Wednesday, July 31, 2013

We're approved!

That happened much faster than expected. I received a call from Children's Hospital pharmacy saying that Jax's hGH has been approved by insurance and that I had to schedule our training appointment with our Endocrinologist-nurse to set up a pick up time/date. We weren't expecting this to all go through until the end of August, with training some time in September. Given the sky-high cost of this treatment plan, we were expecting some red tape in the process, but that didn't happen!

Between the nurse's vacation next week and Jay's work schedule, we decided on August 13 for the training and pick up. I'm also waiting on our 'welcome package' from the drug manufacturer which will have supplies and the backpack-cooler I'll need to have cold and ready to go for pick up day. Yup, we've got another 'backpack' for Jax's supplies.

I did a lot more reading on the subject lately, and I feel a lot better about it. I was never quite understanding the difference between GH (growth hormone) and steroids, and now I know there is QUITE a difference.

This is the company providing Jax's specific GH. And this is their page describing the use of the product for Jax's specific condition - SGA.

I've had a few messages asking me how a child is considered for this treatment or if a parent should be talking with their child's pediatrician about it. I will first start off by saying that a Pediatric Endocrinologist has to be referred from your child's pediatrician or another specialist that the child may be seeing. They are not in the business of making tall people, or really even what we all think as 'average' height. Average to the general population is much taller than in the Endocrinology world.

Our process started one year ago when the boys had their 4 yr old physicals. They were both still exhibiting some developmental delays along with being very small. One child was on the 5ish% of the scale and the other not on it at all. Our pediatrician said that she likes to see all 'preemie-related' issues to resolve by this age. She sent us to a Pediatric Genetics Specialist to just make sure there wasn't something bigger happening that we were missing. We were also sent to a Child Development Center to make sure we had all our bases covered for the developmental delays (this is where their speech 'delay' was categorized as a Speech Apraxia disorder).
This was a long year of appointments.

The good news was that the boy's genetic testing came back clear, GREAT! But the Genetics Specialist said they both had 'short/small stature' meaning they needed to see a Pediatric Endocrinologist. Given the fact that neither my husband or I are considered 'short' in the Endo-world or even the regular world, the boys were definitely much shorter than expected.

At this time, they had their growth hormones and thyroids tested (blood tests), their bone age tested (X-Rays) and the Genetics testing came in handy to show there were no specific disorders at play. They were both Dx'd with SGA, meaning they were smaller than they were supposed to be at birth, and they never really caught up. We know their blood flow was greatly compromised during my pregnancy, so it was the mono/mono twinning that stunted them. It affected Jax much more substantially. Since Jax has suffered from extreme GI issues his whole life, his growth has been stunted even further, so here we are.

If you're worried about your child's size, it would most likely have been discussed at your child's yearly physicals with your pediatrician by the age of 4. But, as most of you know, the parent sometimes needs to speak up if they feel a certain area of care isn't getting enough attention. Neither Jason or I had to  push the subject at all since it was all recommended to us. When you see our boys next to other children their age, Brady looks like a very small peanut, but Jax just looks 2 years younger. Jason and I were both very small children, so a child the size of Brady doesn't surprise us too much! He's a little bit shorter than expected, but we at least see 'growth' from him each year. He actually grows out of his pants one year at a time, does that make sense? Jax still wears 3T pants, and I'm shopping for 5T's for Brady this fall (to roll up of course) but that's a difference I tend to notice.

At age 5, Jax has the height of 37" (26ish lbs). I just read that GH can help with motor skills/coordination and hunger. We're really interested to see if this helps Jax in departments other than just height.


cat said...

Sounding very positive!

pyjammy pam said...

glad the whole process is going fairly smoothly!

and my boys still wear 3T pants in some brands. stumpy little legs they have. they could share with jax! :)

Michele said...

How exciting! :)

Matt & Shana said...

Good news! I was talking with the guy I work with who's son took it from ~10 years and he was explaining the cost - yowzers! He also mentioned that some months you may have a little left over and if you plan it out you will have some spare for where insurance gets behind or deductibles haven't kicked in etc. He said his wife is available to talk if you want to know how they thought it worked and now their son is 19 so it would be a bit of a look ahead for you :)