Sikcell: People living with Sickle Cell

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Feeling ok or not?

Hey ladies and gents,

I was just cruising through this site and had a quick question. Which of you have children with sickle cell that are older than 2? I ask because my daughter is 1 and sometimes I can’t tell if she’s hurting because of not feeling well related to her diagnosis or because of something else. Were there any other early warning signs that let you know that something wasn’t right? She had swollen hands a few months ago..but I felt that maybe I could have done something to help that prior to it becoming so painful. Please get back and let me know..
Thanks

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Permalink Reply by Sickle Cell Warrior on September 21, 2009 at 7:37pm

I don't have kids, but my mom said that I used to cry alot when I was younger. That was how she could tell when I was in crises. Also, I would be holding my limb, or acting really sensitive no matter what she did. If I was changed, fed, not tired and still crying...then obviously I was in pain.

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Permalink Reply by Nina R=Audrey on October 20, 2009 at 12:29pm

oK..Ok..I’ve been trying to be very aware of her having crying spells just because she wants me to hold her..or actually crying because she does not feel well.
It was very agonizing that one week..I appreciate the feedback..please stay in touch.

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Permalink Reply by Sharolyn Hutchinson on September 21, 2009 at 8:01pm

My daughter used to drag her legs when she would crawl. Thats how I knew she wasn't feeling good. We as perents know when something is not right. Trust you instincts.

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Permalink Reply by Nina R=Audrey on October 20, 2009 at 12:33pm

Working on not doubting myself so much.
This thing comes with patience and understanding and lots of trusting your instincts.
Thanks so much for the advice!

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Permalink Reply by Soo...kewl! on October 19, 2009 at 3:45pm

Most times a crises cums wiv fever as it's usually caused by infection/malaria...plus ur heartbeat is faster than normal when in crises...those r signs u could look out for!for prevention though always give her a lot of water, crisis or not...