Tuesday, February 23, 2016

At the end of the Growth Hormone Journey...our experience

This is a followup posts from January 2011 The Beginning of our Growth Hormone Journey . February 2012 One Month on Growth Hormones  and of course November 2012 One Year on Growth Hormones

Our son has been on growth hormones (GH) since around the age of 10 and we have recently hit the end of our Growth Hormone Journey.  

Thinking back and after talking to several moms who's child has been on GH, I feel like we had a weird experience. 

Our experience went something like this,  

When we first started at age 10 our son's bone age around 3 years delayed.  
Our son had a very good response in beginning of  this journey.  His doctors were thrilled...when he started hitting puberty (11-12 to me this seemed too early, but I was assured it was not) ..

We had his bone age done yearly. About a year into the treatment his bone age seemed to be catching up.  By age 11 he was one year ahead peers! Meaning he went from a 3 years delayed to one year advanced!

At age 12 his bone age had advanced significantly further, his skeleton now was similar to that of a 15 year old thus leaving him not too much room to grow and of course his doctor was baffled (hmm...sound familiar?).... 

These were our options we discussed with the doctors.
1. Keep the current status  quo on growth hormones until hes done growing and let things progress as they would.
2. introduce an aromatase inhibitor (i.e. letrozole or anastrozole) that would prevent the conversion of testosterone to estrogen (estrogen is the hormone thought to be responsible for fusing the growth plates) thereby allowing the bone age to stay "frozen" at 15, and giving him more time to grow".

Now, keep in mind Aromatase inhibition is NOT standard of care, it is used  breast cancer patients and has NOT been approved by the FDA. It is recommended to only be used in research settings. There have been only few studies using it for growth purposes with limited success, but again, in very few studies.

Risks? Aromatase inhibition will raise the Testosterone levels...and may be associated with some increased acne, blood counts, liver enzyme elevation, cholesterol, and potentially aggression. Many doctors have had mixed results. I was told that all the boys on it got significantly worse acne and a deeper voice. 

Of course just like everything else in our journey doctors had not ever used this it in a patient with Autism and baseline behavioral difficulties..

Our choice? We opted NOT to to the Aromatase inhibation for numerous reasons, the  other thing about the Aromatas Inhibitor, doctor's know long term effects of using this drug on children.... 

This was all, last year, so...fast forward now age 13.5, our sons bone age advanced even further to age 16.5!! 

As of this past week we have decided to stop the growth hormone therapy, he is growing now in cm's not inches and at a snails pace and because he has reached the end of his growth potential and keeping him on it could be dangerous and cause more issues which he doesn't need.  End result as of NOW..predicted height for our son is about 5ft.  IF we are lucky. I instinctively do not think he will even reach 5ft. As with anything else in our journey, it is what it is...

We also have a followup with Genetics.  The testing we did at the beginning of our journey is being re-evaluated because i'm told 4 years in Genetics is light years.  That's another post for another time when I get results. (***results of gentics below).

So... there you have it, our personal experience with Growth Hormones...would love to hear any feedback or stories anyone else out there may have..

***4/16 update: Genetics testing showed that my son had a partial extra chromosone 17 so they tested me and my husband.  I also have it.  They don't quite know what that is they have never seen it (of course) but since I tested positive for it (and I'm ok) I am told its nothing to worry about. 
Pley - Rent Preschool toys

1 comment:

  1. For those who didn't knew. An Autism is a neurodevelopmental disorder. It's not too common so most of the people out there still don't know much about it. But there are definately people suffering from it nontheless.