Carmel Clingain's daughter Victoria has juvenile arthritis
MY DAUGHTER Victoria was diagnosed with juvenile rheumatoid arthritis when she was 21 months old.
She just got up one morning and her right knee was swollen. I thought she had just knocked it, but her GP was concerned and sent her to Letterkenny Hospital for some tests. It was three weeks before she got out of hospital.
At first, the doctors thought she had septic arthritis but all the tests came back negative. We were very worried. It was a bad time for us. My mother-in-law was dying and we were going between two hospitals - Letterkenny General and the district hospital at Carndonagh.
Our reaction to the diagnosis of juvenile arthritis was disbelief. How can a baby have arthritis?
Once she was diagnosed, she was put on a course of steroids. She goes on them every time she has a flare-up and they knock it on the head.
When she is on steroids she can't go to school because her immune system is compromised.
Two years ago, 2006, was a bad year for her. She had three flare-ups and she was out of school for five weeks during one bout. When she has a flare-up, she has to rest.
Trying to get a nine-year-old to rest is very difficult, short of nailing her to the floor.
Victoria is in third class and will be 10 in May. She is doing very well at the moment. She has grown up with the condition and knows no different.
I am trying to make her more aware of her arthritis. It is her condition and she has to deal with it. She keeps a diary and marks down her different appointments and knows when she has to take her medicine.
She takes methotrexate once a week to try to prevent an episode. Her blood has to be monitored regularly because it can cause liver damage.
Victoria has factor-positive arthritis which is a nastier form of the condition, more like the adult form, and it is harder to get under control. There is always the chance that she will grow out of it.
When she has a flare-up she is in a lot of pain. Even walking can be quite painful. I know that she is not the worst case at all. Some children are wheelchair bound as a result of it.
Our lives are busy with all her appointments. Every month she has to go to her paediatrician, Dr McGuire in Letterkenny, to get her bloods checked. Letterkenny is a good 40 to 50 minutes up the road.
Getting the bloods done is traumatic enough. At times she does not want it done. The last few times it was a case of holding her down and she is a strong child. She also needs to go to an eye specialist every six months.
Every three to four months she also has to see Dr Orla Killeen, the juvenile arthritis specialist in Dublin.
We live near Muff on the Inishowen peninsula and, depending on the time of the appointment, the trip to Dublin can take up to five hours.
We usually stay overnight in a B&B because we find the return trip too long. Even if we split the driving, we are not back until 10pm and we have to get her up for school the next day. Plus we have two other kids at home - Christopher (7) and Alexander (11).
I could not fault the quality of service that Victoria has received. Every time she needed to be seen, she was seen.
However,the journey times are very long and it is disruptive for the whole family. We have to organise the other two and spend the day getting ready to go.
This week she had to have her bloods checked on Monday in Letterkenny, then down to Dublin for a check-up on Tuesday and then back to the orthotist in Letterkenny on Thursday.
I'd love to have a part-time job but it would not be possible to work around all her appointments.
It would be great to have a month of no appointments. It's a full-time job really.
I could not fault the quality of service that Victoria has received. Every time she needed to be seen, she was seen