My son Jonathan has an intermittent form, in fact only 8 episodes in 10 years. His first attack was in April 1996 when he was 10. He was hospitalised but no one knew what was wrong and, although he lost nearly a stone in weight, he recovered quickly. Another episode followed in September 1996 and the doctors then diagnosed cyclical vomiting as the most likely explanation. Again, after 3-4 days in hospital, he was soon well again.
Further attacks occurred in Sept-Oct 1997,1998 and 1999. They were all very similar, severe, uncontrollable vomiting resulting in haematemesis, dehydration and low potassium levels and he was always treated with intravenous fluids and antiemetics (usually Maxolon). As usual, he was back to normal after a few days, a happy lad who enjoyed school and with a lot of outside interests as well as a wide circle of friends.
There were no further episodes in 2000 and 2001. We thought he had grown out of this problem. He was growing fast, and his appetite had increased enormously. Then, in October 2002, just after he had completed his GCSE’s and moved into the 6th form, we went to Majorca and we had been there about a week when he suddenly had a severe attack of vomiting. He started to bring up blood so we had to take him to the local hospital where they were very good. He was put on fluids as usual and was just about well enough to fly home after 3 days. We had a letter from our own hospital that had told the doctors in Spain what Jonathan could suffer from, but they thought it could have been triggered by gastro-enteritis, as he had also had some diarrhoea. In fact, attacks generally always seemed to have been preceded by some minor virus infection.
2003 and 2004 passed without incident. Jonathan gained A grades in his ‘A’ levels while at the same time working every weekend to earn some extra money, and he gained a place at Cambridge to study Geography. He started the course in Oct 2004 and settled happily into University life.
In July 2005, he set off on a 6 week backpacking trip around Europe with friends he had met at University. It only lasted two days; he was taken ill in Rome and ended up in hospital there. Luckily, he had his hospital letter with him and he was treated promptly and expertly. The doctors there were concerned and wanted to do all sorts of tests, but he decided to fly home as soon as he was well enough to travel. He was disappointed that his trip had been aborted, but after a few days of convalescence he was well again.
Jonathan’s second year at university was without problems and he now had a serious girlfriend as well, so all was going well as he started his final year. But on this last Christmas Eve, another very severe attack occurred and he spent all the festive period in hospital, 5 days in all. Although Jonathan underwent a lot of tests and investigations when he was younger, nothing abnormal was ever found, but now his doctors think he should have some further tests now. He agrees with this because he would like to do some travelling, but the way things are going he would never get travel insurance.
I realise that our experience of this condition is relatively minor in comparison to some of the cases I have read about in the newsletter, but the episodes are very frightening for the patient and those caring for them, however many times they happen. We can only hope that the research into the illness will produce some answers to the treatment and prevention of this condition.
I find the newsletter very interesting. Details of ongoing research are well covered and it is reassuring to hear that you are not the only person in the world who has had to deal with this problem.