Linda Wagner-Weiner, M.D., and Cathy Schroeder, BN, RSN, provide tips to navigate the holidays and vacations for families of children with juvenile idiopathic arthritis and other rheumatology conditions.
Cheryl Martin (Host): Navigating the holidays and vacations may be more challenging for families of children with juvenile idiopathic arthritis, formerly known as juvenile rheumatoid arthritis. Up next, we learn ways to manage it, plus more, with our experts from Shriners Children's Chicago, Pediatric Rheumatologist Dr. Linda Wagner-Weiner, and Cathy Schroeder, Nurse Specialist in the hospital's specialized clinic for Pediatric Rheumatology and Orthopedics. This is Pediatric Specialty Care Spotlight with Shriners Hospitals for Children, Chicago. I'm Cheryl Martin. Doctor, let me begin first with you. What's the age range for a child being diagnosed with idiopathic arthritis, and are the symptoms similar to rheumatoid arthritis in adults?
Linda Wagner-Weiner, MD, MS: The age range is quite variable. We have some adorable toddlers presenting with joint inflammation and pain. They can be as young as less than one year. However, most of our children that are very young, present between the ages of two and five. However, probably the majority of our patients are in elementary school and high school. With regard to the symptoms, the joint stiffness and pain and swelling can be very similar to what you might see in adult rheumatoid arthritis, but there's several different subsets or categories of childhood arthritis or JIA, and only 5 or 10 percent have the adult type of rheumatoid arthritis, which tends to be actually more severe or difficult to control and more progressive. Several of our children may have only one or two joints involved. Some may have psoriasis associated with arthritis. Some may have primarily back symptoms with pain in their knees and hips. So, it can be similar, but there are some differences that we do observe.
Host: So, do the holidays pose greater anxiety for the parents and children, especially when travel is involved?
Linda Wagner-Weiner, MD, MS: Travel can be sometimes challenging, but absolutely doable. And the most important thing is plan ahead, to know what you're going to be doing, where you're traveling to, and we can talk about all the different things to think about as you are about to embark on your holiday activities.
Host: So, what are some of the things parents should be thinking about?
Linda Wagner-Weiner, MD, MS: The schedule is different when you're on vacation. The kids will probably have a different sleeping pattern. They may not sleep as much. They may get more fatigued. And they'll be doing activities that are not in their normal schedule. They may be running around to keep up with their cousins and friends. And, uh, kind of like we would say a weekend warrior for adults. And they may get more achy. So we do have to plan ahead.
Host: And so, what do you suggest they do? What does that look like, the planning ahead?
Linda Wagner-Weiner, MD, MS: Planning ahead, you want to make sure you take all the medicines with you that your child should be on, not to forget anything at home and to plan ahead. And Cathy often talks to the patients and parents to make sure they do this in an organized fashion.
Host: So, Cathy, tell us, what's the best way for parents to do this so they are organized?
Cathy Schroeder, RN, BSN: I always ask them to please use me and the care team at Shriners in preparing for any trips or vacations or school functions even that they're going to be going on. And that's, we can help by writing letters for airlines to explain why the child needs to carry syringes with them if they have an injectable medication or the medicines need to be cold to transport them until they're ready to give them. You should bring your medicines in the original container when you're traveling on an airplane, because there could be some questions about what these loose pills are. When you're traveling by car, of course you could put them in a daily pill, pill container so you can have them readily available every day you need to take them. We can also provide letters if you're going to an amusement park, for instance, you can get special permission to not wait so long in line, so you don't become fatigued. I always try to tell parents to not panic if you've forgotten something and you get to your destination, we can help by calling local pharmacies or they can call their local pharmacy to help transfer a prescription just for the amount that you might need while you're on vacation. And then we always try to encourage them to stay to the same schedule for their medications. It's just good for the child and their arthritis, but there are special circumstances. If you're going on an airplane and you're going to be gone for 14 days and your child's injection is due that last day you're gone, it's okay to come home and give the injection the next day. You don't want to stress yourself and cause anxiety, trying to transport a medication and keeping it cold for the whole 14 days you're gone until you have to give it the minute before you step on the plane. You can fudge your schedule and make it easier for everyone involved
Host: I'm glad you brought that up, especially if it's a longer trip, but does it matter at all or does it make a difference if the plans are to travel by train versus car? You mentioned airplane, but what about train versus car? Anything else to be concerned about if those are the modes of transportation?
Cathy Schroeder, RN, BSN: Well, I think you have a little more opportunity on the train or the car to take more frequent breaks, especially if you do get stiff and achy sitting for a long time, you can take the breaks you need. I'm not real familiar with train travel as far as security, but you could still get a letter for your medicines and syringes on a train just to be safe. But I think you just have a little more opportunity to take the breaks you need and change your position and distract yourself than you do on a plane.
Host: Now what about families that are planning to go to holiday parties? Anything to be aware of there?
Linda Wagner-Weiner, MD, MS: There's a few things that you could think of. One is that you're going to be around a lot of people. And we share viruses and other infections when we're at big parties and even traveling on trains or planes or whatever. So be aware of that. Use good hand washing. Some people choose to wear masks. The other thing that I would recommend for all children, especially any of our kids that are immunocompromised because of medications, is to take a flu shot. Kids are as vulnerable to flu as adults are, and so I always do recommend that. And at parties, parties are to enjoy, so that's not the time to always restrict your diet. You should have a good time. Diet on your own time, not when you're at a party. Keep in mind though, that if you're going to overeat a lot of sugars and processed foods, some people just don't feel as good when they do that and their joints ache more. So, be wise, but definitely enjoy yourself and not feel restricted because of your diagnosis of JIA. It's often present in your mind. Have a good time at the holidays.
