It's been a while - part 2: Endocrinology

I don't remember if I ever got to write about Sadie's precocious puberty.  Yes, her brain was starting to release hormones that started puberty WHEN SHE WAS 2 YEARS OLD!!  What a mess.  Basically I noticed that she was starting to grow boobs.  I didn't even think about how big she was getting so fast.  I thought I was pregnant and I was getting weaker, so she just FELT heavier.  Nope, she's huge.  We completely skipped size 3 clothes.  She literally went from size 2 to size 4.  She even wears some size 5s and has a few things that are 6-7!!  Not to mention the diapers she no longer fit into!

When I mentioned something to Dr. Wendy, she sent a referral to Endocrinology where Dr. Oleson confirmed that that is not uncommon.  Apparently, when children suffer brain damage, it effects the pituitary gland, which is where all your hormones are secreted, which can mess up the timing on puberty.  Everybody just kept telling me it happens all the time in children like Sadie, like that was going to make it better.  It didn't.

Anyway, we X-rayed her wrist where her growth plate is (apparently it's indicating that she's 5), did some blood tests, and even had an MRI to check her pituitary gland (and to make sure there wasn't a tumor) and then it was determined that she needs to start a new medicine called Lupron.  It's an injection she gets every 3 months.  The goal is to suppress the hormones and stop the puberty and the growing, and she has to take it until we want puberty to actually start...so for like 10 years.

Yesterday was her first injection.  

We had to order this medicine from a special pharmacy and they sent it to us in the mail.  It came in this crazy big box (think 4 shoes boxes stacked together) and all it was was a tiny plastic container, about the size of a DVD case.  We brought it with us to the doctor's office and the nurse gave her a shot in her leg.  She didn't even cry.  She is amazing.

This whole situation is just annoying to me.  I'm annoyed we have to see another doctor, I'm annoyed that Sadie is so huge.  I'm annoyed that she has acne and boobs and has even started to get another set of molars!!!  I'm annoyed that we have to give her shots, and that they won't bill her secondary insurance, so every 3 months (for the next 10 years) I have to submit a reimbursement form to ACCCHS.

Usually, when it comes to Sadie, I am sad, or I am grateful that we found and fixed the problem, but this time I'm just annoyed.  The whole thing is just so inconvenient.

...just one more thing they don't tell you could happen when you bring home your brain damaged child from the hospital!

Thanksgiving Day 20

I am so thankful today for my new van.  It sucks to have a car payment and the gas mileage has been an adjustment, but I don't think I could live without it.  If I still had to drive my little VW with both kids, I might just not go anywhere.

Yesterday we drove to Phoenix Children's Hospital twice for two separate kids' doctor's appointments.  Driving that van is like riding in luxury.  We're up high, it's an automatic (my very first automatic car!), it's easy to put kids in and out of, it holds the wheelchair in the back... and it has a sunroof!!

So, let me tell you about Sadie's appointment.  We saw the endocrinologist.  A few months ago, I mentioned to Dr. Wendy that Sadie was growing pubic hair.  Then when she gained all that weight, it looked like she was starting to grow boobs.  So, she referred us to endocrinology.  Apparently, it's normal for kids with brain damage to experience precocious puberty, but we were both kind of shocked to see signs at 2 years old!

Anyway, the endo told us that there are 5 stages of development.  A 5 is a fully developed adult and a 1 is where a normal 2 year old would be.  Sadie is a 2.  He confirmed that there is some kind of pre puberty happening.  He also said that these hormones that her brain is secreting are triggering a growth spurt.  She's gone from BELOW the 20% in July for weight to the 90%!!  And her height is in the 95%!

They drew some blood to check for sure on her hormone levels, as well as took Xrays of the growth plate in her hand.  The concern, besides starting her period at 3 years old, is that she'll grow too fast too early and her growth plates will fuse together before they should.  So, to treat this, she'll need to take an estrogen suppressant.  The estrogen suppressant will send to her brain the right signals so that she'll stop growing until she catches up, and will keep puberty at bay.  This medicine would be either a shot every 3 months, or an implant that would need to be changed once a year...and she would take this for the next 10 years basically, until it's actually TIME for her to go into puberty.

This was all a little bit shocking to hear and to think of her being on a medicine for 10 years makes me sad.  But I also understand that it's important for her body not to hit puberty in preschool.  Has anybody else had this issue with their child?  Did the medicine help?

By the way, Ezra's one month well check went great.  I felt silly asking some of the questions I asked, I felt like a first time parent.  I kind of am!  He weighs 12lbs 3oz and is 23.5 inches long.  He's healthy and strong and everything looks good!!