Caron & Jack’s story
In March 2010 my son who was a healthy normal 7 year old became ill. He was vomiting a lot and had constant stomach problems, which we just thought was a bug he had caught from school. Then at the weekend I noticed his pupil of his eye was a cross instead of round, so I contacted the out of hours doctors who told me to take Jack to the hospital. I was obviously very worried at this point.
Jack spent a week in hospital having x rays of his brain, numerous blood tests, put on a steroid drip, saw several doctors and trainee nurses. I was asked lots of questions “ had he banged his head, had he fallen over” all questions answered no.
Eventually Jack was diagnosed with streptococcal meningitis and bilateral panuveitis. Our whole life and Jacks life changed. He was put on Prednisolone eye drops, 2 hourly Pred forte, atropine, Maxitrol drops and oral steroids.
Jack was a healthy child before and now he was vomiting had runs all the time and had severe headaches. It was awful to see my child who was so healthy become a child who couldn’t see and couldn’t keep food down at all. Jack had to visit the hospital once a week and have numerous eye tests. Eventually Jack was taken off the steroid tablets as he was getting bad side affects with them. I no longer worked as my time was spent being up in the night with Jack being sick and visiting hospital appointments.
Jacks who is a bright boy started to lose his confidence in school as he couldn’t see, he also now could not stand the light in the class and the brightness of the sun so he wore dark sunglasses all the time. His teachers were very good, they wrote his schoolwork out bigger for him and he started to use a felt tip pen for work instead of a pencil. The school contacted the education board and Jack is now called a special needs child and has a 1 to 1 teacher and gets books from the blind association.
Jack was eventually referred to Manchester eye clinic as his eyes were deteriorating and also a rheumatologist as he was having problems with his legs. We visited Manchester hospital every two weeks, which meant getting up at 6 o’clock in the morning and a long drive for Jack. I was always putting my hopes up for good news but most of the time the news was still the same and it meant me holding onto my tears till Jack went to bed.
We decided to take Jack on a cruise so we could all relax and enjoy the break. We checked with the doctors that this was ok they thought the break would do Jack good. Jack was very excited, but half way through the holiday Jack became very ill and I was confined to the cabin room. He stopped eating, drinking and couldn’t walk I couldn’t wait to get home. As soon as we were home Jack was back in hospital having more tests. Jack’s body does not fight off infection well and they think he caught a bug from the pool.
Jack was diagnosed as ANA+ and eventually put on methotrexate medicine, but Jack’s health after 4 weeks quickly deteriorated he became very sick and stopped eating. The doctors decided it was the taste of the methotrexate so put Jack onto weekly injections.
Jack has been on the methotrexate injections since November 2010. His first injection was at Alder Hey hospital in Liverpool where they had to give him gas and air as he got so anxious and upset. A community nurse now comes every Tuesday to give the injection to Jack and he seems to be tolerating it ok at the moment but looks very pale and his hair is going very thin and he is half the weight he used to be. He has now got bilateral chronic uveitis. We are visiting the hospital in Manchester and the ‘bone Dr’ as Jacks calls her at the end of February, so fingers crossed for once we will get good news.
We have fought this disease now for nearly a year this disease is a struggle for the family and the person who has it. It is not a disease I had heard of until now and it can be very scary. I’ve had a lot of down days with Jack with him crying in pain, not being able to walk as his bones ache asking me if he’s going to go blind and asking if he’s going to die.
Because it’s not a well talked about disease it can be a very lonely time. I made friends with Nicki (the founder of Olivia’s Vision) and she’s always there to lift me up, answer questions and give advice. We are now living day to day, as that is all you can do and have learned to take it as it comes. Jack has good days and bad days, there are days Jack is in pain and days he is ok. Uveitis is a serious disease.