Help with juvenile idiopathic arthritis

13 March 2019

Sometimes in life we face challenges and experiences that take us out of our comfort zone and as we progress through these, frustration, tears and trials can lead us to dark places.  These dark places are hidden from the outside world as we go about our daily life, unbeknown to others, we carry the weight of the world on our shoulders.  

Going back a few months my life was plain sailing (well as much as it could be), Gee was diagnosed with autism and OCD and I had everything in hand.  As I look back over the last 7 years, we had many trips to the hospital with injuries to joints and were told there was nothing wrong with Gee, professionals assumed she had a low pain threshold.  After numerous x-rays and MRIs, in November we saw a great consultant who was not happy with all these visits and decided we should go to see the rheumatology team at Sheffield.

Since November’s visit to rheumatology  we have been inundated with appointments with the multi-disciplinary team who have diagnosed Gee with Poliarticular Juvenile Idiopathic Arthritis.  Treatment started almost straight away with daily visits to the hospital for IV steroids to try and dampen down the inflammation and although this helped a little, it was felt she needed more treatment.   Needless to say the side effects of the drugs she is taking are horrendous, I feel so bad injecting her on a weekly basis with a substance that makes her feel so poorly and although we have anti-sickness medications things do not seem to be settling down at all.

Tuesdays are always a bad day as it is the day of her injection and as we lay in bed last night, she turned to me and said “if I was an animal they would put me to sleep”.  I feel so helpless, how do I make things right for her, I know for the rest of the week she will feel lethargic. I just want my daughter back and I’m beginning to wonder if the treatment is actually worth the price she is paying by suffering.  I pray for the weekend to hurry up because those are the only days she feels like doing anything.  

My blog has taken a back seat whilst all this has been happening but I would love to hear from any other parents who have or are going through this awful illness with their children.  Any tips would be greatly appreciated in helping Gee to overcome some of the barriers she is facing.

Update: we have to stop the current medication until her next review in a couple of weeks. I must say the whole team who are supporting her are amazing, very supportive and nothing is too much trouble.

So many changes in such a short space of time and all this ties in with a house move and new job. I must be mad and not to forget our new kitten Luna, she is so regal.

Roll on the warmer weather when we can get outdoors more and hopefully Gees health will have improved a little. 

1 comment:

  1. Hi Cathy, I recognised your name as I volunteer with Juvenile Arthritis Research so took a peek at your blog and saw this. I think we already follow each other on Instagram so do message me if you want to chat as we've been on this horrible jia journey for the past 5 years and I myself had it since the age of 10. Sending big hugs Xxx


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