My 8 yr old was diagnosed at 2.5 yr old.
Anyone else trying to find help for their child?!
hrtofluv

I have found you won't get much response on this board when it comes to kids and RA or other similar problems. Both my girls 10 and 13 have a positive ANA the first one was 1:320 and speckled for the 13 yr old and 1:620 and homogenous for the 10 now just last week they were both 1:80 and nucleolar pattern RA test is normal. Really they don't have many problems they just have occasional joint pain but a Rheumatologist is monitoring them but has not diagnosed them with anything.The youngest one is having alot of problems with her knees for about 3 weeks so I guess she will get and xray pretty soon to see what is going on with that.

I can relate very much with your child having RA. My son, who is now 23, was diagnosed with RA at the age of 3. It was noticable even before that with him crying and screaming, but we could not figure it out, nor could the pediatrician. Family members could see it even more so than us. His legs were not able to straighten out all the way, and he used to scoot around on his bottom instead of walking. We finally took him to many specialists and all of them came up with different diagnosis. One Doctor said that he had Muscular Distrophy, which brought us to distress. Another Doctor stated that he had severe nerve damage which was uncurable. Enough pain and suffering was enough, so we took our son to the University of Michigan. We started out in Neuro, but they said that he had no neurological problems whatsoever, and they directed us to Rheumotology, and low and behold a research Doctor found it in his blood samples. Our son lived at the hospital for almost two years after that. The Doctor put both of his legs in casts at different degrees two to three months at a time until they both straightened out. He was given up to 200 baby aspirin a day, yes 200. Following home therapy for a year he was able to walk at the age of 5. RA destroyed the condiles in his jaw, and he had bone graft surgery of the jaw when he was 13. Now he is in full remision, and has been for the last 8 years. Doctors say that he will not have any flares for the rest of his life. He experienced what a 80 year old person did at the ages between 2 to 14. My advice to is to stay strong with your child and it might not be as serious as our son had it. Find a good Rheumotologist at your state university hospital and follow their advice. They are indeed the most reliable and helpful Doctors on earth. Good luck and our prayers are with you.

sherry and newhip,
Thank you both for your replies and advice. Been away from this board awhile with some medical issues.
My son started with a limp which led to the possibility of 3 - cancer, synovitis, or JRA. With our insurance, he was only allowed to see the rheumatologist on the plan. Problem was - he only dealt with adults. Even though there was a ped. rheum. in the next town, we weren't permitted to see him. The best advice I can give is - take your child to a ped. regardless of the cost!!!!!
This doc gave him a shot in the knee (which was NOT needed) and then put him on naprosyn. One week later I found his diaper full of blood. Although no doctors at the Children's Hospital would come right out and say it, but the dosage my son was put on ate a hole in his stomach causing the bleeding. We spent a week in the hospital facing possible transfusions (luckily didn't have one) and multiple tests. Endoscopy, 2 Colonoscopies, Meckles Scan, finger pricks every hour to see his blood levels. The endoscopy was done and that afternoon I noticed his top two teeth were cracked. Apparently the GI doc told someone that he bit down on the scope and he had to force it down - but NO ONE would admit to it when we contacted a lawyer. The reason for the lawyer was that this doc comes in and tells us that his teeth were rotter cause the cracks turned black. Well, the turned black because he killed the roots. My son ended up with 3 separate oral procedures because of this. And since he had been put to sleep too many times - the dentist didn't want to do it cause of risks. So I sat there and watched my son crying and saying AH through the whole thing. Something I relive all the time in my dreams. But luckily he goes into the dentist now just fine - he must not remember anything.
The only benefit of spending the week in the hospital is that they called the ped rheum. in to review his case and from there on out - we have been seeing him. THANK GOD! He has had contractures several times and we continue to get PT for several months a year (usually in the winter). He can NEVER take another NSAID again because of his bleeding episode, but we just take new meds one at a time now. We have been blessed in that although his ANA has been positive twice, he has not had major issues. Minor pain in knees, ankles, feet, hands, elbows, and fingers.
Well - that's all for now. Sorry for the long post!
Wishing all you parents of JRA patients the best of luck!!!!
hrtofluv

Sorry to hear about the problems you went through getting diagnosed and getting the right treatment for your children.

I was diagnosed at 3 or 4 with JRA back in the 70's. You'd think the doctors would consider the possibility of JRA by now.

I'm not sure what treatment they gave me then, but I believe it caused loss of hearing in my right ear. They also operated on one of my knees (reconstruction surgery). It didn't do anything that I know of, but they thought they could cure it. For me, symptoms of JRA last for about a year then I have full remission for a good 6 to 10 years. So, it came back at ages 10, 16, 26, and now 35. It's been almost a full year this time around. I'm hoping it's not here to stay. They say stress or major event can trigger an onset.

hrtofluv,
I wish you all the best with your son.

Sincerely,
Deeda

DeeDa - thanks so much for the info and the sweet message. We have a couple of adults at our church that also had/have JRA. One man - you would NEVER know anything was wrong - he is over 6 foot tall and does well - he says he's been in remission since his teens. The other - a female - had several operations - was in a wheelchair through most of high school - has had multiple joint replacements - I think she must have had a severe case (and probably not diagnosed correctly). But she is such an inspiration - she walks with a limp, but cruises along wearing finger braces and just smiling. My 8 year old is already taller than her - but she just laughs and hugs him. She has truly been a life saver to me through most of the diagnosis phase.
God Bless Julia!!!!!
I pray that you go into remission soon DeeDa!!!
hrtofluv

hrtofluv - I love how God puts people in our lives to help us through the difficult times. There's a man at our church who has lyme disease. He suffered with the symptoms for a while before someone in our church told him to get checked for it. (He didn't get the bulls-eye rash) Sure enough, he had lyme. It caused a lot of damage by then and he is still in pain, but he is now being treated for it. He reminds me of Job and I am comforted. I'll be sure to keep you all in my prayers.

hi my daughter is 2 and a half and find it very difficult to find anything so if you do please could you let me know thanks karen