Tuesday, July 21, 2009

Diagnosis: Neutropenia

Okay, so it's not a full diagnosis, but it's what Hematology confirmed.

Lexie had her appointment with Hematology on Friday. It went well, for the most part. They did some blood work, and took a look at the results while we were there. After an exam and questions, the doctor returned with the head of Hematology/Oncology, to discuss the results. I have to admit, my heart stopped for a moment when I saw the head of the department walk in. I'm sure he's had to deliver a lot of bad news to parents sitting in the very chair I was sitting in. My heart goes out to them, because it's a scary place to be.

For Lexie, it wasn't so bad. She does, indeed, have Neutropenia. They said it wasn't severe, but it's something that will need monitored with frequent blood work. Her numbers did drop quite a bit since her blood work on July 6th, but the doctor wasn't too concerned yet, because he said that number can vary throughout the day. If her numbers are lower the next time she gets blood work, then we need to sit down and talk.

Here's the problem: the doctor believes that the Neutropenia is caused by the diarrhea. So until we get the diarrhea figured out, she will have Neutropenia, and need to get blood drawn every few weeks. Right now, the Gastroenterologist has no idea what's wrong with Lexie. It's a vicious cycle!

The director of Hematology/Oncology seems to think that she has Celiac's Disease. I have thought that all along, especially when I read that false negatives are incredibly common, and because that's all that Lexie eats. She was tested in March, and will be retested in 2 months. Even if that test comes up negative, we're going to attempt to go Gluten Free for a few weeks, to see if she improves. From what the doctor said, it can take 5+ tests sometimes, before Celiac's Disease is confirmed. We're probably going to have to work with a nutritionist while making the switch to a GF diet.

Lexie is anemic, but Hematology says that her prescription iron supplement is a no go, because it will most likely make her diarrhea worse, which will make her neutrophils drop even lower, and they don't want her numbers to get into the "severe" range. Right now, they feel that the supplement would do more harm than good.

So that's where we stand. Another two months of monitoring the Neutropenia through blood work, and stool samples to try to figure out what's causing the diarrhea. I'm frustrated, and hoping that no other problems arise before the doctors figure out what's going on!


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10 comments:

  1. My daughter didn't have to do this but I've heard that the 'swallow the camera' test is a great way to a definitive diagnosis if celiac is suspected but tests have been negative or inconclusive. I'm not sure if they could get her to swallow the camera, but then the patient wears a battery pack vest for the day and the camera goes all the way through the intestine. Has Lexie had a biopsy via endoscopy? I know you hate to put her through a general anesthetic but that may be able to confirm what blood tests have not been able to.

    If you would like to talk to the parent of another small person as you launch your gluten-free diet, please feel free to email me. It was difficult to find toddler-friendly foods but we've made quite a bit of progress in the last 4 months or so and I'd be happy to share, if you're interested. Jeri

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  2. I hope they get everything figured out ... that sure is a cycle for mommy and little girl!

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  3. I am glad that they are starting to "figure it out" but I am sorry it is taking so long. I will be praying for your sweet girl!

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  4. I'm praying for you! It does sound like you are stuck in a vicious cycle, so I'm praying extra hard that the Docs can figure it all out SOON!

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  5. I hope they get it figured out soon. I know the frustration of undiagnosed peroblems!

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  6. Bless her heart. I'm glad that it seems that you are getting answers, but frustrating that there are still unknowns. I will continue to pray. Hopefully you will see some results with the change in diet.

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  7. sending love & prayers your way!!!

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  8. My niece had the constant diarhea that wouldn't go away. After lots of time and testing, they finally settled on Crohn's or Celiac's Disease for her. Apparantly those two are very similar?

    She has flare-ups, but then goes into remission. She's twelve years old now and doing good. But we never know when it will flare up again.

    Hang in there!

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  9. My gut has said celiacs all along too but it's your gut instinct that's the one to swim by. A GF diet might be the answer. I know a lot of people living it and could point you in their directions if you have questions.

    I'm glad you're one step ahead in one direction with a semi-diagnosis anyway. My prayers are still with you as you find out how to help your baby girl! Sending hugs.

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  10. okay, ignore my comment above. I asked my sister and what Lexie may have is not close to Crohn's. I mis-spoke it.

    The ones my niece may have are Crohn’s or Ulcerative Colitis. My bad!

    Sorry,
    Erica

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