In May when we were at our CF appointment, Dr Pete and I had a pretty deep conversation as Maddox is very little for his age. He’s really short and skinny and never in a good place on the growth charts. The weight gain has always been an issue from Day 1 as CF’ers have a struggle to thrive. In the discussion were a few different future options such as growth hormone injections or a feeding tube. Dr Pete stated in this follow up that the reason why Maddox was so little was not CF related and there might be another underlying condition we haven’t discovered yet.
I’m sure if you were in the room with me, you would’ve heard my heart hit the floor. Seriously? More surgeries? More paperwork? More tests? More doctor appointments? Is this the right course of action in the future? Should we wait until his older? What else am I missing that could be delaying his growth? As a mom, what did I miss?
I’m sure Dr Pete saw the blood drain from my face and the question of, what do we do now?
He then stated that we would have specific blood panels ran with direction to thyroid, glucose (CF related diabetes), growth hormones and the normal blood panels. He also referred us to an Endocrinologist at Children’s hospital, Dr Laura.
One thing I can say for Maddox, if you give him the confidence of some goo, he is amazing at his blood draws now. It’s weird for a parent to have your child rock blood draws as you never wish for them to have to go through this so much.
The panels were drawn and the order for a meeting was sent to Children’s to get an appointment lined more (phone calls).
Later on in the summer we were able to get in and meet with Dr Laura and she is amazing. We were with her for over an hour. She listened to Maddox’s entire story, we looked at every blood draw, we looked as his growth charts and did a full body visual scan of Maddox (from head to toe). She was so understanding to my concerns and my thoughts.
Her initial reaction was that Maddox does not have a growth hormone issue just by a visual inspection as apparently kiddos that have that issue have very specific common traits; high pitched voices, a certain body posture and a different energy level which Maddox didn’t have any of those issues.
She presented different thoughts and ordered a bunch of labs (8 vials worth) so we could have a trend on a few of the panels that Dr Pete had ordered and a few other things she wanted to double check. She also ordered a hand xray, which I thought was very bizarre. Why an xray of a hand?
She then shared that there is enough history and research done on kiddos that by an xray of a hand, the team can see how his skeletal body is measuring compared to others. They are able to measure the distance between all his joints, the length of the bones in his hand and the overall size and share how old his body is based on his bones. Who knew?! This was a new revelation for me that I thought was very interesting.
I thanked Dr Laura and we are off to different parts of the hospital to have an xray done and more blood drawn. Thank goodness for the goo. And now the part where we wait for all the blood tests to come back and a new one to add to the list – hand xray results.