Juvenile Rheumatoid Arthritis

[my2girlsmom]

Hi,

Looking for guidance/support from any parents who have a child with this.
My dd (6.5) was diagnosed in November and has been responding well to medication. When the weather is inclement or she is tired though, her hips really bother her. We're planning on having a double stroller ready (she has a little sister 4), and we have a note from the doctor in case the walking gets to her and we don't want to have her standing in long lines.

Other than that...anyone have any tips? This is definitely one of those non-visible type of chronic disabilities that we're never sure when she will have a flare.

Any help would be appreciated!
Marion

 

[Talking Hands]

Get a GAC (Guest Assistance Card) which will allow the stroller to be used in line like a wheelchair so she doesn't have to stand in the line. You will not need to have a note from her doctor. Just go to guest services and explain what her needs are. Have a wonderful trip.

 

[scroot]

MY DW has JRA and has had it since age three (that was quite awhile ago but I am not supposed to say how long). DW is an amazing woman. She is the way that she is because she was taught to do everything she could without taking shortcuts that weren't necessary. She developed a stuborn streak but this has helped her to accomplish lots of things, like earning a master's degree, and putting up with me.

They can do so much more with JRA today than they used to. The disease may bring with it its own limits. Consider letting your daughter figure out what she can do and how much. Also, consider a grown up chair. DW would have resented a stroler at six and a half (she complains about riding in one at age 4) if another option was available.

You will be in my thoghts and prayers