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Crohn's Disease?


Forum: Children with Special Needs

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  #1  
April 23rd, 2009, 01:01 AM
Dacontay4's Avatar Mega Super Mommy
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I'm not sure this belongs in this group, but...I was wondering if there were any other mommies of children with Crohn's disease? We just found out my daughter has it.
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ALEX
Wifey to David. Mommy to Mady, Connor, Taylor, Grier, Chandler, Evalyn and Bryce
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Mason Charles (1/3/05) and Kaydence Faith (4/30/10)

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  #2  
April 23rd, 2009, 05:04 AM
Ditzzy's Avatar Stupid Lamb;)
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Welcome to the SN board! Of course you belong here.
I'm not sure if we have any Crohn's kids or not, but we do have some g-tube kids and other GI issues. It's a diverse group, which is great.

I'm sorry your DD is dealing with Crohn's. I know it can be painful. We're always here for support. Do you ar your DH/SO have it too? I know it can be genetic.
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  #3  
April 23rd, 2009, 05:29 AM
Dacontay4's Avatar Mega Super Mommy
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Thank you Hope

Nobody else has it, but my daughter has an identical twin, which seriously increases her chances She just had surgery on Monday ad had a portion of her colon removed, and she's on a temporary colostomy now. Hopefully we can get out of the hospital on Monday. She's 14 months old and has dealt with GI issues since she was born, so I am glad we got some answers...

I'm 7 months pregnant, and I'm going back and forth between wanting to bank her blood or not. Right now there isn't any use for cord blood in crohn's, but there are new discoveries all the time! It's so darn expensive though, and my PGI told me flat out he doesn't think we'd ever use it. At 14 months she's younger then most crohn's patients, and I am certainly new at it...kind of uncharted territory for us.
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ALEX
Wifey to David. Mommy to Mady, Connor, Taylor, Grier, Chandler, Evalyn and Bryce
2 sweet angels born straight into Jesus' arms:
Mason Charles (1/3/05) and Kaydence Faith (4/30/10)

Check out my blog at
http://davealy.blogspot.com



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  #4  
April 23rd, 2009, 05:34 AM
Ditzzy's Avatar Stupid Lamb;)
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Wow, you have your hands full! 14 month old twin (one w/ special needs) and 7 months pregnant. I don't think anyone can be fully prepared for a medically fragile child. ((Hugs)) to you, hon.

I hope your hospital stay is nearly over. Do you know how long she'll have the colostomy? Poor baby.
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  #5  
April 23rd, 2009, 09:27 AM
iamkc's Avatar Platinum Supermommy
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Welcome! I'm so sorry that you're going through all of this right now. You must be exhausted-twins, one SN, and 7 months pregnant! I'm tired just thinking about it!

My son has a lot of GI issues. I have something like Crohn's, so does my cousin, and they think that both of my kids COULD have it. We honestly haven't even started the whole process with our 2 y.o. He complains about his stomach hurting a lot, but they want to wait until he heals from having tonsils/adenoids out. He had severe sleep apnea, and they think that maybe some of his other issues could have come from that. Our other son is nearly 11 months. He's been through so much with his GI-no colostomy, though. Again, they're trying to figure out what issue goes where for now!

How long will she have it? I hope that she gets out by Monday!!! Does she seem to be doing ok since the surgery? I hope that this helps her tremendously.

In the meantime, post away. These ladies are wonderful!
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  #6  
April 23rd, 2009, 09:54 AM
Dacontay4's Avatar Mega Super Mommy
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She's going to have the colostomy until further notice...they won't take it out before we go home, a few months maybe...and the rest of it wasn't in good shape either...so we'll see. Honestly she is like a completely different kid just in the few days it's been. When she woke up after surgery on Monday, she was GIGGLING. In her 14 months, she has never had a bite of solid food, currently she's being fed on IV...she refuses solid food and the formula isn't good enough so we went the IV route, which may continue for a little while. Looking through information about colostomies, it doesn't scare me as much as it did...if she does end up having to have a colectomy. Kids with colostomies live perfectly normal lives, they can do everything any other child can do...and already not having the excruciating pain she did before it's made the difference of night and day. Obviously I don't want it, but I guess I could accept if she did need it...does that make sense? I like seeing my baby pain free, for a change.
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ALEX
Wifey to David. Mommy to Mady, Connor, Taylor, Grier, Chandler, Evalyn and Bryce
2 sweet angels born straight into Jesus' arms:
Mason Charles (1/3/05) and Kaydence Faith (4/30/10)

Check out my blog at
http://davealy.blogspot.com



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  #7  
April 23rd, 2009, 10:04 AM
iamkc's Avatar Platinum Supermommy
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Giggling! What a trooper! It's amazing what pain can do to a person. It's heartbreaking to see how much pain your child has been in based on their behavior after the pain is taken away! I'm excited for you guys that she's already feeling so much better. I hope that it just gets better from here on out!

You're right-kids with colostomies live perfectly normal lives. They have something else to take care of, but I hear that it gets easier. My dad's cousin had a colostomy and colectomy. We would never have known if they hadn't told us! In fact, we also noticed how much happier he seemed. He ran our day care when we were little, and all of a sudden, he could play with us! It was great! I hope that she just continues to get better and better! I know that some kids eat better afterward, when they start feeling better. Maybe...?

I'll keep sending good thoughts to all of you! (And I just saw your siggie-you have more than just the 2 and baby on the way! Busy you!)
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