Rare But Not Alone:Raising Kids with Cyclic Vomiting Syndrome

I have CVS and have been diagnosed for 8 years. How validating to read what could be my own thoughts and feelings through the voices of so many others like me! This book is well researched and beautifully written from the perspective of a CVS sufferer AND the mom of a young boy with CVS. It is full of information, insight, and inspiration for sufferers of CVS and their caregivers. Thank you Colleen, I loved it!

I found this book on a fb support group for cycling vomiting. My daughter was recently diagnosed and I'm grateful to know I'm not alone!

This book was not only a source of support for me but also helped me with understanding my sons condition and learning what has worked for others when it comes to trying to control cvs.

I am a mother of 4 children. My 7 year old daughter, who is my youngest, was just diagnosed with CVS after she was hospitalized for the third time in 3 months. She has been sick on and off for the past 9 months. We had been given many other diagnoses before CVS and were becoming very frustrated as to why no one could help our daughter. I had never heard of cyclic vomiting syndrome before her diagnosis so I started doing a lot of research. I am so glad I found your book! I have not finished the entire book yet but can relate to many of the stories that have been shared. I feel a sense of calm knowing there are others out there that have the same disease and how they are helping their children live their lives without the disease controlling it. Thank you for sharing your story and I hope it helps others as it has helped me!

This book is a lovely compilation of stories of experience from those who know it too well; the patients and their families. As mom to a daughter with CVS, we have experienced so many of the same delays in diagnosis, confusion in the ER about how to manage her, and an ongoing search for answers and better treatment options. We have also experienced a few remarkable health professionals who have walked alongside us, working with us to improve her quality of life. We both read this book and thought about how much a book like this would have helped us understand what was going on over the past 25 years. While this book drew attention to some of the research on CVS, I would love to see a second addition or another book that brings patients together with health care practitioners who 'get it' and who can collaborate on ways to support patients and families as they navigate the often frustrating health 'care' institutions. I would like to thank Colleen Rice and all of the patients and families who shared their stories of experience; you have much to teach both patients and health care professionals - as well as the insurance companies whose attention to the economic bottom line in the absence of understanding an illness that is poorly understood it requires doctors to prescribe "off label" While patients will find this book resonates with their experiences, it would be wonderful if health care providers, policy makers and insurance professionals could read about the people that they meet in the ER or on paper. I think they would be surprised at how resilient and strong they really are. But they need our help, and this book offers insight into what it is like to live with CVS.

For years I researched. For years I questioned our child's diagnosis. For years I tried to explain it to our family & friends. It was so difficult until I found this book. I had a diagnosis at this point but this book is like reading the story of my life. It helped me to put into words for family. It helped me by knowing others were out there and that I wasn't alone. It's a great easy read and worth every penny. Actually, priceless.

What an awesome book with great information! This book should be a staple resource if you or someone you care about suffers from CVS. Not only is there science and related data included but also lots of real life stories and references that give the book a very comforting and personal touch. I highly recommend this book for anyone who is need of information or is curious about living with CVS.

I loved this book! My daughter suffers from CVS. It was so nice to read all the stories and feel like we are not alone. I wish we had this when she was small. It is such a difficult disorder. It has been a long journey and very difficult. This book explains it all. Thank you Colleen for writing such an informative book.

This book explains the difficulties of CVS for sufferers and also people close to them

I purchased this book while going through a very bad time with my daughter's health. I felt completely defeated and ignored by health professionals and I am so glad I found the book as straight away I felt less isolated and confused. It gave me the knowledge and insight I needed, to understand the condition and what I could do next. It has been invaluable to me. If you have a child with CVS, it is a must read.

fantastic book to read if you are a parent going through CVS with your child, my daughter is 10 & had this since she was 3, after reading the part about 10 things your child wants you to know brought me to tears cause there is a few things that I do & didn't realise how they feel. It's worth every penny. thanks for writing this book Colleen.

Cases discussed are too informative and provides understanding of lived experience.

Thank you for bringing this out in the openGood luck