Wednesday, January 11, 2012

Kellsey's Blood Work

So Kellsey's neurologist called today with the results of her blood work that she had done last week. Beyond being very anemic, which we already knew, she also had extremely high thyroid levels. She's had her thyroid tested twice since she's been home with us because kids with Down syndrome are prone to hypothyroidism (low thyroid levels) but it looks like she may have hyperthyroidism or possibly even Grave's Disease. That's pretty rare for a kid with Down syndrome. Just call us the rare family. They're sending her to an endocrinologist for a further workup and treatment plan. I called the one they referred us to today, but hit a machine and they haven't called back yet.

Beyond that, Kellsey's white blood cell count is really low and her MCV level is high. That bought us a one way ticket to the hematology/oncology clinic. *sigh* Sadly, we already have one of those doctors, so there was no recommendation needed. Kennedy's oncologist is out of town and can't get us in until the end of January, but neurology is going to fax over a copy of her blood work so they can look at it before we get there.

Over and above THAT, Kellsey's 24 hour EEG went fairly well. Kellsey did well not taking all the probes off her head. We won't get those results for a few weeks yet. She's been having some strange episodes though, more than usual, that have us really concerned. We caught some on video, as requested by her doctor, and sent them to her neurologist and to her spine surgeon so they are aware.

Lots of stuff... And I'm trying not to worry. We've never dealt with thyroid issues before... we've dealt with oncology stuff of course, but we're praying HARD we never have to go down that road again. I am holding tight to the fact that we don't know what her platelets are, and that was the key with Kennedy when she was diagnosed. For some reason they couldn't find those results, so I'm hoping that's because they were normal!

I am also holding onto the fact that Kellsey had screwy blood work back in October with high sodium and her GI doctor freaked out. There was threat of hospitalization and rare kidney disease and panic ensued and they sent her repeat labs off to Mayo Clinic and in the end everything came back fine. SO she's already proven that her blood does some CRAZY things. In between sending up prayers, taking deep breaths, and trying NOT to think about walking into oncology with another child, I'm reminding myself of that. Crazy, inexplicable blood. That's what it is. Right? Right. If you all could pray for the same thing, I'd really, really appreciate it!

25 comments:

Amanda said...

Oh no, poor Kellsey (and poor Garcia family)! I'm hoping beyond hope that this turns out to be nothing but more crazy, inexplicable blood work and that miss Kellsey is absolutely fine. You all are in my thoughts!

Notsopc said...

Deep breath... and already sent a prayer up.. You must be going crazy...

Evil Stepmother said...

Total fluke. I'm sure of it.

Zoey's mom, Heather said...

Breathing deeply with you and sending prayers of just plain crazy, inexplicable blood. Because you know, that our children sporting that extra chromosome have some inexplicable blood stuff going on, outside our other extra chromosomed children that decided to take us on that wild "other" ride.

Will be keeping Kellsey close in thought and prayer. You too Renee. You too.

Runningmama said...

I am hoping things are going to be OK, I have heard thyroid issues are pretty manageable. The clue to Emily's cancer was also her platelets, like Kennedy, and we knew they were low because we struggled with petechiae. Our oncologist told us that kids with DS blood results tend to be all over the map and have a very wide range verses typical kids whose normal is a very narrow range...so I am praying her bloodwork being off doesn't mean anything and that if you have to deal with the thyroid stuff that it isn't overwhelming.

Rhonda said...

Know that I am praying here in Nashville!

ourjoyfulljourney said...

We serve an Awesome God! Keep holding on to that!!! He can do ALL things! I am praying for wisdom for the doctor and for a miracle here!!! :)

Ingrid said...

Hyperthyroid could explain her difficult sleeping. God bless, I hope it all works out!

Lisa (DanielsMommy) said...

My heart is racing after reading this update. I will be praying it's just 'normal for her' type thing and everything is ok. Hugs!!

Mary said...

Wow that is a lot to digest. Not sure if you read Ella Grace with the Pretty Face but she has the same thyroid thing going on and was diagnosed with Graves. You might use Kacey as a resource on that little portion. Good luck with the rest I hope you get resolution on all of it.

Lynn said...

