I'm going crazy

If you're wondering where I've been the last week and a  half... I've been going crazy.

Sadie started having insomnia a couple of weeks ago and we had no idea why.  Usually her insomnia stems from pain.  But, she can't tell us what hurts.

Since this precocious puberty seems to have kick-started 5 year molars, we naturally assumed her mouth hurt.

We'd give her medicine and it didn't help.  We'd rock her all day and it didn't help.  She would no longer sleep in her bed, she would only sleep in her chair...when she would sleep.  Then the not sleeping would compound the pain and she was a MESS.  I mean screaming all day and night.  Needing to rock all day.  Not sleeping.  Not eating.  It was like she was 1 again!!

...and I was losing my mind.

Last Monday (the 11th), it was the worst I'd ever seen it.  I was gone all day at an in person staff meeting and it took Chelsea, Grammy, and Daddy to watch both kids.  And Brian sent Chelsea home early because he said she was so frustrated he felt bad for her.  By the time I got home, Sadie was out of control.  Not just whining, but full on screaming... until really late at night.

I finally emailed Dr. Wendy.  I mean, I was ready to take Sadie to the emergency room just so they could sedate her and we could all have a break.  And we still thought it was teeth.  And we thought this was probably going to go on for months.

But then Tuesday morning I was rubbing Sadie's legs and I noticed a huge lump in her thigh where she got her injection a couple of weeks before.  It was about the size of a quarter.  It didn't seem to bother her when I pushed on it, and it was invisible, but it was hot, and I wondered if this could be the source of her pain.

So, I emailed Dr. Wendy again, and I left a message for the nurse who did the injection.  By the end of the day, when they had gotten back to me, it was determined we needed to get to urgent care that evening.  Then urgent care sent us to the ER. And the ER told us it was nothing that wouldn't resolve on its own and sent us home.

But the next day it was bigger.  And it was turning reddish purple, like a bruise.  And she still wasn't sleeping, even with constant advil and ativan in her system.  So, we went back to see the Dr. on Thursday.  Wendy wasn't available, so we saw someone else, Dr. Hartley.

Dr. Hartley called it a hematoma and explained that basically she's reacting to the injection going into her muscle.  It's a blood clot, and it can be really painful.  So, we upped the amount of advil we were giving her and that seemed to help.  And we went back on Friday because he wanted to see if it had gotten any bigger and it hadn't.

Hot packs and advil and we were told it would resolve on its own.

But poor Sadie is still in a lot of pain, and she is still having trouble sleeping.  And although the lump is getting smaller, it's taking a long time.  How do we avoid this in the future?  She has to have this shot every 3 months for like 10 years!!

...and now I'm even more annoyed by this puberty thing.  And I feel sorry for my child who has been in pain for basically 2 weeks straight.  And she can't tell me what hurts or how I can make it better.  And that's why I'm crazy.

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!