Charley’s arthritis journey

Early symptoms and trips to A&E

Just over a year ago there was a bit of a bump in our lives, literally. Charley was 2 1/4 and Bodhi was about 3 weeks old. Charley fell out of her big girl bed in the middle of the night and was sat on the floor crying. We put her back in bed and she went to sleep and we thought no more of it for a few days. A few days later and Charley started limping and had a slightly warm, swollen knee. We just thought that she’d twisted it falling out of bed and that we’d keep an eye on it. We spoke to a pharmacist who suggested giving Ibuprofen to ease the swelling.

The following week we were on holiday in Woolacombe. As we walked around the local towns Charley was happy to sit in the pushchair which was unheard of and just didn’t seem like her at all. On the Tuesday she was unable to weight bear at all in the morning and we decided that we should take her to the doctors. This was the start of the frequent trips to doctors, hospitals and A&E over the summer months.

That day we started at the Minor Injuries Unit, followed by the doctors at 5pm and then as Charley was a little one they suggested going to A&E where she finally had an x-ray done however, this didn’t show anything up and it was recommended we go back to the A&E fracture clinic on the Thursday. In the meantime we spent some time on the beach the next day but Charley wasn’t happy and wanted to go home which was out of character.

The fracture clinic thought it could be a toddler fracture which can’t always be picked up on an x-ray. It was a wait and see, putting a cast on it wouldn’t help.

Back home the following week and we went to our doctors as Charley is still limping. The doctor suggests getting more x-rays done at the hospital at the end of the week. X-rays still don’t show anything. If it had been a toddler fracture there should have been calcification around the fracture area and nothing like this was showing up.

Back to the doctors (3rd week of limping) who puts a call into orthopaedic team at hospital and later that day we get a call saying go to A&E where they will assess Charley again. She had blood taken but nothing was jumping out at them in the results and it made me think I’m going mad, even though you can clearly see something is wrong. An appointment with the orthopaedic consultant suggests that it is nothing serious and she’ll get better! However, that night Charley had a really bad night, with a high temperature and she was obviously in pain. When she woke in the morning she didn’t seem to be able to move her body at all and poor thing couldn’t walk now or use her right arm much.

So into the 4th week of limping and now not walking. On the Monday we were back in A&E. Another x-ray of right arm but not showing anything and I still feel like I’m going mad. Body is still small and needs breastfeeding constantly so thoughts like is Charley doing it for attention pop into my head but then I remember she is only 2 and couldn’t keep this up for that long. Then I feel guilty for thinking it.

MRI day

The orthopaedic team has previously mentioned Charley having an MRI but it’s not very nice as due to her age she will have to have a general anaesthetic but nothing is jumping out and we need to know what is going on so she is booked in to have one on the Thursday.

MRI day
MRI day

 

Charley is not allowed to eat after 7am and we have to be at the hospital at 11am. She is a star though, doesn’t moan too much about not being allowed to eat and finally gets taken down for the MRI around 2pm. She had to lay on top of me while they put the gas mask on her which she fights a little. Its horrible seeing her little body going off, not being there with her as this big machine scans her body. It takes forever it seems to get the call that she is awake and I can go and get her. However, she wakes up from the anaesthetic really distressed and I struggle to carry her back to her hospital bed. Finally, she falls asleep for quite a while. Its a long day and we just want to go home. Again, from initial results nothing has jumped out at them. Again, no definitive answer and we are referred to the paediatric team.

At this point we have started giving Charley ibuprofen and paracetamol each twice a day which gets Charley moving again. Charley had been unable to walk for nearly 2 1/2 weeks.

Finally a diagnosis

We finally saw the paediatrician in the middle of August. I started carrying Charley into the assessment room but the paediatrician told me to let her walk, at which point I wanted to yell “but she can’t”. However, she was a little intimidating and so Charley had to walk in and I really wanted to grab Charley and go home! However, the consultant was lovely and told us that she suspected it was juvenile idiopathic arthritis. Arthritis – don’t only elderly people get that?? Apparently not. The consultant could see that I was a bit upset at this and positively told me they had a young patient who was a successful ballerina and there was lots of help available.

There was a lot of information to take in and we were given a heap of pamphlets to read through.

JIA pic1

 

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