2.02.2012

Cyclic Vomiting Syndrome....Not Such a Pretty Title

My daughter had an episode of Cyclic Vomiting Syndrome last night.



She is eight years old and was diagnosed with this unforgiving syndrome at the age of three; although we can trace it back to infancy.

Cyclic Vomiting is recurrent bouts of vomiting. It is thought to have a connection to migraines, and is often referred to as abdominal migraine. Many of the children, ( and adults), experiencing this syndrome have a family history of migraine, (as does my daughter).

CVS episodes are often times triggered by stress ...even good stress, like Christmas, the first day of school, or a birthday. Certain foods, like cheese, chocolate, or foods containing MSG can also be triggers. Other children (like C), are called "Calendar Kids", because they don't seem to have a particular trigger, other than time. C's episodes used to be 8 weeks apart. Not 7 weeks, 6 days...but 8 weeks to the day. Yes, we would put it on the calendar, and wait for it. Cal's episodes are now somewhere between 10 and 11 weeks apart. Yes, we are still able to put on the calendar and watch for it.

Because we know it is coming, we prepare ourselves: hair elastic, throw up bowl, water, tissues. I sleep in C's trundle so that I am right there for her. She stays in bed, and tries to fall asleep in between...although the stomach pains and nausea can sometimes prevent this.

We're "lucky" compared to other families experiencing CVS. Some children vomit so violently, and often that they frequently end up hospitalized. C has terrible vertigo the morning an attack is coming, is then fine all day...and once she falls asleep that night, the vomiting begins. It usually happens once an hour for the entire night. Once morning arrives, the cycle is broken. C has vertigo for 2-3 days, and then another 10-11 weeks pass before another episode. Some children have episodes that last for days.

C was diagnosed with celiac Disease in May. After 9 months totally gluten free, we still do not see a connection between Celiac and CVS, although we had hoped to.

CVS is still not a well-known syndrome. I have found it in medical books from the 1800's; however, you rarely hear anyone speak of it. We need someone like Ellen Degeneres to get the word out there. There has to be some hope of treatment for the future for this mysterious illness.

Click this link to read more or to make a donation to a worthy cause.

www.cvsaonline.org

6 comments:

  1. Oh, my. Every time I see your post on this I am so sad. My prayers go out to you and your family. You are well aware of my family's connection to migraines (although not CVS), so I 100% get it. In fact, I watch my own babies like a hawk so I don't miss any signs of their own pain (which they may not get for a few years yet, my earliest migraine was at age 7).

    It is so smart to have a trundle in her room, perfect solution so you can be there right by her.

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    1. Thanks Dina...I was just peeking at that cute belly of yours this morning! I appreciate your words of support :)

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  2. So awful. Poor baby. It's hard having a child who deals with a chronic illness. My C has a "syndrome", too. A friend told me a long time ago, "This is part of his story" and it struck me. I'm just here to help him along with it, but God allowed this for him for a purpose and as we know, God never wastes pain.

    Hope today is looking up. :)

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    1. That's exactly what I tell her! God knows you are strong. She told me once God should let her live to 1000. When I asked her why she said...hip brace, helmet, CVS, and Celiac....my answer was I think you are right! Your kids are so sweet.

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  3. I agree.....we need to get the word out! There maybe families that are suffering and don't understand. Thank you for posting this.

    blessings,
    karianne

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    1. I agree! Chandra Wilson from Greys Anatomy(Dr Bailey) has a daughter with it. She is the first celeb I have heard talk about it. Thanks.

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