HORMONE STIMULATION TEST

The hormone stimulation test was a pain.  It lasted for about three hours once we got started.  The process to get started involved placing an IV, which was time consuming and difficult because Carter's veins are really hard to access.  I learned later from the nurse that they see that a lot in kids with GHD.  

Once they got the IV in place, he received the first of two medicines to stimulate his pituitary gland to produce growth hormones.  The nurse then came back every 30 minutes to take blood draws that would then be tested for levels of growth hormone.  There were three blood draws taken after the first medicine.

The second medicine used to stimulate the gland was taken orally and Carter was required to lay flat on his back during the test. Again, blood draws were taken every 30 minutes.  During this time, Carter became very sick to his stomach and eventually threw up.  For the rest of the test he felt terrible, but after about an hour or so he was much better.  

The two medicines Carter was given were Cortrosyn and Arginine. 

During the entire process they also tested his sugar and cortisol levels, which were both normal.

There's more detailed information on the Growth Hormone Stimulation test here.  

DECISION MAKING TIME . . . . YO!

My initial reaction was NO WAY!  How stupid do you think we are?(awwww she said the "S" word)

kid + brain tumors + growth hormone = really BIG tumors!

I had always heard whispers in the NF community that you NEVER give a child with NF growth hormones.  That would be asking for trouble.  I can't really pinpoint where I heard that; from a doctor?, another parent?, read it somewhere?  I don't know.  Not sure I can base my decision on a whisper from an unknown source.

So we asked ourselves, what if we do nothing?  What if we just let him be short?  I mean, there are lots of short men that are happy and successful.  Right?  Right.  Then comes the big "but".

Without growth hormone, as Carter gets older, his heart, lungs and bones will be affected.  Another risk of leaving this untreated, is the risk of Diabetes.  So, unfortunately it's not as simple as short or tall.  It goes beyond that, to the health and well being and possibly the life expectancy of our sweet boy.

Granted, there are bigger decisions than this to be made in life, but when you're dealing with your child, it's big no matter what.  First, when we talk about growth hormone therapy, we're talking about daily injections, given at home.  Scary.  Second, and most worrisome, the math equation above!  We certainly don't want to cause tumor growth. We've spent the past 7 years trying to prevent it!

  

So, where do you go when it's time to make a decision? I don't know about you, but I pray.  And that's exactly what I did.  I prayed that God would give me a neon sign.  "Lord, just make it so obvious to us that this is the right direction and the right time."  And, well, peeking levels at 2.7 when the normal is above 10 seemed like a pretty bright sign to me.  Not to mention the overall excitement and peace I have about getting started.  Could this be my neon sign?  I don't know for sure, but I can tell you that I know who's in control and I know that He will lead.  In the mean time, I'm just going to be excited! 

For those that have known us and Carter for the long haul, you know we have struggled with a lot of things beyond medical.  We've had many behavioral mountains to climb and the climbing has been painfully slow.  Knowing that there could be a reason behind these problems we've had, knowing that it's possible we have finally found an answer to a significant piece of the puzzle and the hope that has been refreshed in us, is exciting!  

Carter is almost 8 years old, and though he's very intelligent (scary smart), he behaves like a 4 year old.  His maturity level is, in a lot of ways, below our 4 year old girls' maturity level.  

For the past few years, his birthdays have been hard.  Seeing him "age" but not grow, physically or mentally, is sad and I find myself dreading his birthday.  The potential that we see in him is so great, but the realities that we can't seem to overcome, have been discouraging.  

This new adventure gives us great hope and we are waiting expectantly to see the great things that God will do through Carter and these new experiences.   

WE INTERRUPT THE REGULARLY SCHEDULED PROGRAM FOR AN INSURANCE UPDATE:

Surprise!!! Insurance denied the claim for the doctor prescribed growth hormone injections.  Honestly, we are not surprised because the nurse told us this would happen.  The doctor has already sent in the appeal letter, so we continue to wait for a few more days or so.  

We are prepared to appeal as many times as we need and I'm already working on my "This mommy ain't taken NO for an answer" letter if that's what needs to happen.

Smooth . . . . praying for smooth.

TESTING, TESTING, TESTING 1, 2, 3 . . . . . . 4 . . . . 5

About a year and a half ago we began seeing a new endocrinologist at Children's Hospital in Birmingham, Alabama.  I voiced my concern about Carter's growth at that time.  My concern stemmed from the fact that Carter could still fit into shoes and clothing I had bought for him two or three years prior.

The testing started right away with simple blood work.  Ouch!  Everything came back within the normal range, but on the low end.  This testing was repeated two more times, six months apart and each time everything was within the normal range, but on the low end.  Along with the last round of blood work we also had a bone age test done.  This is just a simple xray of the hand that they use to determine if the bone growth matches the age of the child.  Carter's came back normal.

At his most recent visit to the Endocrinologist Carter's actual growth rate was discussed and his doctor was not happy that he was in the bottom 3% on the chart and that his growth rate over the past year was less than 2 inches.  He suggested the more extensive Growth Hormone Stimulation Test.

At this point, I was on the fence.  I still thought his growth was more hereditary than anything.  I mean all the testing we had already done had come back normal. Right?  So, why the need for this new, more complicated test?

Then it happened . . . . I started researching online about GHD, the symptoms and causes.  What I found was almost a point by point description of Carter.  It was then that I realized we needed to have this testing.

The testing itself was a bit of a pain. I will describe it in detail in another post.

Within just a few hours after having the test we received a call from his nurse.  Her exact words were "Carter failed both tests BIG TIME!"  His pituitary gland is not functioning properly.  The GH levels should be above 10 to be considered normal.  Below 10 to be a good candidate for replacement therapy.  Carter's levels peeked at 2.7.

So, this leaves us with a pretty significant decision to make.  Replace hormones? or Do nothing?

NF IS IN THE HOUSE!

I think starting with a little background on Carter would be a good idea . . . but I promise to make it short. No pun intended.  

Carter was born with a genetic disorder called NF1 (neurofibromatosis).  You can find out more about NF by visiting the Children's Tumor Foundation website.  The basics though are that NF can cause tumors to grow on nerve endings.  The tumors are generally benign but can cause a great deal of pain and depending on the location can be life threatening.  When he was diagnosed at 15 months with a Bi-lateral Optic Nerve and Chiasm tumor he took Vincristine and Carboplatin (chemotherapy) weekly for 21 months.  Fortunately, since ending treatment, everything has been stable.  There are a few other little bumps we've had along the way and if you're interested and have nothing better to do, you can visit his Caringbridge page for a complete chronicle of the journey.

Now, that wasn't so bad.  Was it?

Wait!  There's more . . . . 

Carter was born at a normal weight. (well, sort of. 9 lbs 9 ozs, 22 1/4 inches long. I didn't think that was so normal.)  He grew normally as a baby and into toddlerhood.  Looking back, at around the age of three, he seemed to plateau.  Yes, he grew a little each year, but the rate was definitely not within normal range and he began falling lower and lower on the growth chart.  The falling was gradual enough that everyone felt comfortable "watching and waiting". (another reality of NF) 

That's where we've been for the past few years.  Until recently.  Which brings me to this blog.  My goal is to chronicle our experiences with growth hormone replacement as it relates to Carter's NF and also our general experiences with the entire process.  Over the next week or so I will be talking about the process we have gone through up until this point.  We are still awaiting insurance approval for the medication.  Once he begins, I will use this blog to journal his progress and any side effects he may experience.

I would also love to connect with other NF parents whose children are going through growth issues.