I thought I might share my experiences with other sufferers. My daughter Lois had her first episode of CVS at the age of 3. They occurred every 3-4 months, lasting 24-48 hours. Despite trips to the GP, his response was children do vomit, no need to worry. As a family we could not understand this; none of our friends’ children suffered. I returned to the GP and asked for a referral to see a paediatrician, reluctantly he agreed, adding it would be no use.
Lois was seen in 2003 at our local hospital and diagnosed with CVS. A letter was produced which gave her direct admission to the children’s ward if we were concerned. We by now were used to her episodes and thought we coped well, until August 2004, when she was admitted for 2 nights; I/V Dextrose/saline and then potassium were needed.
Another year passed with episodes and then she was admitted for 4 nights in October 2005, January 2006 (4 nights) and February 2006, (4 nights). Although we were happy that Lois was given direct admission to the ward, we were getting no answers.
Through a friend we went to see Dr Chong, medical adviser for CVSA, privately, who answered our questions, did not rush a detailed assessment and examination. His preliminary findings suggested CVS. He needed to do further tests, bloods and ultrasound which have come back normal. He has commenced her on propanolol, and ondansetron, which she takes for the first 48 hours of the episode. She has only been taking the propanolol for the past month, so we wait. It has been an extremely difficult time. Lois has a brother who appears to handle her sickness. We encourage him to visit her if she is in hospital. When she is ill he is not his usual boisterous self with her.
During her last admission to hospital Lois was really low, uncommunicative, pale, holding her saliva, too scared to swallow in case she was sick. It is an extremely stressful time. It is good to know that CVS is becoming recognised. As a nurse myself, I can understand attitudes from medical staff, but it shows me there is a gap in their knowledge. Sometimes they just do not know, other times they do not wish to know. When Lois is admitted to the ward I get the feeling of raised eyebrows, “it is not her again”. Mutterings of “she needs to be motivated”. This is a lack of understanding. I know my own daughter and yes I get upset, but in-between times Lois is a happy 7 year old, with outside interests. You would not know she had been ill, apart from the weight loss. Anyone would feel down with this illness. I am so relieved to find the CVSA. I have found all the information so useful.