Raising A Child with JA
425 Members
This online group serves parents and caregivers of all children living with Juvenile Arthritis 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 the needs of children throughout their life stages.
The Raising A Child with JA Connect Group provides 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 from birth through young adulthood. This group is 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. When needed, we will utilize Zoom Break Out rooms to facilitate smaller group discussions.
Upcoming Events
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Tuesday, October 21st, 20258:00 PM EST1h 30m
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Virtual Event
- 23 people attending
Please join at 8pm ET/ 7pm CT/ 6pm MT/ 5pm PT Tuesday, October 21st for a 90 minute group. Join us to learn about the benefits of an anti-inflammatory diet for JA kids. Learn new recipes for the whole family and share tips and tricks for those "discerning" eaters! Stressed about meal planning? Come see if meal prep tricks will work for you and your busy family!
After our presentation, there will be time to connect with others. Friends, Family, and Care Partners are always welcome to join meetings. We respect privacy and confidentiality and do not record our online meetings. Upon registration a Zoom link will be sent. You may also join by going to the Raising a Child With JA event page the day of the event and hitting the JOIN NOW bubble.
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Tuesday, November 18th, 20258:00 PM ET1h 30m
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Virtual Event
- 1 person attending
Join us for a presentation by Attorney Kathryn Strobach who will speak about the strategies JA parents can use to navigate health insurance during Open Enrollment this year. Kathryn will share tips on how to compare plans, changes to the Open Enrollment and Medicaid programs this year, and how to approach the appeals process if a claim is denied. Bring your questions about health insurance to this informative conversation!
- Event List
-
Tuesday, October 21st, 20258:00 PM EST1h 30m
-
Virtual Event
- 23 people attending
Please join at 8pm ET/ 7pm CT/ 6pm MT/ 5pm PT Tuesday, October 21st for a 90 minute group. Join us to learn about the benefits of an anti-inflammatory diet for JA kids. Learn new recipes for the whole family and share tips and tricks for those "discerning" eaters! Stressed about meal planning? Come see if meal prep tricks will work for you and your busy family!
After our presentation, there will be time to connect with others. Friends, Family, and Care Partners are always welcome to join meetings. We respect privacy and confidentiality and do not record our online meetings. Upon registration a Zoom link will be sent. You may also join by going to the Raising a Child With JA event page the day of the event and hitting the JOIN NOW bubble.
-
Tuesday, November 18th, 20258:00 PM ET1h 30m
-
Virtual Event
- 1 person attending
Join us for a presentation by Attorney Kathryn Strobach who will speak about the strategies JA parents can use to navigate health insurance during Open Enrollment this year. Kathryn will share tips on how to compare plans, changes to the Open Enrollment and Medicaid programs this year, and how to approach the appeals process if a claim is denied. Bring your questions about health insurance to this informative conversation!
Facilitators [5]
Members [425]
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Connect Group - National - JA Parent Elementary School and Younger
Comment
Comments [16]
Hello Parents!!
Welcome to all of our parents that have joined the Arthritis Foundation’s Raising a Child with JA Connect Group. We meet every 3rd Tuesday of the month at
5pm PT/ 6pm MT/ 7pm CT/ 8pm ET.
I'd like to make some resources available to you - Please reach out if you are looking for something else.
Arthritis Foundation Home Page
Raising a Child With JA Connect Group page
Anything and Everything you need to know About JIA
Power Pack
Explaining JIA to your Child so they are confident in explaining it to others.
Flares and JIA: What You should know
Federal Laws That Support Kids w/ JA in School (chart)
Developing a 504 for Your Child checklist
Juvenile Arthritis: A Teacher’s Guide
How JA Might Affect A Child at School
Webinar: JA and School- Advocating for your Child
Sample 504 Accommodations
504 Plan FAQs
Juvenile Arthritis and Depression
Recognizing Emotional Distress in your Child with JA
We hope you learn something new and find someone to connect with. We all have a story. The more we tell it, the more we learn and help other diagnosed families.
Hoping you are well,
Your Facilitators (Tiffany, Jessica, Jennifer, Angelica, and Vanessa) are all available so please don’t hesitate to reach out if you need our help.
In good health,
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
Hi everyone. I'm the mom from NJ who has been fighting for my kid's IEP/504 for three years. I said I'd post the JA School Action Plan I'd made, so here it is: https://drive.google.com/file/d/1jWM-TqvzhcN-nEkeqiW9Sjw0Z7DvkblD/view?usp=drive_link
I'm very open to feedback, as I adapted it from a Post-Exertional Malaise Action plan I made. Let me know if anyone wants that one. I can't be the only one whose kid has a fatigue/malaise crash a couple days after being too active every since COVID.
I also recently had my brainfog decrease after using Rinvoq, and it really made me realize how disabling of a symptom it can be for our kids. This Arthritis Foundation website has a sample 504 and it's pretty good, but it is missing some big things:
- med side effects (gotta make sure these are addressed)
- immunocompromise: MANY SCHOOLS HAVE HEPA FILTERS THAT CAN BE PLACED IN YOUR KIDS CLASS WITH A DOCTOR'S ORDER. My son has had one for 2 years.
