Parents of Elementary School Students with JA
177 Members
This online group serves parents of children living with Juvenile Arthritis who are in elementary school or younger from across the country. We invite those who are looking for support, education, robust programming, expert speakers, and connection to join us and meet others who understand children in this life stage.
Live Yes! Connect Groups for JA Parents provide connections, education, and empowerment for parents and caregivers with children living with rheumatic disease. JA Parents come together for professional and volunteer-led sessions on a variety of topics and group activities as it relates to raising a child with arthritis.
Participants gain skills to advocate for their child, help their child develop self-management skills, and discover strategies for daily living. These groups are part of an expanding range of Arthritis Foundation resources that provides personalized help & support to parents who have a child/teen with a childhood rheumatic disease.
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Connect Group - National - JA Parent Elementary School and Younger
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Comments [10]
Hi so wanted to introduce myself my name is hailey and my daughter kenzlynn aka kenzie who was was diagnosed at 4 years old year 2022 with uveitis and JIA and she is now 6 almost 7. She is currently on methotrexate and humira shots because just metho wasn't strong enough for her. Boy has it been a roller coaster of emotions, confusion, anger etc. So we have been on metho for about almost a year and humira shots for about 6 months now! Thank god because she is in medical remission so far! 🙏🤞 just looking for guidance,for information,for future events so she can meet other kids like her so she don't feel alone! Also to help support and share awareness of this disease! More people need to know that kids get arthritis too! That just because kids look healthy on the outside does not mean they are in the inside!
Hi everyone. My daughter who is two was recently diagnosed with JIA. Does anyone recommend her taking Methotrexate? I am so afraid of the side effects. She's already on a steroid and it went from her ankle to her fingers. She's so young and I really want to do what's best for her. Please help 💕
Oh! And she was put on folic acid tablets daily when we started the methotrexate. We mix it in with a tablespoon of applesauce and she's never had issues with it.
Hi Michelle! Just joined the group so you may have already started by now. My daughter was diagnosed last April at 2 yrs old. In her left knee and right ring finger. We did steroid injections in May last year. Within a few weeks that wore off and her swelling and limping started back quickly. We started methotrexate around October last year. It's helped a ton and she has had no side effects. We were able to do the oral version rather than the shot for her. Our insurance changed this year and she went without it for a good 6 weeks or so. Saw her symptoms come back pretty quickly. Finally got her pre-approval done with insurance and she's been back on it again for a little over a month. Already seeing improvement again and no side effects. She's never had any sickness or nausea from it either.
Hi all! My daughter is now 5, but we started methotrexate at 2.5 after steroid injections failed.
She ultimately failed methotrexate as well & we added Humira.
She is currently taking Humira & Methotrexate.
I give zofran 30 minutes prior to methotrexate injection & do the injection right before bed. We have had to lower her dose because she wasn't eating the day after injections due to the nausea. But she has had no issues on the lower dose! I also let her pick out bandaids she liked to make it more fun. We do celebrations for 50, 100, 150, and 200 injections with cake and presents as well.
I was TERRIFIED to start methotrexate & it still makes me nervous some days & worry if I'm doing the right thing. But seeing your kiddo be able to run and play again is one of the best feelings in the world!
Prayers you are all doing well & your kiddos are doing better!
Hi Michelle and Alex! Like you guys, my son was diagnosed last year with JIA at 3 yrs old. It's been incredibly tough and an emotional roller coaster for the whole family. We did two rounds of steroid shots in both knees and ankles but it wore off both times within 3-4 weeks unfortunately. So we are seriously considering Methotrexate, but I am very weary of it considering the side effects as well. I hate the thought of him being on serious medication like that. Have either of your children started it yet? I will let you know how things go if we decide to put our son on it for a little while.
Hi Michelle, I'm in a similar position as you. My daughter recently turned 3 and her knee swelling has returned 4 months after steroid injections and we're thinking about Methotrexate. Would be interested to hear your experience if she started it. <3
Hi all! Just joined here but my 6.5 year old daughter has had SJIA for about 2 years now. I'm looking forward to connecting with other SJIA families!
What natural remedies have you tried for your child as far as treating JIA?
Hello!!
Tonights February 15th's link for zoom meeting is https://arthritisfoundation.zoom.us/meeting/register/tZArcuyppz8jGtPIreDIZ2BGNXfA8brv92nT
We will meet promptly at 8pm ET/ 7pm CT/ 6pm MT/ 4pm PT to discuss pain relief strategies with our kids.
Can't wait to see you there!!
5pm PT for February 15th
Hello! My name is Robin and my 7 year old daughter has systemic JIA. She was diagnosed when she was 3 and was on medication for about a year, then went into remission. She recently had a severe flare so she's back on medication and we're thinking more long-term now as we've seen the disease return. Looking forward to connecting with other families here :)
Hello, my 3.5 year old son was diagnosed with Extended Oligoarticular JIA about a year ago. He has been on Methotraxate and Humira since then. They have some side effects, the main one being loss of appetite and burping. I wanted to learn from other parents on a couple of topics:
1. Have you pursued any physical therapy and have they worked?
2. Any insights on complementary treatments including change in nutrition that have worked for you.
My son has definitely improved but he is less active than other kids his age. So trying to see what I can do to help.
Hey everyone! I'm the mom of an 11 year old 5th grade girl that lives with juvenile arthritis. Just looking to connect with others and to find support with all that this experience brings! I hope to connect soon!
Hi we have a 5th grader daughter with arthritis too who may be going thru similar stuff as yours. Hope to connect.
Hi Dasha,
My 7 year old daughter has JIA and we're interested in connecting with other families as well.
Hello,
Im looking forward to this group as I navigate finding the best team of doctors for treatment of JIA for my 5 year old.
Hi Kathleen,
My 7 year old daughter has sJIA. Sending you lots of strength and support on this journey.
Hi Kathleen!
Hi,
I am registered for the presentation today, but have not received a zoom link, just a confirmation email. I have checked my inbox and spam email. Is there another way to get the link? This happened to another webinar I tried to attend, I just don't want to be missing a step.
Thanks,
Erin