Wednesday, December 4, 2013

Officially Growth Hormone Deficient

Mimi had a busy end of November, with two trips to Hershey Endocrine. On November 18, she underwent a morning long Growth Hormone Pituitary Stimulation Test- which is three and a half hours of blood draws. Awake and alert...hard enough for adult. Imagine getting this done at three years old.
If your child is having growth issues, it can take a long time to get to this test...and so for us, it was a major milestone, that we knew would lead to her diagnosis.

The results came back a week later, and we came in to hear them.

My little sweet petunia failed the test quite impressively, proving to ALL that she is Growth Hormone Deficient, and has Pituitary Dwarfism.

The two tests they ran came back in the 2 and 4 range with an average of 3.
A score of 10 or under can prove you need the $2,000-$3,000/month growth hormone shots. A low level like Mimi's shows that she really isn't creating much growth hormone at all, and the lack of GH she makes can have a significant impact on her entire body.

Is this just about being small? No, sadly no. And I love munchkins, gnomes...gnome houses. Small things, probably more than the average person. Her lack of GH is impacting her hair. teeth. throat. ear canals. her heart size. muscle size. organ size. energy level. etc.

So the question in the followup room was, How are her other pituitary hormones functioning?

Poor Mimi...She was sent right out the door of the office and across the street to the medical center lab for another blood draw. but this time just one. And yes, she screamed from the minute he said go, all the way to the car, in the car, across the street, out of the car, walking into the lab, during the blood draw, and then, stopped when she got her sticker. (here is the save the day sticker. she attached it to my bedroom wall. and I let her keep it there. LOL)

So now we wait to hear back on the labs and a sedated MRI scheduled for January to examine the structure of the pituitary.

For all the research I've done from week 20 of my pregnancy until last week, I still could not have prepared myself. I am sad she needs shots for the next 10 years, or maybe even every day for life. I love her and I don't want her to go through all this.

I know I did absolutely all I could to find out for her what was going on. I prided myself in realizing that few kids Mimi's age get this test done (maybe 12 a year in children that young per institution...usually it's later in their childhood, say ages 8-12.) I also knew what to ask at the followup. What about her other levels? What about her eating so much? Yes, her development is right on, but she does tire out and need food, a lot. And when is the MRI?

I am proud that I joined the MAGIC Foundation a year ago, drove 1500 miles to attend the conference. Met with amazing endocrine doctors in the USA and asked their opinion.

I just have to get used to the new normal, and brace myself for a shelf fridge of medical items and a needle dispenser. I want to make the best of all the appointments that are in our future, and make those days as comfortable and happy as possible.


Wendy Thompson said...

Thank you for talking about it so few feel comfortable doing so. Be prepared for people telling you that you are wrong in so many ways just know you know your child. I am impressed that you got drs to listen to you so early none of mine would. My daughter was eight when we stated on the trip (her numbers were about the same) and nine at dx. She is 13 now and doing great. Keep blogging thank you again.

sweetmaggiemay said...

Thank you Wendy! i was a bit shocked to realize how rare it is to actually test at three years old. I didn't know that until the day of the test.Most kids are tested at the time yours was. So that is the typical situation.
Kids should be identified younger by their primary doctors and seen by Endos sooner. The Endos like their own measurements.