013

A New path

We had quite a LONG medical appointment this morning with endocrinology for the boys. In short (he,he) the doctor believes given everything in the boys history and previous lab work, that their bodies just can't utilize their growth hormones effectively. He says 80% of preemie kids will "catch up" or shoot up on their growth curves by age two. He says the rest usually never catch up without intervention.

For all those who ask: yes we own mirrors. The doctor knows our heights and our parents heights. We understand our children would have never touched six foot status. We are simply talking "normal" growing patterns. The average child this age grows on average three inches in a year, our boys haven't even grown an inch this year and because they started so much smaller than the average---and they have never shown a growth "spurt", it is unlikely that they can EVER "catch up". At four years old (tomorrow actually) they are the roughly the size of a 16-24 month old. 

He pulled up the boys growth curve line and we solemnly reviewed it. In four years they haven't budged a bit and have even fallen off their own line multiple times. He said this is really common for babies who had placenta problems during pregnancy which it was documented early on that ours had. No amount of food can "fix" that. I feel sad about this but also just a little bit vindicated (about the food stuff) at the same time. A feeding tube certainly wouldn't help this. All this high fat food diet hasn't budged either one taller a bit. We will take them for a full panel of blood work to verify nothing has changed and then push for insurance approval for growth hormone injections.

We went over the potential issues that are known about for using growth hormones in kids. Two particular concerns for Alex are shunt and scoliosis issues. In a very small percentage of kids, growth hormone injections could increase intracranial pressure, obviously HUGE shunt worry but he said this is rare and we will watch for signs. He said we can start on a lower dose and work up for this reason. The other concern is worsening of his scoliosis  It was the reason we didn't push forward with growth hormone a year and a half ago. well that and we met with a different endocrinologist at that time and we just thought Alex needed more time to grow. It wasn't as clear about the statistics on preemies and catch up growth.

So the scoliosis issue is that any growth spurt can really worsen existing scoliosis  Alex's is already in "watch" mode with ortho and has been for quite some time. However that doesn't mean we should ignore the fact that Alex just isn't growing in favor of being content that his scoliosis isn't changing. As endo explained, you wouldn't try to stunt another child's growth if they were growing normally, even if that child also had scoliosis. That made sense to me.

If the boys are unable to really process their growth hormones effectively, we should try to help with this if possible just as you would if they had a thyroid issue. Right now their bodies are closer to that of a MUCH younger child. He explained its more than just height, its bone structure/mass, growth of their organs (I kept thinking about their lung issues even though so much more improved this year than last, still requires breathing treatments through the night for every cold--simple growing of their bodies will also grow healthy lung tissue to take over the diseased ones).

We are NICU veterans. When the boys were born, we were thrust into a world where we quickly had to learn medical lingo if we were to grasp everything that was happening to and for our boys. We had lengthy discussions and signing consents being made to understand for every treatment benefit there was also a risk; risks that were known, and possibly risks down the road that could be learned later. For all the life saving miracles that happened for our boys their early months, there is also so much that is "guessed" by the medical professionals and much that is still unknown. When it comes to your childs health, their life, you want certainties, you want guarantees so its a very hard realization that even the specialists or the "experts" don't have all the answers. Those days were the hardest days of our lives but very powerful lessons learned. It was no surprise then when I asked this specialist if growth hormone will help OUR boys, given their history, health issues and current growth pattern and he said " there is no way to know for sure until we try".

We went into that appointment prepared that this would probably be recommended. We had researched and talked at length about pros and cons even before we heard all the pros and cons. I pray that our boys will get approved by insurance and have the chance to see if this can help them. I pray that if they do get approved that they will have the most benefit with the least amount of risk and side effects. At the end of the day, its a leap of faith. But then again, so are most of the wonderful beautiful things in life!


liz kulp said...

i'm glad you have a possible answer/ action... keep us posted :)

Sue Rissberger said...

I love the picture at the end. I think it really captures everything you wrote (moving forward/helping each other/strong support systems), and what every parent wants for their children, happiness.

cfallone said...

Had many of those discussions and can totally relate to your worries of the pros and cons. I am glad you have affirmation that this is the right direction for the boys. Watch out, those boys might tower over you someday :) Can't wait to get together!!!!!