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Wednesday, July 18, 2012

Searching for Answers

We have truly been blessed with an incredible gift.  Lily is such a happy baby, and lights up our world!

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I haven't really discussed it much, but Lily has been having some health issues.  You would never think it by looking at her. She is the picture of health. She is over the 95th percentile in height, and has some baby chub.  Developmentally, she has always been ahead of the norm.  Other than a few illnesses,she has been, for the most part, very healthy. 

At her 9 month checkup, they did a toe prick to check her hemoglobin. The results showed that her iron was low.  They immediately had us go to the lab for another blood draw, which was quite a process.  It involved them not getting a vein after multiple sticks,  then Lily eating her bandaid on the car ride home.  That blood draw showed that she was, indeed, anemic, and the pediatrician had us start giving her a daily iron supplement.

In late May, we went for repeat blood work to check her iron levels.  The results showed that her iron was still very low, and that her white blood cell count was down.  Another repeat blood draw in late June yielded the same results.

As a result, we set up an hematology/oncology appointment at Children's Hospital, in Pittsburgh.  I have been very nervous waiting for this appointment.  I knew what they were trying to rule out.  The dreaded C word.

Early this morning, we took her to the appointment.  Just as she has the past 3 times, she sat perfectly still for her blood draw.  The lab tech was so impressed with how good she was.  She charmed everybody with her cuteness (it's those giant blue eyes, I swear), and her doctor kept telling us what an incredibly good baby she was.

I breathed a literal sigh of relief when there was no mention of cancer.  Her official diagnosis is Neutropenia and Anemia.   The only problem is, we don't know what's causing it. 

Lexie had Neutropenia as well.  It was one of the first things I wrote about when I started this blog.  It's a strange coincidence that Lexie was diagnosed on July 17, 2009! Lily was diagnosed just 3 years and 1 day later. However, Lexie was going through chronic diarrhea at the time, due to an egg allergy.  We never continued with discovering the cause, because it would have meant a bone marrow biopsy, and we felt that there was no need, considering she had a very mild case.

Basically, Neutrophils are a type of white blood cells, that help fight off infection.  When neutrophils are low, a person has Neutropenia.  Most cases of Neutropenia are seen in cancer patients who are receiving chemo, but that, obviously, is not Lily's case.  A Neutrophil count is called an ANC.  The ANC count is supposed to be 1500.  Lily has fallen into the moderate and mild range of Neutropenia, with numbers ranging from 800-1300. 

There are many possible causes for this.  One possible explanation is that she's part of the 2.5% of the population who naturally fall beneath 1500.  That's what we're hoping for.

Other causes could be linked to her anemia, an underlying infection or virus in her body, or she could have a genetic condition called Cyclic Neutropenia.  The pattern of her ANC counts, and the fact that Lexie had Neutropenia, is a good indicator that it may be Cyclic Neutropenia.  We are planning to have Dylan and Lexie get a blood draw.  Lexie is a year and a half overdue for one, and Dylan has never had one.  If one of them is Neutropenic, it would indicate that the cause is genetic!

Now we begin the search to find out what's causing this.  Every week, for 6 weeks, she has to have  a blood draw done at the lab.  After that 6 weeks, she has another appointment with hematology/oncology.

During this, we were given strict precautions to stay away from anybody who is really sick, and to wash our hands a lot.  If she ends up getting a fever over 100.5, we have to call the hematology/oncology clinic, then head to the nearest ER immediately.  Because her Neutrophils are low, it makes her more prone to getting sick, and makes it difficult for her to fight off infection.  She could get very sick, very quickly, which is why she would need to be seen right away.

Those facts are scary, but I have faith that we will get to the bottom of this.  The doctor we saw today was amazing.  Once we know the cause, we can treat it, if necessary.

We wouldn't have even known there was something wrong if she hadn't had the routine toe prick done. I have a hard time looking at my baby and knowing that something is off inside her little body.  She's so perfect on the outside, and I want the inside to match!

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18 comments:

  1. I have taken notice of your casual mentions of her blood draws and have been wondering how she is doing. I'm sorry to hear this, but thank God no mention of the C word!!!!! I will be thinking about her and praying for her.

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  2. You guys will definitely be in my prayers! I don't know what you guys are going through but it does give me pause to remember to always be thankful for my health and my daughter's. Hope you find answers soon!

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  3. Bless her heart. I'll be praying you find clear answers soon!!!

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  4. (((hugs))) Im glad you got some answers and hope its an easy `fix` I will be praying for you all xoxo

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  5. Poor little thing! I'm sure your doctors will figure everything out and Lily will continue growing into a happy, healthy girl!!! Sending some extra prayers your way!

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  6. Aww, poor Lily having to go through all of that. And poor you too!

    I hope you're able to figure out the cause and treat it easily.

    As an aside, my mom was just diagnosed as severely anemic and started iron. After two weeks, her levels weren't any better, so they just upped her dosage. She goes back on Tuesday to find out if that's working. if not, it will be more testing.

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  7. Sweet little Lily, she is so lucky to be surrounded by so many than want to make her better. I hope you get some answers soon. xoxo

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  8. thinking of you and your family...

    I am hoping like you say, it's just low levels.

    I would be a wreck too, so make sure you're taking care of yourself through this process...and you are right, what beautiful blue eyes!!!

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  9. I am thinking of you Stefanie. When John was a baby he had a fever every day. We saw a bunch of doctors, and it just feels wrong to sit with your healthy baby at doors of doctors with ominous titles. We never figured out what caused John's constant low grade fevers, but he seems to be fine... I will say a prayer for Lily!

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  10. I was so relieved when you said it wasn't the dreaded "C" word! I'll pray for your little one and the rest of your family. I hope everything turns out well and that this ends up being something that is easy to treat and doesn't cause your sweet BEAUTIFUL little girl much problems.

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  11. Oh, Stefanie! I had no idea her blood draws were so serious. Poor baby :( My thoughts and prayers are with her and your family!

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  12. Bless you!! I wish we lived close, my chiropractor at Southern Pines Chiropractic Center is amazing & would be able to help you, I think. She found Kenlee's dairy allergy when all of the true Dr's were not finding the problem, just giving her steroids trying to hide the symptoms. She does hair analysis & saliva testing to find true reactions to adrenal systems. It sounds crazy, but she is AMAZING.
    I've also heard giving black strap molasses helps you absorb iron in your system better. Maybe you could find some at a health food store?
    This is just food for thought...I know how exhausting it is as a parent going through all of the tests & trying to figure out the problem.
    Hugs to you!!

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  13. I will be thinking of you! I hope you can get some answers. It is always scary when anyone is sick, esp. the little ones. Poor baby! Many hugs and well wishes my friend!

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  14. Praying for you guys and hoping for the best! Love you sweet Lilybug!

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  15. Prayers for you and your precious little girl! I know the not knowing is usually the hardest thing for a mama.

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  16. Poor little cutie! :( Will continue to pray for Lily. Hugs!

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  17. I am so glad that it wasn't the dreaded "c" word! So thankful for how she lights u your life. Praying for health for her!

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