Click on here to see an updated sample.
as of May 26, 2014 see the table of contents and 2 selections.
Send me an email submission to rarebutnotalone@gmail.com or follow our progress on the project at https://www.facebook.com/cvsmom
Or join out support group at Rare But Not Alone A closed group for sharing.
Keep on the look out early fall 2014 on Kindle Ebook!
Colleen
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Rare But Not Alone Raising Kids With Cyclical Vomiting Syndrome
It's never fun when your child end up with a stomach virus and throws up all over the place. Now imagine it happening for days on end and nothing you can do to stop it. The vomiting continues long after all the contents of the stomach have been expelled. Ok, if this was once or twice a year you'd expect to be just a part of being a parent. However your child does not follow that pattern and throws up the same time of day in a clear pattern that you have come to be able to predict. You know your child has more than just the stomach flu, you a parent know that there has got to more to this. This can't be normal. And it's not.
Cyclical Vomiting is a rare migraine variant that many medical professionals know little about, but that's about to change. No longer will parents have to accept the diagnosis of it as anything more than "stomach virus". No longer will parents be dismissed as crazy or over exaggerating about how many times our children vomit in a given hours which is often more than 10x. Until they watch it for themselves in the emergency room or pediatric floors world wide. We are but we are not alone and we are speaking out about the reality of this condition.
Rare But Not Alone, tells the stories of real families of real kids living with cyclical vomiting. It focuses on the many different paths the lead us a diagnosis, creative ways to ride out the storm of a cycle and how to maintain a healthy attitude about it. We discuss the question of education to homeschool or public school and how to advocate for your child to get the help they need to continue to grow and learn. Another area of concern is how to better advocate for your child in the hospital, when to go to the hospital and reassure them that most kid do outgrow this condition at some point. We also share stories of the joys and challenges that families face together as well as what we can do to help siblings The Sky is the limit for CVS kids. They often do reach their goals and do some pretty amazing things.
Though friends and family members probably have never heard of it. We are finding support thanks to the vast resources of the internet and social media networks. We are often told it's all in our heads, a mental condition, or just the result of poor parenting. Parents now are able to have easy access to vast amount of research at their finger tips that other generations before could have only dreamed about. There is a name to this "puke monster" as many have called it. Equally important to the name, there is treatment options to better manage the condition.
We are raising awareness within our community, and in the world saying that CVS is real. Our children will hopefully not face all the accusations of it being a behavior problem or mental issue as other generations were often told. Together we will educated the world of CVS by telling our stories.
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