About a Girl

CVS has been part of our family life for the last six and a half years

It all started with what we thought was just a bad case of an upset stomach, but the vomiting just did not stop, so we decided to take our daughter to the family doctor. Our GP was away and a “stand in” said that the symptoms should clear up any time on their own. She said our daughter was not dehydrated, so we thought nothing more about it. As I was at work, my wife brought our daughter home and left her with her own mother, while she went to get some ice-lollies so that she didn’t get dehydrated. When my wife got back from the shop, she found our daughter had been taken to hospital by ambulance, as she had “fitted” and was dehydrated – all within 30 minutes of seeing the doctor. Things just went down hill from then on.

Soon the hospital was becoming our second home; my wife stayed in hospital with our daughter and I tried to work as normal. My mother-in-law moved in to help look after the other two kids, to get them off to school and be there when they got home. We would have something to eat, then go and see if there was any improvement in our daughter’s condition. Nobody seemed to know what was causing it. When she was better we were able to take her home, but by the time she was back at school she was ill again. She would be back into A and E, put on a drip again, then a bed would be found for her on the children’s ward. Most of the time it was after midnight when the vomiting started. The most worrying thing was not so much that she was ill again, but what was causing it. Was it food, pets, trouble at school/home? Nobody knew.

Over the next two and a half years she spent half the time in hospital. Many tests were done. We were on first name terms with all the nurses; they did not know what was wrong with our daughter either. She would curl up on the bed, did not like bright lights or noise, and her sleep pattern was extended. She would try to get water when she thought nobody was watching, even though she was attached to the drip. Each time we had to ask for a single room where the taps could be turned off, so she could not get any water, as she only brought it up as soon as she swallowed it. Many anti-sickness drugs were tried and tests were done over the two and a half years. She even travelled to Great Ormond Street Hospital by ambulance, while she was vomiting, to see what they thought might help.

It was around this time our local House Doctor asked whether we had heard about CVS and gave us a website address. This was the first time we were told what they thought it might be, and why all the tests had been done to eliminate anything else. It was like having a great weight lifted off our shoulders, knowing that it had a name after all. I would like to say that things started to improve now, but that would be a lie. The illness meant my wife could not go out to work, because nobody knew when the next episode would be; it might be late at night or on the way to school by bus. As my daughter would not speak during an episode, she would pass her mobile phone to her older sister to ring mum, to tell her to come and pick her up in the car and bring a bowl, just in case she did not make it back home before she started vomiting.

After many hospital trips and the odd argument with the doctor we decided to deal with it at home. Her older sister moved downstairs and we take it in turns to look after her. As soon as she is well and eating, it’s back to school as normal – until the next episode – and so on.

This illness affects all the family. Our other kids don’t understand why she needs all the attention and why we can’t go on holiday. We’ve missed days out, birthday parties even Christmas sometimes. You cannot plan anything or tell anybody about plans, because they might not happen. This avoids disappointment for all that know. Not all times are bad, however. We bought a tent so that, if things are all right, we can load up and go away for a couple of days; if not, nobody is any the wiser. This prevents putting extra stress on our daughter and stops her blaming herself because we hadn’t gone somewhere we’d promised. Even though we don’t take her into hospital when she is ill, we know we can still have regular appointments with our local consultant and one in Surrey. Tests are still being done even though it’s now six and a half years on, as one of the tests may have the answer we are looking for.

Remember you are not the only family in this position; don’t give up without a fight to get to the bottom of this. When one door closes another one opens and you will get through this. Finding the CVSA website was one of these doors. Talking to others in this position, parents and sufferers, and meeting specialists from around the world, helps to put this puzzle back together.

P.S. Never give up; a cure may just be through the next door.