I'm here for support and information about rheumatoid arthritis in kids. My daughter who is 5 was diagnosed not that long ago. We're also looking at the possibility of lupus. What's your experiences, tips, etc? Any info welcomed.
Hello, I have RA but know that we have a few members with children with JRA. Can you tell us more about your daughters symptoms and history? What tests have been run with what results and what treatment plan is being prescribed?
I wish you and your daughter the best. I just returned from a ped visit for my 4 year old daughter and the doctor referred us to a rheumetologist with suspicion of either JRA or viral arthritis. She has a bruised and swollen ankle, swollen opposite knee and a swollen elbow. She's in day 10 of a viral illness that presented with fever, sore throat, congestion, headache, skin rash. Doc didn't think it was 5th disease, chicken pox or scarlet fever. They've drawn blood work and we're waiting on results. Scheduled to see the rheumetologist on Monday. I'm pretty freaked out. I would like to join in your request for info. thanks.
My 5 year old daughter may/may not have either JRA or Lupus. We are scheduling an appointment with a rheumetologist also as we have yet to receive results form blood work done at the hospital and I do not understand how this could have happened, but I am thankful for the posts as she had a viral infection recently and so maybe this will go away? Or is it permanent? Does anyone know?
I have a 5 year old who's been seeing a pediatric rheumatologist since he was 3 1/2 years old. He isn't diagnosed with jra but she really feels he should continue to be watched closely. I probably had jra as a kid. I had severe knee pain when I was 14 but was told it was growing pains. Then when I was 17 I was dx with RA b/c of my hands swelling and painful.
So I understand your fears first hand unfortunately. Far far worse when it's your child then yourself! I've been told that the bloodwork is rarely positive in children even when there is active disease. And there is no way to really know the course the individual child's disease is going to take. For example some may have a very insidous onset and take years to develop anything or it may even just be minimal and then go into remission never to be seen again. While others may be hit hard and fast and be very very ill and have a greatly impaired lifestyle thereafter or they may also go into remission. And it could be anything in between. The feeling of the doctors is to treat it aggressively once they know what they are dealing with and the child will hopefully go into remission.
Make sure you have an excellent doctor who spends time looking over your child well and taking a thorough hx as well. My son's doctor is so wonderful. She notices the smallest things and asks me questions I wouldn't think to offer on my own. His bloodwork has been negative. He had a MRI of his knee this last winter b/c he'd developed a baker's cyst. The MRI showed no active inflammation though. He still limps first thing in the morning though.
I hope your children fair well and whatever disease is plaguing them will be short-lived and go into remission!
I've had JRA since I was 5, which started not long after a common childhood virus. JRA and RA tend to run in my mother's side of the family, but I'm the only one of my generation to get it. My grandmother and two of her sons had it, my mother does not and neither does my sister. No one knows why it strikes one person and not another; all they know is that something triggers the immune system to attack its own healthy tissues.
So it's kind of a waste of time trying to figure out the why of it all, or to lay blame. It's no one's fault, it just is what it is.
Once you have RA, you have it for life. Sometimes it goes into remission and the patient can live as if they they don't have it but must always be aware that it could flare up again at any time.
I've had it most of my life and am now 51. I went to college, got married, had two healthy children, all the normal stuff. :) That's not to say it wasn't a challenge for me - it was - but it is possible with proper and aggressive treatment to live a good life. Maybe not quite the life you envisioned for your child, but it WILL be a good life. Your job as a parent is to not treat her any differently than you would a normal child. Keep your hopes and expectations high, and when your daughter wants to go and do things that you don't think might be good for her joints, bite your tongue and let her try. :D
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