Welcome to the
Parents of High School Students with JA Connect Group
Parents of High School Students with JA
78 Members
This online group serves parents of children living with Juvenile Arthritis who are in high school 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.
Upcoming Events
-
Sunday, July 28th, 20248:00 PM ET1h 30m
-
Virtual Event
- 4 people attending
Bring your questions, snacks, and favorite beverage and we’ll have an open discussion to help you understand the best way to advocate for your child this school year. Come find out what is needed for a student with JA at school. I will bring the Arthritis Foundation Resources for JA: an IEP, a 504, and a definition of a Dr.-Diagnosed disability and support you with learning the difference between all the different laws and forms.
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.
Registration is required to receive the Zoom link to participate via video or phone. Being on video is not required, nor having a Zoom account. A confirmation email will be sent upon registration with the Zoom link. If you do not receive the registration confirmation, please check your spam folder. Please plan to log in a few minutes early.
We look forward to seeing you soon!
- Event List
-
Sunday, July 28th, 20248:00 PM ET1h 30m
-
Virtual Event
- 4 people attending
Bring your questions, snacks, and favorite beverage and we’ll have an open discussion to help you understand the best way to advocate for your child this school year. Come find out what is needed for a student with JA at school. I will bring the Arthritis Foundation Resources for JA: an IEP, a 504, and a definition of a Dr.-Diagnosed disability and support you with learning the difference between all the different laws and forms.
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.
Registration is required to receive the Zoom link to participate via video or phone. Being on video is not required, nor having a Zoom account. A confirmation email will be sent upon registration with the Zoom link. If you do not receive the registration confirmation, please check your spam folder. Please plan to log in a few minutes early.
We look forward to seeing you soon!
Facilitators [1]
Members [78]
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Connect Group - National JA Parent High School
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Comments [18]
Hi all, I'm not sure if this is the best place for this question/concern, but I am having trouble finding answers. I registered here a long time ago and this is my first time joining a group or reaching out. My son was diagnosed with SJIA in summer of 2019 and is now 15 years old. He has been successfully treated with Anakinra and now on once a month injections of Ilaris. However, he just returned from his quarterly check up wiht his peds rheumatologist at Mayo and his platelet count is the lowest it's ever been. His splenomegaly never fully resolved and they want us to do labs right before his next Ilaris shot and about a week after, so we can gauge if the dropping platelets is due to the Ilaris or something else. Has anyone else had experience with this or know more about it? It's so disheartening when your kiddo is doing great and you hit bumps in the road like this!
Hello Parents of a High School Student with JA,
Join us on Tuesday October 10th at 8pm ET/ 7pm CT/ 6pm MT/ 5pm PT
for our next 90 minute event!
Our topic will be sharing your story to advocate for your children.
We are delighted to have Heidi Barrett facilitating the conversation.
Here is the zoom link:
https://arthritisfoundation.zoom.us/meeting/register/tZYsdO6rrD4sHtbBoY4Zz_WkxK4YXIOyRifT
Hello group,
my 15 year old daughter had a relapse last year after 7 years in remission. She had knee, ankle and wrist involvement. She started MTX in february and she doesn't have any active inflamation and bloodwork is also good for the last 3 months. However, her dr. Wants to start her with biologicals on top of MTX and Nsaids. We searched for a 2nd opinion since we don't understand why another medicine needs to be added if she is responding well. Our 2nd opinion told us that adding a biological (enbrel) will be overmedicating her since her disease seems to be controlled and there was no need to add anything else at this point. Altough we agree with her, Now we are all confused. Can anyone shed some light? I want to trust my dr. But I don't want to give a medicine to my daughter if its not the correct base treatment..
thank you all for reading this.
M
Hello. Can someone share an example of forms from the Office of Accessibility at different colleges? I asked for some examples during the zoom with Dr. Stoves but never received a response. Also, if anyone could share their 504 plan, that would be great. My daughter attends a very small high school and I have never had to fill out any of these forms.
Hi Deanna P
I cannot send it through this discussion platform.I will send an all email.
Hello Kathy,
I am sorry you are having to go through this diagnosis. I understand the frustration and uncertainty. My son was diagnosed at 2 with JIA and my daughter was diagnosed at 15 with Fibromyalgia. They are 19 and 29 now and doing great!! We don't have AxSpa but have a lot of the same arthritis symptoms; pain, frequent illness, school issues and depression/anxiety. I will contact a couple parents whose kids have AxSpa and try to get them to respond. You could join our group on Sept. 12th. We always have a time to just talk after a short education piece. If I can answer any questions please don't hesitate to reach out.
Have a good weekend!!
Tiffany
Hi there, I am a mom of a 17 year old with JIA - juvenile ankylosis spondylitis. I'm wonder if there are others with this particular form and, if so, how they are doing.
August 8th 8pm ET zoom link https://arthritisfoundation.zoom.us/meeting/register/tZcucOGtqTgtH93Ei-EbPjl3BV_q7rcvXq2c
Hello High School Parents:))
The zoom link for Tuesday July 11th at 8pm ET/ 7pm CT/ 6pm MT/ 5pm PT is https://arthritisfoundation.zoom.us/meeting/register/tZEtduirqDgiGdzgwWx7sH1sFMgV3L75hvZ9
We will be crafty and doodling Positive notes for our Warriors on sticky notes or journal pages. Bring your paper and markers.
