4.24.2012

Why?





warning: some discussion in this post is not for those with weak stomachs

Why? Why Cyclic Vomiting? Why her? Why no cure? Those of you who have read my blog have read many a post about CVS.

The last 2 days have been draining. More so for my 8 year old than for me...although I feel pretty beat up. C suffers from Cyclic Vomiting Syndrome. (also called abdominal migraine). She was diagnosed at 3 with CVS. Unfortunately it took a lot of time, research, and doctor visits to get us to the diagnosis.

 I mean kids throw up , right? Not like this. Imagine vomiting harder than you ever have. All night. Every 15 minutes or half an hour. Imagine your stomach clenched in pain...your head spinning like you were riding the Tilt-a- Whirl on high speed. Imagine knowing as you close your eyes that it will be back in what seems like an instant. Constant over the top nausea, vertigo, vomiting and pain.

C describes it like this :  "My belly rumbles...it feels like something is trying to get out of me, like someone is trying to hurt me. When I get my dizzy eyes ,(vertigo), it feels like something is shaking the Earth. My eyes are open, but I only see black. I feel a lot of nausea...it makes me achy and uncomfortable. The vomiting hurts the most when it is just acid coming out."

Amazingly enough, C has tremendous willpower to rebound the next day. Her waking hours are spent sitting drawing or watching tv. Her episode doesn't effect her appetite. I have her lay low and snack throughout the day. She doesn't eat too much before bed because well..."what goes in comes out."

Our routine of bowl, washcloth, tissues, hair elastic, and mom in the trundle is down to a science. C doesn't have to get out of bed...probably wouldn't have the energy to anyhow.

C is classified a s a calendar kid...she is triggered by time...not cheese or chocolate or stress. She has never been dehydrated or hospitalized. As difficult as each episode is, we always remember that there are kids and adults out there who suffer frequent episodes. It effects their work and school, their social lives.

CVSA has the support of doctors all over the  world helping to find a cure or treatment.

Please tell someone you know about CVS. There are many people looking for answers. Thanks.

6 comments:

  1. MY heart is with you and C. I am so sorry for both of you, my niece has the same thing but not as bad... I have two boys whit Autism and I know how it can be hard... Hang in there, everything is possible.:)
    Hugs
    Elaine

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    Replies
    1. Thanks Elaine. Your kind words are appreciated!

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  2. I feel for your sweetie and for you also. For something this daunting...a plan is the best thing and it sounds like you've got a great one. You are a wonderful mother!!!

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  3. I know this may seem out of the box but is there someone who could work with her on this matter perhaps through Hypnotherapy? If it is time driven this could be addressed perhaps.

    I am so sad to read this. I know you have to deal with it and I know exactly what it feels like to have your stomach go in knots but not on a constant basis.

    Hug,
    Bobby

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  4. So sorry for your daughter, and you too. Your routine sounds so familiar :( My daughter also has CVS, although she has triggers that set off her episodes. She is a 13 now and is pretty good at managing it, knowing when its going to happen, ect. Has your Md ever mentioned growing out of the frequent episodes? Now that my daughter is older, her episodes are much less frequent. Hang in there!

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  5. I think it's great that you are bringing awareness around it. Praying for ya!

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Thanks for chatting!

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