Kelsey was 4ys old on 17th May 2004 when she had a very bad case of Tonsillitis. Then in August she began a strange and baffling illness.
AUGUST 11th 2004 stomach pains in her belly button and right side.
AUGUST 12th 2004 (now aged 5ys 2 months) she became ill with sickness unlike any other sickness bug, this was bile and contained no food. She had a high temperature a red patch on one cheek on an otherwise white face with dark patches under her eyes. She was sick constantly day and night and desperate for water (the colder the better) she dribbled into a bowl often and her urine was extremely cloudy and she lay without speaking not wanting anything or anyone near her to love or comfort her. After four days I took her to the doctors to be told it was a virus not to worry. I took her home and she stayed like this for another day. She was sick on the 5th day as normal but after one episode of sickness sat up and asked for something to eat! After 24hrs she was back to normal.
The same thing happened again stomach pains one day followed by the same symptoms. Again I took her to the doctors she looked so ill and was so unresponsive I couldn’t believe they told me again not to worry. Again on the 5th day she wanted food and began a speedy recovery within 24 hours.
All her episodes followed the exact same pattern and I knew exactly what would happen on each day. As the episodes continued they began to last 7 days by which time she would be bringing up blood and blood clots.
All the time her water was terrible so cloudy it looked like it was mixed with sand.
Eventually after pestering the doctors they agreed to send her to see a specialist. The doctor did lots of test and originally thought it was a kidney problem she had high levels of protein in her water when she was ill and increased white cells in her blood but all was ok when she was well. She had scans and tests but nothing showed up.
She continued to be ill every 4 to 6 weeks sometimes more regular she was missing school, holidays and parties and was very distressed about her illness. The specialist we had been seeing (who thought he knew what was wrong with her but wanted to watch and wait) left St James’s Hospital and we began a pillar to post situation of different doctors and hospitals. It was during a consultation that a doctor mentioned in passing a condition called CVS. I went home and via the internet found out about your organisation. I called the number and cried when I spoke to one of your members. She was the first person who really listened and understood. Through that call, I learned about Dr. Lindley at Great Ormond Street Hospital. We paid privately to see him and it was the best money ever spent. He saw Kelsey when she was ill in April 2006 and arranged for her to go to London the summer of 2006 she stayed for 5 days and had various tests to rule out other conditions. Eventually much to our relief she was diagnosed with CVS and we finally knew what was wrong with our little girl.
Kelsey started on cycles of Azithromicyin in April 2006 after her first consultation with Dr. Lindley and prior to her stay in hospital, as I had always maintained that her trigger was infection, (she never got anything else other than these episodes) as she was always ill when other children had colds sickness etc I also worked with children and was in contact with lots of viruses. In October 2006 we were also given a drug – Aprepitant (Emend) and Kelsey was transferred to Sheffield children’s hospital where they are now continuing her care.
After staring the antibiotics in April, her episodes became less frequent and she went from April 2006 to November 2006 without being ill. At this point we gave her the Emend and it reduced the attack to 5 hours. She was still off colour for 5 days but well enough to eat and play.
In between Kelsey complains of stomach pains regularly and has them most mornings and feels sick but the antibiotics seem to be working well (she has them 3 days out of every 14). I have also changed my job and things eventually seem to be getting better.
29th March 2007 was the latest episode and I gave the Emend immediately her symptoms started and she was well within 2hrs with no sickness at all. Again she was off colour for 5 days but well in herself.
I just wanted to summarise her illness and can’t go into every detail as it would be a very long letter but I WANT FAMILIES TO KNOW there are people out there who know what CVS is and how to treat it NEVER GIVE UP.!!!!!