Meet the patients: Charlotte
Our little girl Charlotte was diagnosed with juvenile idiopathic arthritis in January 2013 when she was 16 months old. In December 2012 she had been very poorly with various viruses and my husband and I noticed that she was walking with a stiff left leg and sometimes a stiff right leg. I went to the doctors on about four separate occasions in December 2012 and each time I pointed out that I was concerned about her stiff legs, as she had been walking perfectly before her first birthday. Each time the doctor told me not to worry and to concentrate on getting rid of the virus.
Christmas 2012 was awful, Charlotte was not her happy, cheerful self and sat crying and wanting cuddles from only mummy, no one else would do. It was like having a new born baby again, she was up constantly during the night crying. Charlotte's walking deteriorated to the point that she stopped walking and even crawling altogether. She would just sit in the middle of the room and point to toys. Charlotte has a cheeky character and would normally help herself to anything she wanted, sitting and pointing was therefore completely out of character. She was very sullen and not happy at all.
In the New Year I took Charlotte back to the doctors, as my husband and I knew something was wrong. A locum doctor was on duty and we explained what had happened over the last month, she immediately called Salisbury Hospital and said to go home and she would call me later. By the time I had got home, Salisbury Hospital was on the phone telling me to bring Charlotte to the hospital immediately. After various tests the doctor told me that she believed Charlotte had arthritis and an appointment was made for the following week for me to see a specialist. The specialist confirmed our worst fears that she had arthritis in her knees. My husband and I were devastated with the news.
Charlotte did not walk for four months despite being prescribed anti-inflammatories and having hydrotherapy. Charlotte hated taking her medicine; she is the only child I know that does not like calpol, so giving her the medicine was a nightmare as she would spit it out or not open her mouth. At the beginning we had to bribe Charlotte with a chocolate button after each and every dose.
We then met Dr Leahy from Southampton Hospital and after checking Charlotte’s joints it was discovered she also had arthritis in her elbow and her hands as well. This was a further blow for us.
In April 2013 Charlotte had steroid injections in her knees, left elbow and her middle fingers. Five days later, Charlotte took her first steps again. I cried with delight. We had to teach Charlotte to walk again. Unfortunately she started to walk with a stiff left leg again and it was decided in June 2013 that she should have methotrexate to control the inflammation and to avoid joint damage. I found it very hard to accept that she needed to go on methotrexate. I could not accept that a 22-month old child should be given such a powerful drug that could cause nasty side effects. It would also mean that Charlotte would need to have blood tests every two weeks for the first three months of taking the medicine. Eventually after many tearful conversations with my husband and Sarah, the paediatric rheumatology specialist nurse, Charlotte was prescribed methotrexate. We were warned that methotrexate did not taste nice so we add it to a cup of tea. Every Saturday night, the three of us sit down and drink our tea.
This year has been a whirlwind of hospital appointments nearly every week with appointments with the JIA specialists, blood tests, physiotherapy and the eye clinic. It has also been a roller coaster with emotions with tears, anger and disbelief. Throughout this Southampton Hospital has been fantastic and in particular Sarah has been there to support and guide us and provide tissues for the tears!
Until Charlotte was diagnosed with JIA we had never heard of it and when we have told friends and family of Charlotte’s condition the first response is surprise that children can have arthritis.