Lucy's CVS Story about her daughter
My daughter Isabella is 4 years old and battles with CVS – Cyclic Vomiting Syndrome.
I had never heard of CVS until her diagnoses at age 2. Isabella’s diagnoses came after she suffered through a horrific 14 day episode. Constant vomiting with severe stomach pain – something that had almost become routine for her. We visited the GP twice that first week and were told both times it was a ‘nasty stomach bug’ and we were given Pedalyte and told to keep a close eye on her fluid intake. The same advice we had been given the previous 6 times we had visited in the two and a half months before this (like most people and parents of sufferers, misdiagnoses seems to be a common trait for weeks/months, and sometimes years before being diagnosed). I knew it was not a stomach bug and on the 6th day when she started to vomit blood I took her into the Emergency Room at our local hospital and said I was not leaving until they could tell me what was wrong with my daughter. She was admitted that morning and spent the next 8 days going through all types of tests and procedures whilst trying to keep her hydrated and alert. When we finally received her diagnoses, I knew that this would become a new chapter in our lives.
Two years on I have learned the ins and outs of CVS, Isabella’s triggers (Other sickness, anxiety, overtiredness, excitement, over exercise and strangely enough cheese!!), procedures in place to help abort an episode when possible (Medication, tempered showers, fresh air, sleep), what medications she needs to help alleviate an episode (Ondansetron, Panadol/ibuprofen) and her daily medications to help keep the episodes under control before they arrive (amitriptyline, domperidone).
Isabella’s CVS is currently under some control. We just experienced a two-month CVS break which is the longest time she has been vomit free since she was 16months old. She now holds a ‘blue card’ for Christchurch hospital which gives her instant admittance into the Children’s Acute Assessment Unit which is a bittersweet relief.
Overall the most important thing I have learned since her CVS diagnoses is just how strong, resilient and brave my beautiful girl is. CVS can be debilitating but you can help yourself and others by spreading the word on this condition. With more knowledge comes more power!!
Thanks. Lucy – Mum to the bravest girl I know!!
I had never heard of CVS until her diagnoses at age 2. Isabella’s diagnoses came after she suffered through a horrific 14 day episode. Constant vomiting with severe stomach pain – something that had almost become routine for her. We visited the GP twice that first week and were told both times it was a ‘nasty stomach bug’ and we were given Pedalyte and told to keep a close eye on her fluid intake. The same advice we had been given the previous 6 times we had visited in the two and a half months before this (like most people and parents of sufferers, misdiagnoses seems to be a common trait for weeks/months, and sometimes years before being diagnosed). I knew it was not a stomach bug and on the 6th day when she started to vomit blood I took her into the Emergency Room at our local hospital and said I was not leaving until they could tell me what was wrong with my daughter. She was admitted that morning and spent the next 8 days going through all types of tests and procedures whilst trying to keep her hydrated and alert. When we finally received her diagnoses, I knew that this would become a new chapter in our lives.
Two years on I have learned the ins and outs of CVS, Isabella’s triggers (Other sickness, anxiety, overtiredness, excitement, over exercise and strangely enough cheese!!), procedures in place to help abort an episode when possible (Medication, tempered showers, fresh air, sleep), what medications she needs to help alleviate an episode (Ondansetron, Panadol/ibuprofen) and her daily medications to help keep the episodes under control before they arrive (amitriptyline, domperidone).
Isabella’s CVS is currently under some control. We just experienced a two-month CVS break which is the longest time she has been vomit free since she was 16months old. She now holds a ‘blue card’ for Christchurch hospital which gives her instant admittance into the Children’s Acute Assessment Unit which is a bittersweet relief.
Overall the most important thing I have learned since her CVS diagnoses is just how strong, resilient and brave my beautiful girl is. CVS can be debilitating but you can help yourself and others by spreading the word on this condition. With more knowledge comes more power!!
Thanks. Lucy – Mum to the bravest girl I know!!
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