Our daughter is two and a half, and is currently being seen at Great Ormond Street Hospital due to reduced movement in her neck which was noticed when she was around a year old.
We were originally seen by our local health services and her physio referred her to GOSH as he thought the sternocleidomastoid muscle in her neck was too tight.
After an MRI, X Ray and CT scan, we have now been told the C1 and C2 vertebrae in her neck show Rheumatoid Arthritis. We totally didn't expect this at all, and they haven't told us any further information and are now awaiting referral to a rheumatologist. (She also showed a large Syrinx on her spinal cord, however they did not see this as a problem?)
I feel this was completely sprung upon us without any information being given about what lies ahead. We have tried looking online however the world of Google is very frightening so decided to stop looking. I've already established that the C1+C2 vertebrae are the worst ones to be affected
Just looking for advice and information about this type arthritis, as we know nothing. I'm wondering if anyone else has a similar story?