By now, most of you reading this story are well aware of the symptoms of CVS and understand the frustrations of a parent. Rebecca has all the classic symptoms and has had many admissions to hospital for IV treatment. This story tells of Rebecca’s journey from childhood into young adulthood and highlights some of the many problems that both sufferers and their families deal with.
Since the age of 4 months old Rebecca suffered regular ear infections, which caused her to have bouts of vomiting. She was given lots of antibiotics over the next few years. At age 4 she had grommets fitted and she was well until the age of 7. Between the ages of 7 to 10 Rebecca had a vomiting related illness on average 6 times a year. These were always explained away by our GP as a virus or a bit of gastroenteritis. I think the wake up call came one August weekend when, during one of these bouts she violently started vomiting blood. Rebecca was then referred to a consultant at the children’s hospital and was diagnosed with CVS at age 11. I often wonder if her early ear problems and constant antibiotic consumption had any link to her CVS.
Unfortunately during Rebecca’s 12th year her attacks became closer together, and she would vomit blood at the end of each episode, which often resulted in admission to hospital where she would receive IV fluids. During 2003 the attacks came every 1-2 weeks, causing Rebecca to have only 50% attendance at school. Because of her low attendance she was left all alone with no friends or support. As she entered year 10 (beginning her GCSE coursework) she was ill every week and was constantly playing catch up with schoolwork. Things did get slightly better in 2004 with an episode only once a month. Luckily Rebecca is a bright girl and still managed to achieve 4 Bs and 5 Cs in her final exams. Of this we are very proud and can only imagine what her full potential could have been had she had full attendance during these vital years.
After many tests we are still no closer to understanding the cause of this condition. However, an endoscopy procedure showed how damaged Rebecca’s oesophagus was. The Doctor was visibly shocked at the internal bleeding and severe ulceration. This has been treated with high doses of omeprazole and domperidone and the latest endoscopy showed a huge improvement.
People don’t always realise the impact of CVS on the whole family. Ours was falling apart last year. I have 3 other children, all of whom are younger than Rebecca and coping with her CVS has been difficult for all of us. Rebecca has been ill during our last 3 annual holidays and also, in turn, on each of our birthdays. She spent her own 15th birthday last year in hospital on a drip. The younger children don’t understand her condition and sometimes say nasty things to her like “you’ve spoilt our day again!” or “your bucket smells. Can’t you be sick somewhere else?” When their Sister is ill the other children get left out because, of course, Rebecca needs a lot of care and attention. To try and come to terms with our problem, we have had a course of Family Therapy. This gave us the opportunity to talk through our feelings openly and honestly. A lot of tears were shed but I believe it helped the children to be more tolerant and understanding towards Rebecca and each other.
Rebecca started college this September but she only managed to get there for 7 days out of the first term. Her attacks are back to every 1 – 2 weeks and are accompanied with severe abdominal, oesophageal, and lower back pain. I wish it could be me instead of her. It totally tears me up inside to witness what she goes through. The college has taken her off the register, because her missed work would be ‘irrecoverable’. This has totally destroyed her. She wants so much to be ‘normal’ and go to college where she enjoys learning. Rebecca now sees no future for herself and has become increasingly depressed. She is now 16 and going into adulthood. Where do we go from here? The children’s hospital is not willing to treat her for much longer and the thought of being transferred onto an adult ward is daunting.
A little light relief came a few months ago after our first visit to the Family Day at Birmingham Children’s Hospital. It was a fantastic day and I’d like to say a big thank you to Robin Dover and all the Committee members of the CVSA charity. We didn’t come away with any miracle cures but Rebecca really feels much more positive about herself.
We understood everything the doctors & professors said and could relate to all the other parents there. We could tell immediately which other children were ill, (they all have this pale, depressive look about them). The way one parent described her daughter was so like Rebecca it was scary. I asked her had she put a camera in our house. Just knowing that we’re not alone and Rebecca no longer thinks she is a freak is a great comfort. Rebecca managed to speak to some of the other girls there and has a couple of extra email addresses now. I hope she keeps in touch with them as we are planning to make an annual pilgrimage to Birmingham. If you haven’t yet made the trip to one of the annual Family Days I can honestly say it is well worth it. Everybody is really friendly, helpful and understanding and the children (although shy at first) made lots of new friends.
Thanks for taking time out to read Rebecca’s story.