My daughter, Sarah, has had CVSA now for 18 years it started when she was about 4 years old; it took me years to get the doctors at the hospital to take notice. No one had ever heard of CVS. By the time I had rung the GP’s then taken her to see him or her, then gone on to the hospital and explained things there, Sarah would be very poorly.
In the end, after many years, I got a folder. I went to the doctors and asked them to do me a letter about Sarah; this went in the folder. Then when we went to see the specialist he too did me a letter telling the doctors what they must do if Sarah was admitted to hospital. I put this in too. I also carry a leaflet all about CVSA, which I show to the doctors explaining all about CVSA, so that at least – if they have never heard of it – there is an explanation of what I am talking about.
When Sarah is admitted to hospital now I ring the doctors explaining that Sarah has started to be sick. They then ring the hospital to let them know that Sarah will be going in. She is then put on intravenous fluids with 5% dextrose, given at a rate of one litre every four hours. This has been the best way to treat Sarah. Where she used to be in hospital for days, Sarah can now sometimes come out of hospital the next day. I think that if sufferers can get treatment as soon as they start to be sick it is much better for them. I once read about dextrose energy tablets in one of your newsletters and Sarah tried them. They are certainly worth trying when people have the signs that they are going to be sick; sometimes they have stopped an attack.
Sarah is now 22; she has not been sick now for 15 months. At least she goes longer now between attacks than years ago. She used to be sick every six weeks when it started, then there was a bit longer interval, and then it went down to twice a year, before reverting to every six weeks again. Touch wood she has not had it now for 15 months. This treatment works for Sarah – it’s worth a try. We have tried too many things to mention, but in Sarah’s case this works.
Please tell people that they are not alone. Keep up all the good work that you all do.