Juvenile idiopathic arthritis (JIA) is the most common type of arthritis found in children. It occurs when the immune system attacks the body’s tissues, causing inflammation in joints and possibly other areas of the body. While doctors can often diagnose JIA and provide treatment options, parents of children with JIA are faced with having to accommodate their child’s condition.
Tammy is a mother of two, and her daughter was diagnosed with JIA at just 11 years old. Tammy also has rheumatoid arthritis, which has helped her better understand her daughter’s disease. What she wasn’t expecting, however, were the hurdles at home and at school that her daughter, Mira, would now face.
Tammy wants to help other parents whose children are going through similar experiences, and she wishes someone was there for her when Mira was diagnosed. Here are the top things Tammy says are essential to know if your child is diagnosed with juvenile arthritis.
- Find a Peer Group for Your Child
There are many resources for kids with JIA that allow them to feel connected. Tammy highlighted three groups that Mira has benefitted from since her diagnosis.
Facebook Group: Teens of Juvenile Arthritis
This Facebook group provides support to teens with juvenile arthritis. If they have a Facebook account, they are able to join a network of others who have also been diagnosed with JIA and connect with teens just like them. Parents are not allowed in the group, but it is monitored by adults.
iPeer2Peer is a program by the Arthritis Foundation that connects young adults and teens all over the United States who have JIA. A young adult mentor (age 18-25) is paired with a teenager to video chat for approximately 20-30 minutes twice a month (or more) and talk about how to manage their disease or how to navigate daily life, such as high school, sleep overs and applying for college.
Tammy says that Mira has benefited from this program by talking with someone who has gone through the things that she is currently facing. Tammy says she talks with Mira’s mentor about once per month and is very grateful that Mira has someone relatable to talk to.
Camp M.A.S.H. (Make Arthritis Stop Hurting) is another program run by the Arthritis Foundation that connects kids and teens with JIA. Campers get the full camp experience, including stories and s’mores around a campfire, swimming, wall climbing and much more.
Tammy says that Mira has loved Camp M.A.S.H. in the past and has built life-long friendships with other children. Camp M.A.S.H. takes place in many places nationwide, but the local camp is in Wisconsin Dells, WI this August.
- Find a Peer Group for the Parent(s)
Hearing that your child has a chronic disease is a scary thing for parents to hear. If your child has been diagnosed with JIA, we recommend visiting http://www.kidsgetarthritistoo.org/, which provides many resources from our partner, the Arthritis Foundation. Tammy also shared resources that she has found to connect her to other parents of children with JIA.
As the name implies, this is an online community for mothers only. Members of the group will often seek advice on medications, give advice on infusion therapy or other treatments and ease anxiety about managing the disease.
There is also a group for fathers called “JA Dads – The Tribe: It Takes a Tribe to Raise a Kid with JA.”
The Arthritis Foundation offers opportunities for parents and kids to connect and build relationships with families who know what it’s like to have JIA. Learn more at http://www.kidsgetarthritistoo.org/meet-other-families/.
- Be aware of dietary needs
Like Mira, many JIA patients have gluten intolerances. Because of this, Mira has to take lunch to school every day rather than eat hot lunch. Additionally, a child with JIA might have to take medication with food midday, meaning they have to pack an additional snack. It’s important to keep these dietary needs in mind and ask your doctor about them once your child is diagnosed.
Tammy also notes that you must be cognizant of your child’s trigger foods- the things that can especially upset their stomach. Be sure to consult the doctor about specific dietary needs, as every child with JIA is different.
At one point, Tammy struggled with giving one Tylenol pill to her young daughter. Now, Mira takes several pills per day.
Tammy says that wrapping her mind around all the medicine Mira takes was difficult, but with the help of Dr. Tuttle at OSMS and taking the time to work with him to educate herself on the medications, it helped ease her worry. Print outs exist for every medication, and Tammy recommends asking for that sheet so you can fully understand the effects of the medicine.
There are also medication apps available on smartphones that show an overview of all the medications, help remind your child to take their medicine and track when it is time to refill. This could be helpful for a child who is just starting to take meds and needs reminders.
Finally, when it comes to medications, Tammy says it is essential to trust the doctor and remember that the medicine will help your child.
- Have a backup plan for daily activities and everyday life
Each day is unpredictable when your child has JIA, which is why it is important to always have a backup plan. Tammy says that she now considers many different factors in her daughter’s every day routine, including how much sitting or standing there will be during a certain activity or if she doesn’t feel well. For example, stretch breaks are now needed during long car rides in addition to bathroom breaks. Tammy also makes sure Mira has an aisle seat on an airplane flights so she is able to stretch her legs out and go for walks.
Tammy says it’s important to conserve a child’s energy for what they love. Don’t wear them out by running errands in the morning so they aren’t able to play soccer at night. Make sure they can still enjoy the experiences they want to have.
- Create a 504 Plan for School
A Section 504/ADA Plan is special plan for children with physical, mental or learning disabilities. It ensures that the child receives appropriate accommodations while attending school so they are able to succeed academically on a day-to-day basis.
For example, due to her arthritis, Mira’s hands would hurt if she wrote too often. Therefore, her 504 plan states that she is allowed to type versus hand write or even use talk-to-text if necessary.
These accommodations are called “Accommodation Strategies” and allow your child to work in a way that is best for them. The strategies may also allow your child to request ice for joints, visit the restroom without a pass when needed, be excused from certain physical education activities and allow them to come into the building before school on cold weather days to relieve joint pain from the cold, among others.
Tammy says it’s important to talk with your child to make sure they are advocating for themselves when it comes to accommodations. If there is a substitute teacher at school, your child must learn to speak up and let the substitute know about the accommodations. Mira is also expected to let school staff know if she is not feeling well or if she is in pain.
Tammy has also found it helpful to hand out educational pamphlets about JIA to Mira’s teachers so they are able to understand her condition and how to help her succeed.
Learn more about the 504 Plan and more educational rights here.
- Let them be a kid
It can be easy to be an overprotective parent when your child is often in physical pain. Tammy says that you can’t wrap a bubble around them; you have to let them learn and advocate for themselves. You can’t shield your child from everything, and you have to allow them to figure out how to manage their disease.
When your child is doing the things they enjoy, such as playing sports, spending time with friends, or any other activity where you can’t always be there, they must be able to speak up if they are sore or hurting. It’s important that your child gains the independence and confidence to take care of them self.
Finally, if your child has been diagnosed with JIA, Tammy highly recommends visiting pediatric rheumatologist Dr. Paul Tuttle at OSMS and, if it aligns with your child’s treatment plan, using the onsite infusion therapy services at OSMS in Green Bay or Appleton.
Mira’s treatment plan includes receiving infusions every seven-eight weeks, and at OSMS, she feels no anxiety about the process. She sees the same nurses every single time and has built relationships with the clinic staff. The staff knows her so well, in fact, that they ask her about her daily life, school and sports she is involved in.
Mira says she is comfortable during her infusion sessions, as she is able to have tasty snacks and drinks, watch TV, color and do homework. She is also thankful that the entire process takes less than two and a half hours, whereas in a hospital, it could be an all-day affair.
Tammy has seen substantial cost savings over hospital infusion services, along with personalized care for her daughter and quick service. Tammy recalls that Mira is usually in the infusion suite within 10 minutes of finding a parking spot, and whenever Mira needs to see Dr. Tuttle, she is able to get an appointment in a quick amount of time.
Want to learn more about Mira’s story? Watch Mira’s I’m Back story and read Mira’s narrative on “A day in the life of infusions.”