Hope the tests end up being wrong!
Continuing to pray!
Romans 5:6-9 For when we were yet without strength, in due time Christ died for the ungodly. For scarcely for a righteous man will one die: yet peradventure for a good man some would even dare to die. But God commendeth his love toward us, in that, while we were yet sinners, Christ died for us. Much more then, being now justified by his blood, we shall be saved from wrath through him.
Prayer Bears
My email address

Sweet Pea's Mommy said...

Crazy inexplicable blood is what we will be praying for!!!! Stay strong. You continue to amaze me every day with all that you do with your wonderful kids!

Ann said...

Oh Renee I so hope this is just "normal" Kellsey. Praying!

Elle said...

Megoblastic anemia (which causes high mcv) can also cause low white blood cells.Treatment is vitamin b and is pretty easy to fix.Prayers that it's nothing!

Elle said...

Megoblastic anemia which is marked by a high MCV can also lead to a low white blood cell count. The treatment is fairly easy with Vitamin B and folate. It's usually seen in patients with celiac but I am sure if Kelsey is having absorption problems that could be the cause. Praying it's nothing serious!!

stephanie said...

Praying!! and Praying!

Holly Aytes said...

We will definitely be praying! You know you gotta have at least one child is has something crazy and rare, right! LOL Taylor has HSP...she will always have it and anytime she is sick with anything as simple as a cold/ear infection/strep/stomach bug it can return! Luckily with some rest and pain meds she is back to her normal self in a few days/week. How long before Frank leaves? Just wondering if you were going to be getting results back before he goes.

.emma.stormy. said...

I'm so sorry, Renee....I can't imagine how scary it is for all of these unknowns. You, Kellsey and the all the K's (and Frank of course) are in my prayers, as always. Much love.

Anne B. said...

Praying that everything falls into place under the gentle mercy of our awesome Father!! Just be a strong advocate because sometimes with many docs in the mix, they don't communicate very well with each other and "links" get missed. Be encouraged by Kellsey's smiles and giggles!! (((HUGS)))!!

ZudaGay said...

Praying here in IL!!! And sending hugs....

mom2natnkatncj said...

Ahhh what a crazy emotional time! When is Frank supposed to leave? Hopefully he's around for all of this stuff to help you through it. Maybe later today you'll get a call that they found the platlets and all was fine there. The good news is everyone is on top of things. Hang in there and we'll be thinking of you.

Kellybooh said...

Praying for Kellsey! I'm sure the Endocrinologist will want to do this but make sure they run her bloodwork again before trying to diagnose her. I've recently had some thyroid issues originally I was told I had hyperthyroidism, I even had an iodine test to confirm that then a few weeks later my endo. wanted to do more bloodwork just to confirm and that bloodwork showed I now was hypo. so she wanted to do more blood work 3 weeks later and that came back normal. She called it "thyroiditis" or a "thyroid storm" which can be caused by a virus. When I was hyperthyroidism I had heart palpitations and lost weight is she having any of those issues? Praying you find a great Dr. to care for her and that Gods healing and comforting hands will surround her and your family!!

Dame said...

I don't post too often, but I have major thyroid issues. Primarily I have hypothyroidism but since mine tends to not only function very low (but fluctuate very often which is oh so fun) I've had a lot of hyperthyroidism moments as well. If she is really JUST hyperthyroid honestly the treatment doesn't have to be overly complicated, so don't stress too much! (Its really just another pill, or potential iodine treatment to stop the issue completely.)

Hyperthyroid can cause weight loss, tremors, nervousness, fatigue and trouble sleeping. One of the most annoying things about thyroid issues is that they can often be overlooked or run concurrent with other things and it can be so hard to tell what is the thyroid and what is something else.

I was an medical oddity as a child, much like Kellsey! I am praying things will work out okay and I have a good feeling that they will.

Endeavoring Mama said...

Praying everything will turn out better than our fears would lead us to believe.

Kim said...

The blood is a crazy thing, it changes constantly. My twin boys both have von Willebrand's Disease and depending on what cycle their blood is in we deal with different bleeding issues and different readings on tests. They could have the same tests done another month and come back not so bad.
So praying it's just a crazy cycle in her blood and all is ok. Fingers crossed for a good outcome!
Kim in VA