Newly Diagnosed 2.5Yr old - advice please!

Mummy2onelittlegirl Member Posts: 2
edited 27. Aug 2015, 02:36 in My child has arthritis

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?
Many thanks


  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00

    Welcome to the forum. I am sure you will find support, advice, friendship and light relief here,

    I am one of the moderation team. We all have one or more arthritis 'hangers on' or care for family member who has the same. If you have any difficulties with the technicallities of the forum please get in touch via a personal message.

    Best Wishes
    CK Moderator
  • stickywicket
    stickywicket Member Posts: 27,726
    edited 30. Nov -1, 00:00
    This must be very distressing and unnerving for you and you are quite right that the lack of knowledge is the hardest thing.

    I'm afraid I can be of no help. I've had RA since I was 15 (over 50 years) and have been a regular member of these forums for 5 years but I've never heard of RA starting in the neck. In fact, in children it's not usually referred to as RA but as JIA (Juvenile Idiopathic Arthritis) which has several types

    Your little one is in good hands and will be seeing a rheumatologist quickly. That's always the best outcome for anyone with an auto-immune form of arthritis. The sooner one is started on the medication the better. Unlike adults, many children make a complete recovery and just grow out of it. I hope that will be the case for your daughter.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, my heart goes out to you and your family, what a ghastly situation in which to find yourselves.

    The good news (such as is it) is that you are under the care of one of the best children's hospitals in the country, they know their stuff and I am sure will be able to talk you through the various options that will crop up along the way. It is truly shocking to discover that such little ones can be at risk of this malarkey, many think that one has to be old before one begins arthritis but, as you have discovered (and as us on here know) that is not the case. I think you were very wise to turn away from Dr Google (he's an ignorant so-and-so), it's best to talk to those in the know such as the hospital staff.

    None of us have a crystal ball so cannot predict the future but I hope the referral to rheumatology comes through soon. It may be worth asking around the family whether any member has had an auto-immune arthritis, it is generally accepted that there is a genetic link but it can also start out of the blue. Please keep in touch and let us know how things progress, I hope other parents will see your post and reply but it is the holidays and they are busy people.

    I wish you all well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben