Teenager Diagnosed with Juvenile Rheumatoid Arthritis

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Teenager Diagnosed with Juvenile Rheumatoid...

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Concerned Father

Posted Wednesday, August 19, 2009 5:19 PM

Group: Forum Members
Last Login: Thursday, August 20, 2009 4:08 PM
Posts: 1, Visits: 3

I am new to this forum. We have a 15 1/2 year old daughter who was diagnosed with Juvenile Rheumatoid Arthritis last Wednesday. I would like to talk to parent of someone who is in the same situation (an older child with the same diagnosis).

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Juile

Posted Thursday, August 20, 2009 9:54 AM

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Last Login: Wednesday, November 18, 2009 12:48 PM
Posts: 101, Visits: 134

There is a girl on this forum named Racheal Gustafson who is the same age as your daughter. You might try posting directly to her. Also, you might get some parents with older children who post on the regular arthritis forum. My daughter was 5 when she was diagnosed and she is almost ten now and doing well off her meds. Most of the parents on this forum have younger kids, but you might find a few with older ones. We would all be glad to share with you and offer support in any way we can. A lot of the symptoms are the same whether you are an infant or an adult, so even though our kids are younger, we still all share the same worries as parents and experience the disease through our kids. I hope you are able to find the support you need, whether it be here or at another site. We will keep your daughter in our prayers for fast relief and permanent remission.

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Beth Frawley

Posted Monday, August 24, 2009 3:14 PM

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Last Login: Monday, August 24, 2009 3:15 PM
Posts: 3, Visits: 5

Hi...sorry to hear of your daughters dx but now you can move ahead and treat it. My son was dxed with JRA when he was 16, in the fall of his junior year of HS. That was 1 and 1/2 years ago. He had been very ill for a few weeks when we got the dx. We were lucky and got a great pediatric rheumatologist who started treating his illness aggressively. He started on a very high dose of prednisone and injectable methotrexate, which helped at the beginning. We then added Enbrel a few months later and when that didn't seem to be working they started him on Remicade infusions, which have been a godsend. I will warn you that it is a roller coaster ride with a lot of trial and error to see what works and what doesn't. It seems like every time we turned around for a while, we were finding out a new by product of this disease. We have been lucky ot have great drs. who understand how important sports are to my son and have fought to get him healthy enough to play on two varsity teams. Monday I dropped him off at college where he will be playing soccer, so there is life despite this disease.

Hope this helps. This process is a whole education of its own. Depending on how ill your daughter is and what joints are affected, you might want to check with the school on setting up a 504 plan for her, which would allow for accomodations such as word processing or hard copies of notes should she need them. My son also got physical therapy from school 3X a week with his 504 plan. Don't be afraid to try massage and aquatic therapy as well, we found them very helpful. Good luck to you and your family!

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