I have spent hours reading through this site trying to get a handle on what PsA is and will mean for my daughter and husband. Thank you for allowing me to join. My daughter is 9. Last year following a strep infection she began having hives and swelling/itchy joints of fingers and toes. She went through allergy testing and was basically told they did not have an answer. It was only until yesterday ( a year with symptoms) with her general doctor I brought up the concerns again and the doctor approved referral to a rheumatologist. I went home and started googling. I am self diagnosing her, but I believe it is PsA. Her appointment is a week away. I am very scared for her. She is so young and healthy right now.
My husband has had psorasis for over 10 years. He has high blood pressure. He spent a year at NIH with a weird vision problem with holes in his vision 5 years ago. They diagnosed it as uvieits. He recovered. He spent 6 months on crutches due to a mysterious foot pain 4 years ago. He recovered but often experiences foot pain and wears special inserts in his shoes. He has bad swelling around his eyes currently and has always blamed it on psoraisis. He would never go to the derm. because he believed the steroid cream for psorsis caused his eye infection but now from researching I believe all of his past problems are due to PsA. He also has a dr. appt. in a week.
What will this be like for my daughter being diagnosed so young? I can't find much information about children with PsA. She currently does not have psoriasis. Right now she does not have any movement issues just random swelling and itchy joints in her finger or toe and intermittent hives. Is she too young for the medicine? What was your experience, if you were diagnosed at a young age?
The reason you won't find much information about children with PsA is because they are rarley if EVER are diagnosed with it (an occasional rheumy trained on the West Coast may call it that.) Children that young are diagnosed with various forms of JIA or Juvenile Idiopathic Arthritis. Most recover within a year to 18 months, others go into remission for years. Children almost always have enthesitis as a primary symptom. Itchy joints and intermittent hives are not a symptom of PsA at any age and uveitis is not a primary symptom. This doen't mean they don't have sometype of autoimmune disorder and most certainly a Rheumatologist is a good place to start.
For a youngster with JIA, I'd recommend an Childrens Arthritis Bootcamp sponsored by the Arthritis association. They also have some great resources for developing 504 plans for school. With my Grandaughter who we are raising things aren't much different than they are with me. Although she is 15, and is special needs with a mental age of 5 life is no different. She monitors her own medications (although we dispense) is responsible for her daily exercise regime, does her own injections. "Cant's" attributed to her arthritis unless we have already made allowances cost her "screen time" her chores, school work, exercise, and general demeanor are expected to be up to snuff on time and done. She doesn't have to run laps on a hard gym floor but does on a rubber running track. Should she attempt to use her "disease" in anyway to shirk responsibility there is holy hell to pay.
Parenting a child with chronic illness/needs is a challenge in that you have to be far more consistent, demanding, and expectations clearly set and of course organized. If not life will become a living hell, just as it will for an adult who starts to compromise because of "illness"
I had PsA as a child though I was not diagnosed until I was 50. When I was young PsA was not even known, all joint problems were diagnosed as OA or RA. My father was a Veterinarian and he was my source of medical care until I was 18 or so. We lived in a very rural state. I did see an Opthalmologist until I was 18 as I had "eye problems" and started wearing glasses at 18 months. I had intermittent joint problems which started with achilles tendon swelling, stiffness and pain. I was very active gymnastics, dance, horse back riding etc. I think the activity kept it is check. Once I was older and slowing down is when the symptoms came to a head and I was diagnosed by a Rheumatologist. I did have 2 falls as a child where I broke bones and tore tendons. My Rheumatologist has since wondered out loud if instead of falling and tearing tendons if I instead had a tendon rupture and fell breaking the bone. We don't really know and in a lot of ways I was very lucky not to be diagnosed back then as the meds available were worse than the disease. We are so lucky to live in the time of biologics! With good medical care and loving parents your daughter can live a long and very active life.
Thank you both for your advice and wisdom.
Hi Hope, my daughter has chronic uveitis and some signs of psoriasis, and psoriatic arthritis is suspected although not diagnosed. It all began last year at age 9 (though she had some achilles issues as a toddler that in hindsight seem related). She is being treated with Remicade after we were not successful with prednisone or methotrexate. She is doing great on Remicade, and we have an excellent care team with our eye doctor and rheumatologist.
A lot has changed in the past decade with arthritis and though this is not a journey you ever wish for your child there are a lot of options. It’s not easy, and it can feel pretty scary but you are not alone! Please reach out if you need support. There’s a great group here, and I’m happy to share my mom’s perspective with you any time.
Hang in there!
Thank you very much. I have changed my screen name due to another hope on the board.