Living with a child with Juvenile Arthritis
Rowena was diagnosed with JIA at two years old so we have not really got much experience of her not having arthritis.
The early years were a constant round of blood tests and hospital appointments, including the Eye clinic where she had routine checks for uveitis. She had occasional steroid injections in her left knee and some physio appointments to try to keep her strong physically. She had pain in many joints including her jaw.
Rowena developed Scoliosis in her teens and as a result she became weaker during this period and her arthritis became more of a problem. She needed stronger pain medications.
The long-term aim was to stop further damage to her joints, and so Rowena started sulfasalazine combined with methotrexate injections. Side effects and subsequent consultations suggest that this combination is not working. We await results of special blood tests to see if she can take the next drug ‘up’ and whether the consultant will agree to the cost!
Rowena has been planning to go to university for several years; she wants to study Psychology and is doing very well at college with her A levels. She has had to take an extra year to do them because of her drug treatment and its effects but if all that gets sorted out by the summer of this year she will then have her last year to improve her stamina and prepare for leaving home. Whilst I would love to keep her close to me and fear her leaving I also understand how co-dependent our lives have become and I really want her to fly the nest and find some independence.
Most of her early schools were helpful and understanding while she was young but less so as she moved onto secondary. The school eventually had to be told by her consultant nurse that she MUST do half days until her stamina improved and as a result Rowena achieved great grades in her GCSE’s.
In Hampshire we came under the lovely care of Southampton paediatric arthritis clinic, met other families, and went onto the Facebook support group, local and national. We have also been on a weekend away with other families and young people with JIA, so much information and all so new and amazingly enlightening.
My lovely daughter and her bright future keeps me positive. She gives me so much love and she brings joy to my life. Her outlook and plans for the future amaze me and make me so proud.