OT: Juvenile Rheumatoid Arthritis

[goofy4wdw2]

Does anyone have a child with JRA? DD2 was diagnosed with JRA in the fall, and it's quickly progressed to 8 joints, so she's starting maintenance therapy now, along with some upcoming joint injections under sedation. Just looking to see if anyone else has had experience with this as this is new to us, and a little overwhelming. Thanks!

 

[billwendy]

Hi,

I am a pedatric OT, and have done therapy with children with JRA. It is so overwhelming, try to find other families who are also dealing with this so you can support each other. I know joint protection is a big issue, even when they are tots. I'll pray for your little one, and I hope some of the newer medications out there are helpful.......

 

[MSSANDRA]

No experence but prayers for your family

 

[karliebug]

You may want to check out the disabilities board here on DIS, they have lots of information on touring with various challenges. HUGS.

 

[hannahgirl10]

My daughter was diagnosed in 2004. She is on chemo therapy, an enbrel injection, dilaudid and alot of other meds. Not working so great yet but we have hope. We are taking her to Disney in April and hope that she is well enough for the trip. Make sure you see a Juvenile Rheumatologist and be aggressive with the treatment going slowly can cause permanent joint damage. Good luck. My prayers are with you.

 

[kt_mom]

I was diagnosed with JRA when I was 15. Usually I believe kids are diagnosed young like 3 or 4 or something. I had it pretty bad. I missed a year and half of school. I had systemic JRA and had fluid on my lungs and I think my heart. There is alot I don't remember becuase I was so sick. I had a wonderful Rheumatologist. Although I was the youngest patient there which was really weird. They put me on prednisone which helped alot with the pain but was very addictive and hard to get off of. I would reccomend staying away from that if at all possible. They tried several different medications I think, but I ended up on weekly shots of Methotrexate (I don't know how to spell that) which helped alot. I got sick at the very beginning of 10th grade and missed that whole year of school. By the second semester of 11th grade I was able to return to classes and finished highschool normally. Feel free to PM me with any questions. I only really know of th systemic kind though and I think it is a little more rare then the other forms.

I'm editing to add that I am pretty healthy know as an adult. I do have joint pain sometimes but I went in to see my Dr. a couple of years ago and he said I seemed good. All the blood tests were normal and there was no sign of anything returning. I was pretty sick for a good year and half, but I did get better. I did my best to take good care of my joints when I was sick so I wouldn't do too much damage to them.

 

[LoriMomx5]

I have a ten year old son with JRA diagnosed when he was 3. He has been relatively lucky in that primarily his knees, ankles and joints of his feet are affected. He had difficulty with sports but loves art so I hope his hands remain good. It is tough to see your child in pain. I am an occupational therapist so I knew some about JRA and Jackson's issues but it is so different when its your own child. My thoughts are with your and your little one. Lori

 

[ark's dad]

Our 8 year old daughter, who also has down syndrome, was diagnosed with JRA in 2004. We were on enbrel up until August 2007 and we tried coming off the meds. She was great until a couple of weeks ago she had a 24 stomach virus and it seemed to trigger the JRA which is full blow again. We restarted the enbrel last week. It takes a couple of weeks to kick in. She is in lots of pain even with the other meds for the pain. We are optomistic about it starting to work in another week or so. The last time we were on it it worked great. I was tough for me to give the injection the first time or two, but to keep it under control it is a good trade off. I hope the best for you guys. Your welcome to email me if you would like to talk further.