- Brainfog: long covid, ADHD, and pans/pandas groups have great recommendations for brainfog accommodations. One list I really like is here: https://drive.google.com/file/d/1dettSc7xRHWRo8UJkiwI8vbWBT8Mi5On/view?usp=drive_link
Hope this helps.
Hi everyone! I hope you're doing well 😊
My name is Macarena, I'm 24 and currently studying Elementary Education with a focus in German. I've lived with Juvenile Idiopathic Arthritis (JIA) since I was a year and a half old, and right now I'm working on a social impact project for university that’s very close to my heart.
With the support of Fundación ANACROJ (a Chilean foundation focused on JIA), I’m creating a practical guide for teachers to help raise awareness about JIA in schools and how educators can better support students who live with this condition.
As part of this project, I’d love to include something symbolic and meaningful coming directly from those who live with or have lived with JIA during childhood:
A drawing from a child with JIA, expressing a message or wish for their teachers
A short written message or letter from a child currently in school with JIA, or from a parent of a school-age child, sharing what they’d like teachers to understand or take into account
A brief testimony from someone who had JIA during their school years, reflecting on what they would’ve liked their teachers to know, do, or support at the time (this can be written, drawn, or even a short video)
Here's an example that shows what I mean with a testimony, it doesn't have to be long, just maybe a few phrases: https://youtu.be/m7RdM8DTM2k
👉 If you’d be open to sharing something, or know someone who might want to, I’d be so grateful.
The deadline to receive these is July 9, so I can include them in time. Everything will be used only within the framework of this university project and always respectfully — with consent and the freedom to withdraw it at any time.
Thank you so much for reading! And thank you for being part of this community that supports and uplifts people living with arthritis 💛
Warm wishes,
Macarena Acevedo
My Mail: [email protected]
Please join us tonight at 5 pm PT/6 pm MT/7 pm CT/8 pm ET for a discussion about strategies to help manage the medical load. This is a great conversation for families where one caregiver manages the healthcare needs of the family. Bring your questions and share your tactics for thriving as a one-parent family!
Register Here: https://connectgroups.arthritis.org/events/event-detail?eventid=229319
Is there a recording that I can access?
Hi my son age 10 was diagnosed with juvenile Ankolosing spondylitis. It has turned our world upside down he was in so much pain I can't take seeing it. He is doing a bit better now but we don't see the rheumatologist until June 16 and I am HORRIFIED about putting him on medication. With cancer being a side effect I just feel like I can't risk that. Please someone give me some insight on what you have done.
Hi Yehudis,
Welcome to the group. I recently posted a message, we're combing 3 groups into one, we look forward to you joining our future discussions. Hope you can gain some insight from the facilitators and other parents on your sons JAS. My duaghter was diagnosed in 2016 with SJIA at 2, she's currently 11, there is hope!! Look forward to seeing you on future meetings.
v/r
Vanessa
Hi. I haven't been active on this group. I just logged in to check this out and am glad to see your message. My son is 10 years old as well and diagnosed in January with JAS as well! Our world has been turned on its head completely. It's been a journey. He's been in so much pain, been out of school for most of this school year. He started Hyrimoz (Biosimilar to Humira) in January and he's finally been feeling somewhat better the past few weeks. According to my doctors the side effects of Biologics are really not what they used to be thought of in the past and the benefit definitely outweighs the risks. My mom has AS as well and is stubborn about taking Biologics. She lives in severe chronic pain every day. It's not a life and it's not worth it. Sending so much love and compassion ❤️
Hi Adyson,
My name is Angelica and I'm one of the facilitators of this group. A diagnosis will rock your world. I won't try and say it doesn't. My daugher was diagnosed a month before her 3rd birthday with Juvenile Idopathic Arthritis. Trust me I understand as a mama where we can't tollerate seeing our kids in pain. We did a couple of rounds of steriod injections and then 9 months after diagnosis we started medication. My advice is don't go down a rabbit hole looking at all the side effects. It will eat you. We have been on Methotrexate, Humira and Enbrel. Now my daughter is 10 and she is 6 months off her medication and so far has been flare free. We still aren't considered in remission but are on that path. I'd invite you to join our meeting on Tuesday May 20th so we can get a chance to chat. Although our diagnosisis are all different sometimes we can connect and talk because as parents we are in the same boat of wanting what is best for our kiddos.
Also feel free to contact me directly at [email protected].
Angelica
Make sure to join us at 8 pm ET/5 pm PT tonight at:
https://connectgroups.arthritis.org/events/event-detail?eventid=225646
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!
Hello! My son was diagnosed with SJIA in October 2024 and turned 3 in March 2025. He had his first serious flare up about a month ago and we are trying a new medication. Would love to connect and chat!
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 Robin - I realize your post is a couple years old at this point but I just joined the group today. I'm looking for someone my almost 10 year old daughter could connect with that understands what living with JIA is like. Hope your daughter is in a good spot :)
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