need suggestions for my 6yr old
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need suggestions for my 6yr old
| Sat, 11-26-2005 - 5:32am |
Hello all
My 6yr old daughter (Bridgette) was diagnosed with JRA last week and whilst we wait for our next pediatrician's appt (19th Dec) to find out more, she is in much pain a lot of the time. Cold packs, panadol and her anti-inflammatory tabs (Inza) is all we are doing at the moment. I started her on a fish oil supplement a few days ago but when she is crying in pain I feel so helpless.
I look forward to reading any and all suggestions you might have for us.
regards
Amanda

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I am so sorry about your daughter. It must he horrible for you as her mom to see her in pain and feel so helpless. Other than the meds and seeing the rheum, I don't have advice, but I wanted you to know it's slow here on weekend and I'm sure others will respond tomorrow. Please know you are welcome here anytime. Are you in the UK? I live in the U.s. (New Jersey, near New York City).
Michele
Thanks for your reply Michele !!
I am in Brisbane, Australia :)
Will try and drop in on discussion chat rooms if I can work out time diff !
Regards
Amanda
Hello Amanda and welcome to our board.
Molly
Hi Amanda,
I'm new here, and to RA...but I just wanted to give you and Bridgette hugs...its so heart breaking to see your child in pain.
The only suggestion I have is that heat works for me...hot baths, and showers, and heating pads, give me a lot of relief. I too am affected most in the areas your daughter is...
I hope you'll continue to post here...the ladies here have been sooooooo incredible to me, and they are so awesome.
Keli
Amanda, I just found this in a health newsletter I subscribe to:
Earlier Use of Second-Line Agents in Juvenile Arthritis Associated with Marked Improvement: Presented at ACR
By Paula Moyer
San Diego, CA -- November 18, 2005 -- When second-line medications are initiated within 3 months of a diagnosis of juvenile rheumatoid arthritis (JRA), it improves the chances of improvement in functioning ability, investigators reported here at the annual scientific meeting of the American College of Rheumatology (ACR).
Principal investigator Beth Gottlieb, MD, Assistant Professor of Pediatrics, Division of Pediatric Rheumatology, Schneider Children's Hospital, New Hyde Park, New York, United States, reported the findings of an ongoing prospective, observational, multi-center study on November 16th.
Dr. Gottlieb presented 1-year data on 317 children who were followed from 1996 to 1999, and 177 children enrolled in 2001 and who continue to be followed.
Dr. Gottlieb said that the data for both cohorts are still being compiled.
At enrollment and at annual follow-up assessments, the investigators are documenting the subtype of JRA, laboratory and x-ray features, and joints with active arthritis. They also documented the patients' duration of morning stiffness and extra-articular symptoms, as well as the Physician's and Parents' Global Assessment; medications being used, including doses and adverse effects; the disease course; need for physical or occupational therapy, and responses on the Childhood Health Assessment Questionnaire (CHAQ).
At 1 year, 24% of the first cohort and 20% of the second cohort were taking methotrexate; 30% and 19%, respectively, were on other disease modifying anti-rheumatic drugs (DMARDs), such as sulfasalazine, leflunomide, gold, or azathioprine. Biologics were being used by 7% and 8%, respectively.
"The two groups were enrolled at very different times in terms of the therapeutic options available to them," Dr. Gottlieb said, referring to the introduction of biologic agents that were not available when the first cohort was enrolled.
The second cohort experienced a shorter wait time before going to all second-line agents. In the first cohort, methotrexate was initiated an average of 11 months after diagnosis, while the first cohort initiated it an average of 3 months after diagnosis.
Other DMARDs were initiated an average of 3 months after diagnosis in the second group, compared to an average of 9 months in the first cohort.
Dr. Gottlieb noted that the first group received biologic anti-rheumatic agents a median of 34.6 months after diagnosis, compared to a median of 4.3 months in the second cohort.
At the 1-year follow-up, those treated with methotrexate in the first cohort had an average of 6.2 swollen upper joints and 2.9 swollen lower joints, compared to an average of 2.0 and 0.8 swollen joints, respectively, in patients treated with methotrexate in the second cohort (P < .001 for upper joints; P < .00001 for lower joints).
Among those on other DMARDs, the first cohort averaged 5.7 swollen upper joints and 2.8 swollen lower joints. The second cohort averaged 2.0 swollen upper joints and 0.8 swollen lower joints (P < .00001 for each).
Among those treated with biologics, the first cohort had an average of 5.1 swollen upper joints and 2.3 swollen lower joints; the second cohort and an average of 2.4 swollen upper joints and 1.3 swollen lower joints (P < .02 for each).
"Both improved, but the improvements were far greater in the second cohort," she said. "Children with polyarticular disease, in particular, the type that is most similar to adult rheumatoid arthritis, were found … to have greater improvement in the Physicians' Global Assessment in the new cohort. It is presumed to be due to the earlier introduction of second-line medications." She noted, for example, that 71% of children had improvement in CHAQ when methotrexate is started within three months of diagnosis, compared to 66% when methotrexate is started after that time.
The study was funded by the Arthritis Foundation.
Molly
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Molly
THank you for you replies Molly and Keli.
Bridgette is on half a tablet twice a day of the Inza (each tablet contains 250mg naproxan).
Thanks for the rice pack hint... a friend made me a "wheat bag" (pouch of material filled with barley or something - can be heated in microwave or chilled) and as Bridgette seems to prefer cold packs I put it in a zip lock bag in the freezer (so moisture doesnt get into it) and it is just lovely on her poor joints. I will do up a rice one too for her, as the wheat bag holds the cold for longer than the gel packs. I will however offer her a heat pack as an alternative to try this afternoon and see what she prefers.
Thank you for the links - I have read the arthritis.org one but will be reading the others immediately I post this reply :) Thanks also for the article you posted although I think I will need to print it and read it, as it was a bit technical while skimming through it just now :)
I have started a list of questions/notes for the paediatrician and will continue to add to it until we see him on 19th Dec. A few of the rheumatologists I have spoken to do not see children, so I think it is going to be tricky finding one :( Will let you know how I go with that.
Even though Bridgette has only had the hand pain since July and all the other joints since October I can feel her joints "crunching" when she moves them if my hand is on them. Is this common? It feels so ikky :(
Thanks again for replying - I have the site bookmarked and will be checking it regularly and I hope to drop in to a chatroom on Thursday or Friday (my time).
Cheers
Amanda
Normally, a crunching sound is crepitus.
Molly
I just want to hug you Molly!!
Thank you for that answer and that great list of questions - I have cut and pasted them onto my list.
The rice in the sock coldpack was great on her neck last night, at a different time I offered a heat pack (not very hot, just warm) and she didn't like it - so we will stick with cold for now I think. (both kids thought it was hilarious that I had "stolen" one of their dad's tubesocks and filled it with rice, and wanted me to make more heehee).
Thanks again !
*hugs*
Amanda
Amanda, you're getting a big hug from me (((((((((((((((((( Amanda ))))))))))))))))))))).
Molly
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