Our Five Ring Circus: Off to Hematology we go!

Tuesday, July 14, 2009

Off to Hematology we go!

I haven't had the urge to write about what has been going on with Lexie, after an awful appointment last Monday, with her Gastroenterologist. I left the appointment, feeling as if we had wasted 5 long months with a doctor who has made no progress whatsoever, and had no clue what was going on.

I know a lot of you have already heard what's going on, but here's and update for those who don't:

Lexie did end up having more blood work done on Monday. Her Gastroenterologist called with a very vague message about how she needed to speak with us regarding something that popped up in Lexie's blood work. After hours. On Friday night. And I missed the call, and ended up waiting all weekend, and all day today, only hearing from her at 6:30 this evening.

Lexie's blood work in February showed that she was anemic. This round of bloodwork showed that her levels had dropped, so she needs to go on a stronger perscription iron supplement. On top of that, her Neutrophils were several hundred points lower than what is considered normal. The Gastroenterologist said that her levels fell into the range of Neutropenia. Although her numbers were low, she is not considered to be severe, but we do have to go to Hematology now. They will confirm if she really does have Neutropenia, do in depth blood work, and try to find the cause of it.

In the meantime, we have to do yet another stool sample. If the results are positive, they are going to do an endoscopy. I am keeping my fingers crossed that it won't come to that!

Lexie is doing well. You would never know that she was having problems just by looking at her. She has never been categorized as failing to thrive, but obviously the chronic diarrhea is starting to affect her, with all these deficiencies showing up. Her eating habits (although they seem to be improving this week) and chronic diarrhea tell a different story, though.

I am hoping we are able to get an appointment with Hematology within the week, and get this thing figured out. And hopefully Lexie will be diarrhea free in the near future!

I will keep everybody updated as we get the tests done, and receive more information. Thank you for the kind words, thoughts, and prayers that you've given us over the past few months, as we've dealt with this. It's been an emotional, frustrating, sometimes scary roller coaster ride, but hopefully the end is in sight, and Lexie can get the help she needs so she can get back to normal!

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  1. I hope everything works out! There's nothing worse than seeing your baby sick and not knowing how to help! Keep us updated!

  2. I've been waiting to hear. Thanks for the update...

    Goodness, I sure hope it doesn't come to that either, but whatever it takes to get her WELL. Poor little thing. I know it's hard on MOM and DAD too though. Will keep you guys in my thoughts and prayers.

  3. boy this seems to never end for you guys. how frustrating

  4. Oh my! I'll be praying for you guys to get the answers you need from the next round of testing to find out what is going on and to get it FIXED for poor Lexie!

  5. Ohmygoodness....I will put you guys in my prayers. It is so hard on us mommies when our babies are sick and we don't know the hows and whys.

  6. Poor thing!

    I can't imagine, as a parent, what you endured over the weekend after a dreaded "we need to discuss the results" call! Why would they leave that message on Friday night?

    I'm sorry you're going through this!


  7. Hate that your little one is having health problems! Hopefully they get it all worked out soon.

    Oh, and aren't Great Danes hilarious? They think they weight 20 lbs instead of 120!

  8. Oh poor sweetie! I am so sorry she (and you) has to go through all this. Keeping you guys in my thoughts and prayers!

  9. I was wondering about her just the other day, so thanks for the update.

    You poor things. It must be so frustrating to be five months into the process and still have your questions unanswered. And what a terrible thing to do...to keep you waiting all weekend. I will continue prayers for all of you!

  10. You know I'm praying for your baby girl. This is so scary for both of you, I'm sure. I pray they can help her quickly!

  11. Seriously!? What a ride you have been on here. I hope this is the answer for you. Prayers heading your way!

  12. Neutropenia can be a symptom of celiac disease--general anemia is a very common symptom. I hope that you find answers soon.

  13. Hi, I am from MckMama's site... I have only read this post so you might have done some of the things that I am suggesting but I hope that it gives you hope! I have had food sensitivities most of my life but it didn't get really bad until about 3 years ago..I am also supposed to be taking iron.. but I can't take the pills.. They make everything worse.. even if it is gluten free.. I had to go to a natural food store and get liquid iron. I also have to eat a lot of white rice... I have been tested for celiacs but because I had been gluten free for 4 months it came up negative and I didn't want to get that sick again..

    One thing I did was go to a naturalpath and pay (at that time it was 300) to get a BLOOD sensitivity test done... With a blood sensitivity it listed everything... Cow's milk, casein, Goat's Milk, beef, chicken, egg white, egg yolk, gluten, oat, wheat, etc... It was in sections: Dairy, Meats, Grains, Fish, Nuts, Shellfish, Fruits, Vegetables, and Other(yeast, sugar, chocolate, coffee, honey and mushrooms) My results were that I couldn't have ANY dairy.. No cow's milk, Goats, I can't even have soy milk as my body reacts the same way.. Eggs were also on the no no list as well as Gliadin and Gluten... To put it plainly, when I have dairy, I have 10 minutes before I'm in the washroom loosing everything I ate and drank...

    I'll be praying for your cute daughter and your welcome to email me anytime if you have any questions... ndafab@gmail.com

  14. We will pray for you. Our daughter has neutropenia but something differnt so I know alot about this.

  15. I also just came over from your prayer request on MckMama's prayer request blog, so I haven't read your earlier posts. My daughter is not in remission nearly one whole year after being diagnosed with Crohn's Disease. We had to rule out a lot before that, but her colonoscopy made it clear. She is now trying the Specific Carbohydrate Diet while on Humira to get some relief. She was in the hospital in Feb and Mar of this year due to malnutrition, etc. Even though my daughter just turned 22, your daughter's story sounds very familiar to me.

  16. Awwww...Lexie. Isn't it amazing how kids are such troopers?? Sometimes you never know all the things going on with them. As long as they're having fun, you'd never know. Hope she's feeling better soon.


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