Hi,
Thank you for updating us , it is very interesting to read, as we are just starting our path.
My daughter has been through the mill a bit, she was diagnosed at 5 with leg-calve perthes disease and has had numerous operations, she had a full hip replacement at the age of 17.
In the October before the hip replacement in December, she was in and out of hospital for about 2 months and was finally diagnosed with onset adult stills disease. Which meant more medication and hospital visits. She was put on methotrexate (which is a form of chemotherapy) and it worked for a while, until September last year when the flare ups returned with a vengeance. Her CRP & WCC was through the roof and she spent 3 weeks in hospital.
It was then discussed that she may have periodic fever syndrome. We was referred to the Royal Free and the appointment seemed to take for ages to come through, all the while the flare ups were coming thick and fast.
We were seen at the Royal Free, and I have to say I was really impressed with the set up. Everyone was so friendly and had time to listen to you. She is under Professor Hawkins who is so nice, caring and was ready to listen to us.
Monday last week she begun feeling ill, she went to the GP who gave her antibiotics, by Tuesday she wasn't any better in fact a tad worse, so I took her back they gave her more antibiotics, by Thursday she was in hospital having all different types of drugs and once again her CRP, WCC were through the roof, her LFT and KFT were abnormal. We were seen by the rheumatologist who said that its all down to her auto inflammatory disorder - as yet they are unsure what one she has! although FMF has been spoke about as well as a few others!!!
She home now thank goodness but we are back at the hospital today for more blood tests and seeing the doctor again.
They have mentioned that they will be putting her on some daily injections but I'm unsure what they are.
Sorry I went on a bit, but this is all new to me and I have no one to talk to who understands what my daughter is going through and how worrying it is for me as a parent.
My son has just beat cancer after 3.5years, and there is so much support help and guidance but I feel so lost dealing with this!!
All the best
Best regards
Kirstie