Juvenile AS

I need some help. I have a 12y/o daugther who was diagnosed Jas in 12/2006. It has been a tough round for her... She was wheelchair dependent for one month or so and she was unable to attend school for 6 months. She is doing better and not dependent on a w/chair at this time but she continues to have flare up She currently takes enbrel 50, sulindac, lyrica, prednisone, metotrexate, prilosec and folic acid. The only thing that seems to keep her from flaring up is when she takes 10mg in addition to her regualr arthritis meds...She also has asthma meds she takes on a regular basis. The rhuemy is getting ready to taker her off of enbrel and place her on humaria. My concern is how the medicines will effect her in the long run and her future. She was a very active girl..She was 1st chair flute player in her middle school band, a baton twirler. piaon player, sports and a praise dancer and the world that she knew came to a sudden halt. But I am proud of her because she has a lot of determination and her spirits are high. She recently tried to start back to doing praise dancing but it just took the best of her.. What hope is there for my child?   

Hi, Does your girl have AS ankylosing spondylitis?  I noticed the first post said RA.  Well anyway, My son has AS.  We found our when he was 20.  Had been loooking for 3 years what was wrong with him.  He is now 32.  I have researched till I am blue in the face.  I felt so guilty due to the fact it is from my side of the family even through no one has had the gene "wake up".  I can tell you we had many ups and downs.  He is doing much better today.  We purchased a hot tub 3 years ago for him, he gets in once to twice a day.  He had a massage chair, pads, wonds and anything else we can find to keep the body moving. He has had a water bed but could not sleep in it so he has the memorie foam on top of his bed, 2 or 3 inches thick.  He can not believe how it feels to SLEEP for more then a few hours a night.   He does not live here, He has taken over my upholstery shop that is next door so he is here everyday.  He was unable to keep a regular job due to his flare ups and not being able to get up some mornings.  He works out on a  "bow flex" everyday wreather he feels like it or not.  Dan said that is why he is doing better.  Has stopped taking all meds 6 months ago.  Still has different problmes from week to week.  Some weeks he has trouble walking, elbows hurt, hips give out, chest pains.  It depents where the flare up in at the time.  I have been through his most terrible times of pain and cryed many tears for him.  I wish I could of taked it from him.  He was on Mobic, soma, and some other meds to keep swelling down.  He said he feels better now then he has in years.  I know it will go into remission, that might be happening.  She has to keep stretching, flexing and moving.  4 % of all go full blown and that is scarey. Strangs as it seems, my x brother in law is full blown.  Ken Prather is the spokes man here in Indiana for the As association.  I hope your little one the best.  I don't know if it is in her spin or other joints.  Dan's is manely in his spin.  He doesn't do any sports however he does most stuff he feels like doing. he rides a motorcycle, swims, is a gunsmith (I wanted him to have a occupation he can fall back on).  I don't know if this helped or not.  I suggest finding a AS chat/support group.  They have many.  I love  http://www.spondylitis.org/

So much help and support you will not feel along in this. 

Good luck. Ava