HELLO FRIENDS
That says alot about this forum.
Our daughter has been recommended to be involved with Cinncinatti Childrens Hospital Study group.Has anyone done a study group before? Do we have to go there from here in Canada or do we just send down specimens or results of requested tests? Our RA and Hemodoc are being vague at this point but the organizer in me is crying out what is next, how do I make this easier, what do I need to be aware of?
Amy has two rare diseases and CCH is studying them with possible PROCEDURES in mind. I think Procedures means meds , therapy or dare do I hope--solutions for remission?
Our doctors are doing the paperwork and giving us permission forms at our next consult May29th. Amy will be down to 12.5mg Prednisone then and I think they are waiting to see her blood counts and health. Her sle Lupus in addition to her evans and alps was the kicker for this offer. She is 11 and at first said she didn't want to be a ginny pig but we explained she would be helping herself as well as other kids in her shoes down the road. She is hiding out these days due to the cheeks, teasing, previous hair loss and weight gain. She says all she wants this summer is to get back into her favorite jeans and get her old face back. Our 14 yr old son wants contacts, to be rid of his acne and get his braces off. What does this say about peer pressure?
If anyone is from Cinncinatti or had dealings with them on this message board could you advise about your childrens hospital?
thanks Janice for Amy
Janice,
I am from Cincinnati and the Children's Hospital here is great. It is consistently ranked in the top ten children's hospital in the U.S. They do a lot of research studies there. I couldn't guess what would be involved with the study. I would think your doctor would have that info. Here's a link to the pediatric rheumatology studies that are in progress: http://www.cincinnatichildrens.org/research/trials/current/r heumatology/
Good luck!
Shannon
Hi Janice, I just wanted to welcome you to the boards and wish you good luck with your daughter.