Friday, September 23, 2011

The Beginning of our Growth Hormone Journey

I recall being told back in the NICU that there are two times a preemie has a chance to catch up in growth.  Before the age of three and at puberty and that about 10% of preemies may need growth hormones.

Well here we are, no where near puberty but well past age of three. My son is off the charts. He is 10 years old and his bone age around 3 years behind, and size of a six or seven year old.

So, we are now entering an entirely different journey, the human growth hormone journey.

 I'm told that bone age behind is good, it he has more catchup growth time. 

We have had blood work to check hormone levels,thyroid etc.. had an MRI of pituitary gland, even saw genetics for any metabolic disorders. All normal. We have even seen genetics.  Their finding was a partial chromosome 18 where there aren't much studies done on that so inconclusive.

At this point it looks like my sons growth delays have more to do with his prematurity, the fact that he was IUGR, he had respiratory problems, he was on prednisolone (systemic steroid) for two years and of course I'm no giant so a genetics play a part in all this. This all leads to " Small for Gestational Age".

What have I learned so far about Growth Hormones so far?  Its a daily injection. There are several different injection type injection Options. I believe we will start on the Miniquick.

Our endocrinologist told us that Preemies were IUGR at birth apparently respond well in the first year.

The side effects we were told about consist of; severe headaches that will require hospitalization, bone slips (where the bone dislocated from joint requiring surgery) are rare about 1 in 700 for both, scoliosis (curving of the spine), and two new studies that haven't been confirmed cancer risks and cardiovascular risk.

We were also told, since my son had severe respiratory issues that we needed clearance his pulmonologist, apparently some children who have had previous breathing problems can have a set back. Nice.

Well....doesn't sound inviting does it? We are still in the "deciding" part of this process....stay tuned for updates...

Update: 2/13/17...We had 3 endocrinology doctor changes since this post.  We came off growth hormones over a year ago.  At 4"10 he was we were told he was at the end of his growth.  He went through puberty very quick.  His bone age which was one behind was advance two years.  We are told he probably won't grow much bigger then he is now.  I'm hoping thats not true.  Docs have been wrong before.  Time will tell..see updated post here...


Saturday, September 17, 2011

Article: Premature baby brains can't tell pain from touch

I don't know about your former preemie but mine has a high tolerance level to pain.

He can fall scratch up his entire leg pretty good and keep on running as if nothing has happened.  He can come home from school with a big bruise and/or bump on his head and it won't phase him.

I remember his second day of kindergarten. I got a call from the teacher that my son tripped over a carpet and got a cut on his forehead. He needed stitches.

As I drove to go pick him up I thought he would be so traumatized. Nope...not one bit. When I got there I think the teacher was more distraught than he was! He was just sitting looking at books ever so calmly as the nurse held the cloth to his head to stop the bleeding.

Here is an article I wanted to share about Premature baby brains can't tell pain from touch.

I can't help but wonder if this study would also apply to our older preemies.  Seems like it with my son.


Friday, September 16, 2011

Article: Comments And The Impact on Preemie Mothers

I came across a report today from a forum called Inspire.com.  They have a preemie forum that I follow every from time to time.

The Report is about "Comments and the Impact on Preemie Mothers".

It brought back memories of the comments I used to get over and over again. I'm sure you have heard this one... "I don't know how you do it".

The most recent comment I got was... "Do have anyone to talk to because it must get lonely?"  hmmm...

I used to get so frustrated. However,  it didn't take me long to realize that you simply can't "get it" until you live it.  People are NOT trying to be mean or inconsiderate. They really are trying to be sincere and trying to understand.  

So, for those of you who have never experienced having a preemie or special needs child, thank you for trying to understand.

What can say or do? Well, simple...sometimes mom or dad just needs you to sit with them and sometimes a simple "this really sucks" will make a huge impact.

I hope you enjoy this report as much as I did.

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