The zoom link for Tuesday June 13th is below. Hope to see you for our presentation, "Winning at Work!" with Donna Fox.
https://arthritisfoundation.zoom.us/meeting/register/tZMkd-yprD8pE90n9Vy7Lzi6qT1x3G4LI8Vs
Hello Parents of High School Students with JA,
The zoom link for May 9th is
https://arthritisfoundation.zoom.us/meeting/register/tZEucuuvqzkjGNM1zodA3Diklj3sxXNpjEzF
We will meet at 8pm ET/ 7pm CT/ 6pm MT/ 5pm PT.
Hope to see you after while!! :) :) :)
Good Morning, My name is Johnathan and my son has been suffering with JIA for awhile now. He was taking Methotrexate once a week and Humira every two weeks. He appreared to become sick from the Methotrexate and after talking to his doctor we have stopped both of the meds. He has been feeling better and eating well. Today he woke up with knees slightly swollen, indicating a flare up. We have been looking for alternate treatment for him. Has any tried a more holistic approach to treatment with any success?
Hello Johnathon,
I am sorry to hear your son is flaring. Unfortunately this is the lifetime part of it. My son has been off MTX and Enbrel for 6 years but he still flares. His triggers are stress, lack of sleep and when he starts to get sick. I do have to say 1) you have to keep your doctors team informed and sometimes that is everyday with this disease during a flare and when coming off meds. 2) every child responds differently to treatment. What works great for one child’s diagnosis can make another child with the exact same diagnosis very ill. This disease is very much trial and error, that’s why we have no cure. I AM NOT A DOCTOR, just a JA mom to an awesome set of WARRIORS. Ibuprofen, in a lot higher doses than “normal”, is still our first go to drug. My son has been on 800mg of ibuprofen since he was 9-10 years old. When he is in a flare we bump everything up: start asthma meds., eat better balanced meals, get more sleep, hot tub and ice therapy with stretching and don’t let anything go for more than 2 days before emailing our arthritis team. There are said to be several diets (KETO, low carbs, no milk and lots of proteins and plants) that will help with inflammation but no diet will prevent the deterioration of our kid’s bones, or we’d all be cured. If the meds are giving your son a stomach ache, have labs run but remember the meds are a must. We can give something for a stomach ache (tums, omeprazole, ranitidine, cetrizine) HANG IN THERE!! Remember you are their advocate and how you respond to their care is what they will do in the future to take care of themselves. PLEASE DON’T HESITATE TO ASK MORE QUESTIONS or join our group. Our next group is Tuesday May 9th at 8pm ET
The ZOOM LINK for our Parent of A High School Students with JA Connect Group, Tuesday April 11th with Sarah Davis is
https://arthritisfoundation.zoom.us/meeting/register/tZErd-GoqTgiHNRpvjHL4h1AiqsnRcTbzSlV
I hope to see you at 8pm ET/ 7pm CT/ 6pm MT/ 5pm PT Come late, leave early but BE THERE!!!
High Schoolers welcome for this group.
Hello High School Parents,
The zoom link for Tuesday February 28th is
https://arthritisfoundation.zoom.us/meeting/register/tZAqc-CgrDMvHNSRgQeki6HSCDzuAScamSkI
Dr. Douglas Stoves, Associate Dean of Students at University of Texas Rio Grande Valley, will be joining us for a discussion about setting up accommodations while in college.
Remember our start time is 8pm ET/ 7pm CT/ 6pm MT/ 5pm PT
Hope to see you there. If you need any help please contact me.
Tiffany Coffman
[email protected]
Hi! I had to leave the Zoom before it had completed. Where do I find the slides and the example forms I asked about during the session?
Here is the link for Tuesday January 10th. 8pm ET/ 7pm CT/ 6pm MT/ 5pm PT.
https://arthritisfoundation.zoom.us/meeting/register/tZwtd-2qpj4jHdQBvT3EQWc3IS79vKYtRS3d
Katy, our guest speaker will have a lot of great information about loosening the reins of meds., dr. appts., and life.
Talk soon!!
Hello High School Parents!! :)
The zoom link for our Tuesday, December 6th group is
https://arthritisfoundation.zoom.us/meeting/register/tZUrdu2prjMuH9a0cFHNPLtjW4IdvZ6W8fvs
We will me virtually at 8pm ET / 7pm CT / 6pm MT / 5pm PT. Come late, leave early, We Get It. Life Happens!! We are in this together.
See you soon!!
Hello High School Parents!! :)
The zoom link for our Tuesday, December 6th group is
https://arthritisfoundation.zoom.us/meeting/register/tZUrdu2prjMuH9a0cFHNPLtjW4IdvZ6W8fvs
We will me virtually at 8pm ET / 7pm CT / 6pm MT / 5pm PT. Come late, leave early, We Get It. Life Happens!! We are in this together.
See you soon!!
If you need help at any time please don't hesitate to contact me!!
[email protected]
Hello Parents, of a High School Student with JA, Connect Group,
I know it's a long time between meetings. I will be moving to evey other month (if not every month) in 2023. If you have any questions in between, please don't hesitate to ask me. I have been at this for 16 years so I've been through a lot, and learned a lot by volunteering for the Arthritis Foundation. If you have any topics you'd like to know more about, let me know. This is your group and I want to make it as helpful as possible.
Talk soon!! :))
Tiffany [email protected]
We are looking forward to seeing you on Tuesday Dec. 6th at 8pm ET/ 7pm CT/ 6pm MT/ 5pm PT I will post the zoom link here on the discussion board for the upcoming event as well as send it out in an email. Click this link to login a few minutes early on the day of our event.