Thursday, November 29, 2012

Thanksgiving Day 29

Today I am thankful for all the doctors we work with to keep Sadie healthy.

Over the last few months I have had a LOT of people comment on how big Sadie is.  You're right, she's huge.  In fact, she's the size of a 5-year-old.  How do I know this?  Because we've recently discovered that Sadie's brain is telling her body to start puberty, which has triggered a growth spurt.

I know what you're saying to yourself right now... she's only 2!!  Yep.  And she's growing boobs and pubic hair.

This is why I'm thankful for doctors.  I noticed these developments months ago and said something to my other special needs mommy friends and everybody said it wasn't anything to worry about.  But when we saw Dr. Wendy, she agreed we needed to visit endocrinology.

The endocrinologist (Dr. Olson) confirmed that Sadie's body is indeed in early puberty.  I guess this is common for brain damaged children.  It's just another result of Sadie's brain not functioning properly.  A normal 2-year-old's brain would suppress the estrogen that comes when one goes into puberty, but Sadie's is not.

While visiting Dr. Olson, Sadie had some blood drawn to confirm the levels of hormones in her body.  She also had an Xray taken of the growth plate in her hand.  The danger of hitting puberty so early (besides starting her period when she's 3!!) is that her growth plates would fuse early and that would cause bone problems. 

Dr. Olson called today and said Sadie's growth plates show the development of a 5-year-old.  Sadie has gone from below the 20% of a 2-year-old in July to the size of a 5-year-old in November.  I'm guessing the whining, tiredness, and difficultly sleeping we've seen in the last few months was due to growing pains!!  Poor girl.

However, Sadie's blood test did NOT show abnormal estrogen levels.  Dr. Olson says that this is going to be a problem when asking insurance to cover estrogen suppressing medicine.  Apparently the estrogen is given in spurts and on that day, at the time they drew blood, Sadie didn't have any estrogen in her system.  But the advancement of the growth plates does not happen in the absence of hormones, so we have to prove that she does have an abnormal amount of estrogen to justify to the insurance company that she does need an estrogen suppressant.

So, Sadie will go in for an estrogen stimulation test.  They will draw more blood to establish a baseline, then attempt to stimulate her brain to release estrogen by giving her some kind of medicine.  Then in 3 hours they'll draw her blood again.  That's gonna be a fun day...

The other possibility is that she has a brain tumor.  Dr. Olson is very confident that because of Sadie's significant neurological problems, the brain damage is the cause of the precocious puberty.  However, he wants her to have an MRI, because if it is a brain tumor, they (obviously) need to know that.  And how bad would you feel as a doctor if you assumed it was brain damage related when really there was a big ol' tumor in there that you didn't know about?  Most likely it is NOT a brain tumor (I just feel like I need to say that).

All this needs to happen in the next few weeks, so that when we go back to visit Dr. Olson in January, we can discuss treatment.  We have 2 options for estrogen suppression.  Sadie can either have a shot every 3 months, or have an implant placed and replaced every year.  Either way, it is important that we suppress the estrogen for her (because her brain can't do it by itself) until she reaches the age when she should be going through puberty.  So, she'll be on this medicine for the next 10 years.  Yes, I said 10 years.

So, yes, Sadie is big.  And it took the doctor believing me to make the referral to the specialist.  And now we are under the care of a new doctor, who I like very much.  And they're all working together to help Sadie be taken care of and to help us make sure she is getting everything she needs.  And I am so thankful that there are people out there who want to be doctors for special needs kids, because I can't do this alone.

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