LK's Endocrinologist Appointment

Lily Kay and Abigail and I headed down to our neighboring state to the south, to have our 4-month visit with the endocrinologist regarding LK’s Congenital Adrenal Hyperplasia (CAH). 

Her numbers from her most recent blood draw look good.  No need for changing the dosages on her two medicines (one she takes three times daily, the other she takes twice a day). 

But that is where the good news ended.


LK hasn’t been growing.  Like…at all.  Her “growth velocity” has been 50% of what it should be for over a year.  And honestly, I’m surprised it is even there, because the dot the doc showed me on the growth chart hasn’t moved in…forever.  The endocrinologist has mentioned briefly at the last few appointments that we may need to think about growth hormones for LK. 

She mentioned growth hormone again at this appointment…but not-so-briefly this time. 

LK came home at almost 4 being much taller than normal for her age.  But the medicine she is on for CAH decreases the body’s own growth hormone.  And in some cases it affects the growth so much that kids with CAH need to take growth hormone.  

LK's lack of growth in NO way indicates that she doesn't eat enough.
She eats more than anyone else in our family...including Jas and I.

Besides being a daily shot (which LK would be sure to just love…or not), the growth hormone has side effects, of course.  Pseudo Tumor Syndrome.  Sounds fun, no?  Brain swelling and headaches that normally would be symptoms of a tumor.  OR – here is another fun one – a problem with the leg/hip bones that can only be corrected with surgery. 

So...we’re not exactly chomping at the bit for LK to start on growth hormones. 

There is a time window where growth hormones can be used/effective.  When the growth plates “close”, the window is gone.  Her growth plates will likely close when LK’s bone age is about 13.  The last time she had a Bone Age study, LK’s bone age was 10 years even (she'd just turned 8 years old).  It will be time for another bone age study at LK’s next appointment in four months. 

The doctor said we could wait and see how things are at LK's next appt in four months.  SO…..we’re praying that LK starts shooting up like a weed before that next appointment!

It is also getting to be time for LK’s subcutaneous implant to be changed out again.  The implant holds her precocious puberty (that started at 4 y.o.) at bay….so, YAY for implants!  She’ll have the surgical procedure to take out the old one and implant a new one pretty soon…likely by the end of the year. 

Lily Kay handles all of this like a champ.  I wish her mama did as well.  I end up on the same page as the Lord about our kiddos’ medical stuff, but honestly, when something new crops up for one of my kiddos…it takes me a while to process.  Hasn’t she dealt with enough?   One more thing…really, Lord?  I handle things for me better than when it is my children having to face them. 

And I’ll get there, where I say, “Lord, your will be done with my baby girl"...but right now I’m still wanting to whine. 

1 comment:

  1. Joli, I'm going to continue to watch how this turns out. I feel like we will need to make that same decision at some point. Caylie at 5 1/2 is still the size of a 2 or 3 year old. We'll see . . .



Related Posts Plugin for WordPress, Blogger...