Thursday, December 20, 2012

Endocrine Appointment

Snow day!
But we were all still up early and out the door (it's just been rain so far here while we wait for this impending blizzard in the afternoon) and off to the boy's Endocrinologist appointment at Childrens Hospital.
It was a good and informative meeting. They did measurements on the boys, and reviewed all the test results from the Genetics Specialist. When they measure height of the boys there, they actually stretch them out for a 'true height', so each boy got an extra half inch than they normally do when measured. (Brady was 39.5" and Jax 37.5") but I was surprised that they weighed the boys with all their clothes on (Brady 30.5lbs and Jax 25.7lbs) especially given that they had jeans, shirts and sweaters on, but maybe ounces only matter when at the Feeding Clinic!

After the Endocrinologist did some math (based on our heights, puberty ages etc) and made some charts, she said that the boy's "genetic potential for height" is 5'7" - 6'-3". Sounds great, right? The doc also said the boys are actually 'ON' the charts. Brady is in the 12% for height and something like 5% for weight and Jax is 3% height but not on the chart for weight.
Here is the math, science and overall Endocrine part of all these figures...
Neither boy has had growth to this point to reach their genetic potential. In other words, neither boy is growing at a pace to hit 5'7" as an adult (the shortest of their genetic potential). Their growth hormones and thyroid tests all came back normal (low end, but still in the range), and their bone scans came back saying their body thinks they are 4 years old, so this tells the doctor that their growth was stunted in utero (like the Developmental Pediatrician said) and the boys may never 'catch up' to their potential.

They are both currently candidates for Human Growth Hormone medication given their rate of growth and their genetic potential. But here's the plan... we're going to wait about 7 months and take a look at how they're growing this year, and see if their rate of growth speeds up a little bit now that they're healthier (well, Brady has always been decently healthy, so we'll see) and then we will see if the statistics of their height potential go up.
We all agreed that healthy and short is just fine with us, but obviously if we see the boys will not even get to a height that will give them opportunities at a normal social life, then of course we'll consider the hormone treatments. I asked what height potential Jax is currently at and the doc just shook her head saying its not currently anywhere close to the minimum of his genetic potential. Oy.

Jason had a long talk with the doctor about the hormone treatments since he had a pretty bad opinion of the drugs when he was a personal trainer. The doctor explained that they are two very different scenarios and side affects. An adult taking and abusing the drug to enhance their athletic performance will have extremely negative affects on their body, organs and temperament. A child who is currently growing (which is the biggest factor - a growing person vs an adult) has a doctor monitoring every step of the way, shouldn't have any of the negative affects. One good side affect that may actually be a positive is weight gain and hunger - that would only help Jax with his feeding disorder battle.

So, this is all something to consider, and we were sent home with a lot of information about it all. We will see if the boys show 'catch up growth' over the next 7-12 months and weigh out the options. There is no guarantee that it would work and the purpose would solely be getting the boys to a 'normal short' rather than an 'extremely short'. The doctor said it's very hard to get insurance to cover the medication and of course, the costs are sky high, but Jax actually hits every requirement right now (which I looked up, and it means he's not even on pace to be 5'3"). I guess we'll just focus on their health and development and put this on the back burner until their appointment in July. I can honestly say that if this were the one obstacle for the boys to deal with, it may not even be something we'd consider. But who knows, they may show some catch up growth to prove they'll just be 'really short', which we'd take!

In the meantime, it will be cookie-decorating day since the kids are home from school, and I try to squeeze work in during their nap... wish me luck!

The boys having fun with cookie cutters.


Brady was REALLY into it!

Hmm, our gingerbread men look more like flowers...

The boys made us these floor mats at school as Christmas gifts. They did this with their feet and hands dipped in paint - too cute!

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