Is anyone out here a parent of a child with Juvenile PsA? A mom from our church just found out her young daughter was diagnosed with this, and she could really use some good advise from someone who has been there. I was going to refer her to this group, but wondered if anyone has experience specifically with Juvenile PsA first. Thanks.
Hi, I was diagnosed when I was 8. They told me I might outgrow it unfortunately it never happened. I hope that your friend and her daughter are coping ok, I remember it being very hard on my mum. Sometimes harder than it was on me, probably because I was to young to really understand. It's a good idea for them to get some sort of support, if not on here somewhere. Take care :)
Thank you for your reply Mel, I know this gal is VERY scared. Her daughter's PsA seems to have settled into her jaw (and other joints) but the jaw is the worse. They are sending her from one specialist to the next. (The good thing is we have a famous Children's Hospital in our town so she does have great doctors here.) They are currently giving her the worse case scenario....she'll be blind, she'll be crippled, she won't be like other kids, etc. I agree, she needs to find a peer who has been through this to help talk it out...wish I knew what to say to her to help. Also, I think if she got online and read all of the worse parts of having the disease, it may scare her more. I don't know if she is ready for this group because she is still so upset, it might not give her the "hope" she is looking for. We will just have to keep praying for her. Thanks again for your comments, hope you are well!
Sounds like your being a great friend Lainee. All you can do for her is be there, be a shoulder to cry on, someone to vent to, someone to talk to. I'm sure you have already been doing all this for her. The best advice I can give you is to make sure she educates herself, it may be scary and daunting but its definately for the best. If I had my time over I might have chosen different medications because of the long term effects that I am starting to see. Also she needs to trust her instincts and her daughters, doctors sometimes get it wrong (i got told at 18 that there was no more meds for me to try and that i would just have to live on pain meds...not true!) finding the right doc is crucial! Honestly in my experience growing up with it wasn't absolutely horific...especially because I was young, in a way i was lucky enough that I can't remember what it was like before PsA...so i didn't know what i was missing out on. My parent's didn't try and shelter me (they didn't tell me I couldn't do stuff unless it was totally necessary) to much and I had great friends. It has made me extremely determined and strong and grateful for what I do have (don't get me wrong i have my why me moments). Now I am living a pretty normal life, I'm a shop manager and can work up to 45hrs a week! I still have great supportive friends and family, who help me more then they will ever know. 5yrs ago I couldn't get off a couch without help...It has its hard hard times but with the right docs and meds things can get a bit better....unfortunately it can take a bit to find both. I do get tired and sick and wonder when my good luck is going to run out sometimes. Sorry this has just turned into a giant novel, I guess i'm just trying to say is somehow we find a crazy amount of strength to get us through it. If there's anything I can do to help you or your friend I'd be more then happy :)
Thanks Mel! It is a great thing we can all share our stories. Truth be told, I really don't know this gal that well, just and acquantiance. BUT...because we share this illness in our lives I feel compelled to help her in some way. I just thought if someone had experience as a child it might help the mom to learn all she can. I may suggest this website for her to learn more, and if you don't mind, introduce you to her. I'll see how it goes! Thanks for sharing your story, you can write a novel any time! (I do it too!!!)
Have a wonderful day,