I'm not sure if this is the right place to post or not, so forgive me if it isn't. I didn't see much happening in the group for "Friends and Families Affected by PsA" so I thought I'd try to stir things up here.
Is there anyone else in the group who has a child with PsA? My daughter is 9 years old and was diagnosed early this summer. Currently her only symptoms are iritis/uveitis and pitted fingernails. The iritis/uveitis has been quite bad, and we're still working on trying to find a medication that will work for this. We're waiting to see if her increased dosage of MTX (by injection) will do the trick. We're very eager to get her off of prednisone as she has gained a significant amount of weight for her size in just a few months.
Next stop is infusions of remicade if the MTX doesn't kick in soon. We should know in a few weeks. As luck would have it, we finally got our insurance to cover the MTX, so I feel certain that we're bound to start infusions if for nothing other than to give me another fight with our insurance company. Ha!
Feeling kind of alone as we navigate through the risks and benefits of all of the treatment options. Doesn't feel great to give your child anything that increases the risk of cancer. Also dealing with all of the emotions that a child who suddenly feels very "different" as she goes to what seems like a doctor's appointment every week. (It's at least every other week with the eye doctor checkups.) I just ordered a book on parenting a child with a chronic illness and am reading like a fiend about inflammation and almost anything I can lay hands on. Would love to connect with another parent on a parallel journey.
That said, I really value the connections that I am making on this board with the adults who have PsA. The insight into your lives is invaluable as I learn everything I can to help prepare my daughter for her future. Those of you who had PsA as children and share your stories help me see things from that perspective too. Please do continue to share. I appreciate that you've welcomed me into your world and care enough to have read this long post!
Welcome Katie! I know their a few parents of children with PsA but I do not remember if they are adult children or not. Perhaps they will chime in as they check in on this site. I think it is marvelous that you are helping your child adapt to this. Many us who had it as children were not diagnosed until adulthood. It is a wonderful to see more people being diagnosed earlier. The chances of avoiding permanent deformity is greatly increased with earlier diagnosis and treatment. Yeah for you! Welcome!
PsA is fairly rare, and arthritis is children is even more rare. It's like finding a needle in a haystack!
I know the arthritis foundation has great programs for children with arthritis. When I was a kid, pre-internet, I was able to have pen-pals with other kids with arthritis. My pediatric rheumatology clinic had a support group, but it was far away and we couldn't ever attend.
I suspect if you check out the arthritis foundation, or your local pediatric rheumatology clinic, you may be able to find some in-person support for both you and your daughter.
I have had this since I was in third grade, so I guess I was 8 years?
It was tough always complaining that I hurt and having no one believe me. I think its a wonderful thing that we have come so far from there.
Marietta’s suggestions are perfect. I feel certain that the Arthritis Foundation has something for children, and a supports group wouldn’t hurt either. Something that helps your daughter realize that she is normal. Finding a pediatric rheumatologist is a very important step as well. Kids aren’t just little adults, and they need their own specialized care.
Thanks, everyone. I finally was able to connect with the local contact at the Arthritis Foundation and am meeting up with her next week. I'm looking forward to learning more from her experience with her own daughter, meeting more families and helping my daughter connect with some new buddies in the same boat. (A pen pal is a great idea, Marietta. Thanks!)
We got the official news this week that the MTX is not working. My daughter is going to begin infusions with remicade next week (of course, pending insurance approval). I am sure that we will meet more families at the pediatric infusion center too. Not exactly my preferred venue for making new friends, but good nonetheless.
Thanks for the note regarding being sure to have a pediatric rheumatologist, GrumpyCat. We do have an awesome one. I am happy to report that the pediatric rhuemy, our pediatric eye doctor and my daughter's pediatrician operate as a very tight team. It's really be so wonderful to see how often and well they communicate to coordinate her care. I feel very blessed to have this all pretty local.
Thanks again and best wishes to everyone!
So pleased you have such a great medical team for you and your daughter.
Makes all the difference!