Host: Great. Cathy, talk about the programs that Shriners offers for children with arthritis.
Cathy Schroeder, RN, BSN: We have, of course, Dr. Wagner, our expert Rheumatologist, and myself that see the patients when they come in. We have so many other specialties and different professionals that are available to help the patient. We have orthopedic specialists who can see them to give steroid injections or to help correct some orthopedic problem. Additionally, we have orthotic services. Dr. Wagner is really strong on providing children with some shoe inserts to help their feet become, be more comfortable with a lot of walking, and we have plastic surgery services for children who have arthritis in their jaws, we have occupational therapy, physical therapy, we have child life therapy and recreation therapists to help the children in their communities and to do adaptive sports if they need that service. We have psychology services. We have social workers and care managers who are also available to help the parents and the child navigate services in school that they might need or just special accommodations they would need in the school setting.
Host: Now, as a Nurse Specialist in the hospital's Specialized Clinic for Pediatric Rheumatology, what does it mean to you to be in this particular department and working with these children?
Cathy Schroeder, RN, BSN: I think about this daily. First of all, that I am so lucky to work with Dr. Wagner and learn from her. And I think what is so special to me about working in this clinic is mostly the relationships I develop with the children and their parents. They need a lot of support. They need a lot of teaching and information and coordination and organizing. And I just happen to have all those skills, but it's a really wonderful group of patients to work with because of their difficulties, but also the great hope in helping their disease go into remission or be cured. And the other thing is that we get to see these children throughout their childhood. We can see them from 1 year old till they graduate from Shriners at 21. It's a really nice relationship we can form with the children and their families.
Host: Now, Dr. Wagner-Weiner, you've been a lead investigator on research related medication in children with arthritis. What are some of your findings?
Linda Wagner-Weiner, MD, MS: Well, first I'd like to add on something about Shriners and that is I've worked at several hospitals and Shriners ranks the highest with regard to child family friendliness. They're just geared towards kids and families and I have the highest level of comfort working in the clinic, of course, with Cathy and with all the wonderful services around. It's all inclusive. So it's a one stop shopping. That's what it really is. With regard to research, it's ongoing. The treatment of JIA has changed tremendously since I entered the field, I won't say how long ago. But definitely before there were all these new medications that are available called biologics, which have been so successful in quieting down disease. Obviously, sometimes one will work for a patient, another one won't work. And we have to, try trial and error. And some kids have more persistent symptoms and others go into remission more easily. But for the most part, the advent of these new medications since 2001 has changed the whole playing field with regard to treating juvenile arthritis. When I started out, I used to give lectures, a whole lecture on pre, peri and post rehab for people getting joint replacements. I think I've had two kids get one joint replacement each in the last 20 years. So the field has improved tremendously with the research. And yes through my work, I do participate in multi center studies, because if we're going to do studies in children where you don't have a hundred kids in each hospital with JIA, you need to pull from all these hospitals. And we have looked at these medications, which are new on the horizon over the last two plus decades. And we want to make sure that they stay effective and most important that they're safe. They're safe in the long run. And we're still doing long term safety studies. And so far, we're content with the results, but we're going to keep following the kids long term because these are new medications on the block. They've been around, it sounds like a long time for 20 years, but there are medications that have been around for 50 years. So we do need to be cautious with them, but we're so thrilled to have them in our medical armamentarium to, to treat our kids' joints.
Host: That's great. Anything else either of you would like to add, whether it's about research on JIA or just more travel advice that we didn't cover?
Linda Wagner-Weiner, MD, MS: Families can always reach out if they have any questions, even while they're away. Now that we have electronic medical records, we often do get their messages. I would just try to enjoy, but be wise. The child should listen to his or her body and pamper it a little bit. Partake with the relatives and friends. If you're achy, take a warm bath at night. Take a warm bath in the morning. And if there's any questions that come up, try to reach us or their primary doc.
Cathy Schroeder, RN, BSN: I completely agree with Dr. Wagner and I hope my patients understand that I treat them as a child first. They, they are just a regular kid. And they just happen to have arthritis, so I think it's important for families to have that outlook that their child is just a child, and they need to enjoy all the normal childhood pleasures that their siblings do, if they have siblings, and their cousins, and just let them enjoy. You just have to be wise about how much to overextend yourselves if you're going to be hurting later.
Host: Dr. Linda Wagner-Weiner and Cathy Schroeder, thank you so much for the great work you do at Shriners. Thank you, for providing some great advice for parents who are making plans to travel with their children who live with idiopathic arthritis.
Cathy Schroeder, RN, BSN: Thank you, Cheryl.
Linda Wagner-Weiner, MD, MS: Pleasure.
Host: To learn more, go online to ShrinersChildrens.org/EN/pediatric-care/Rheumatology. Again, that's ShrinersChildrens.org/en/pediatric- care/rheumatology. And if you found this podcast helpful, please share it on your social media and check out the full podcast library for other topics of interest to you. This is Pediatric Specialty Care Spotlight with Shriners Hospitals for Children, Chicago. Thanks for listening.
About the Speakers
Linda Wagner-Weiner, M.D., MS, and Cathy Schroeder, RN, BSN
Linda Wagner-Weiner, M.D., MS, is a pediatric rheumatologist who manages the juvenile idiopathic arthritis service at the Chicago Shriners hospital. She has been a lead investigator on research related to JIA medications in children.
Cathy Schroeder, RN, BSN, is an experienced nurse at Shriners Children's Chicago. She is the primary nurse in the hospital's specialized clinic for pediatric rheumatology and orthopedics.
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