Parents & Caregivers of Children Living With Sjogren’s Disease
Whether your child was recently diagnosed or your family has been navigating Sjogren’s for years, this space is for you.
Here you’ll find information to help you better understand childhood Sjogren’s, recognize changes and patterns, prepare for healthcare conversations, support your child as they grow, and find resources that may make navigating their care a little easier.
A Note From Jody
As someone living with Sjogren’s, I know how complicated this disease can be to understand. And as a parent, I also know how different it feels when the person you’re trying to help is your child.
I wanted parents and caregivers to have a place here, too.
I don’t pretend to know exactly what your family needs. My hope is to share helpful information, connect you with resources that already exist, and listen to families about what’s still missing.
— Jody
Sjogren’s Can Look Different in Children
Sjogren’s is a systemic autoimmune disease. Although most people associate it with dry eyes and dry mouth, those may not be the symptoms that first get a parent’s attention.
Research has found that children can present differently than adults. Recurrent or persistent swelling of the parotid glands—the large salivary glands near the cheeks and jaw—can be an important feature. Joint symptoms and other symptoms outside the moisture-producing glands can also be part of the picture.
Dryness can still occur, but it may not always be obvious.
A child may not know how to describe dry eyes or dry mouth—or even realize what they are experiencing is unusual. If something has been happening for a long time, they may simply assume everyone feels that way.
That is one reason your observations as a parent or caregiver can be so valuable.
Pay Attention to Patterns — Sometimes Behavior Is Information
Children do not always say, “My symptoms are getting worse.” Sometimes they show you.
Maybe your child stops wanting to participate in an activity they love. They come home from school and immediately need to sleep. Homework suddenly takes much longer. They are drinking more while eating, rubbing their eyes, or needing significantly more recovery after a busy day.
One of the most useful things you can learn is your child’s baseline. What is normal for your child?
Then pay attention when something changes, including:
- recurring swelling around the cheeks or jaw
- increasing fatigue or recovery time
- changes in school attendance or concentration
- new or worsening joint or muscle complaints
- eye discomfort, redness, sensitivity, or frequent eye rubbing
- changes in eating, chewing, or swallowing
- changes in dental health
- rashes or other skin changes
- numbness, tingling, burning, or other unusual sensations
- new respiratory, digestive, urinary, or other systemic symptoms
- activities becoming more difficult to tolerate
Not every new symptom will be caused by Sjogren’s, and you do not have to determine what is causing the change.
Notice it. Document it. Bring the pattern to your child’s healthcare team.
Something Has Changed: Parent & Caregiver Guide
A more comprehensive toolkit to help you organize what you’re noticing, prepare for healthcare conversations, and communicate your child’s medical story more clearly—whether you’re searching for answers or something changes after diagnosis.
Your Child’s Healthcare Team
Because Sjogren’s is systemic, your child’s care may involve more than one healthcare professional.
A pediatric rheumatologist will often play a central role, with other specialists involved depending on your child’s individual needs.
Their healthcare team may include a pediatrician or primary care provider, ophthalmologist, dentist or pediatric dentist, oral medicine specialist, ENT, neurologist, pulmonologist, nephrologist, gastroenterologist, dermatologist, physical or occupational therapist, or mental health professional.
Your child does not automatically need every specialist on this list.
A useful question to bring to an appointment is:
Based on what my child is experiencing, should another specialist be involved?
Eyes, Mouth, Teeth & Salivary Glands
Even when dryness was not what originally led to your child’s diagnosis, eye and oral health still deserve attention.
Children may describe dry or irritated eyes as burning, itching, grittiness, sensitivity to light, blurry vision, or simply, “My eyes hurt.”
Dry mouth may show up differently too. You may notice your child needs frequent drinks with food, avoids certain foods, develops changes in dental health, complains about mouth discomfort, or has difficulty chewing or swallowing.
Because saliva helps protect the mouth and teeth, regular dental care is especially important.
Recurrent parotid swelling can also occur in childhood Sjogren’s. Keep track of episodes of swelling around the cheeks or jaw, and contact your child’s healthcare professional when swelling is severe, painful, one-sided, associated with fever, or noticeably different from their usual pattern.
Fatigue Can Change a Child’s Life
Fatigue is not always easy to see from the outside.
A child may still go to school, participate in an activity, or spend time with friends—and then need significant time to recover.
Instead of asking only “Is my child tired?” also consider:
What is this fatigue making harder for my child to do?
Look at school attendance, concentration, homework, activities, socializing, and how much recovery your child needs afterward.
New or significantly worsening fatigue deserves a conversation with your child’s healthcare team because fatigue can have many possible causes.
School Is Part of the Picture
Your child’s medical condition does not disappear when they walk into school.
Fatigue, pain, dryness, concentration difficulties, medications, appointments, and changing symptoms can all affect a school day.
Depending on your child’s needs, school support might include access to water or medications, rest breaks, the school nurse, flexibility for medical absences, physical activity modifications, additional time for schoolwork or testing, eye or screen-related accommodations, or a plan for worsening symptoms.
In the United States, some children with chronic medical conditions may qualify for support through a 504 Plan, Individualized Education Program (IEP), or an individual health plan, depending on their circumstances and needs.
Your Role as Your Child’s Advocate
When children are young, parents and caregivers often do much of the talking, organizing, remembering, and asking questions.
But that role can gradually change as your child grows.
I speak for you.
I speak with you.
I help you find your voice.
I’m here when you need me.
There is no magic age when responsibility suddenly needs to change hands.
The goal is not to force independence before your child is ready. It is to gradually help them understand their own health and participate more in their healthcare when appropriate.
Becoming Your Child’s Best Advocate — FREE
A free resource to help you better understand your role as your child’s healthcare advocate and how that role can evolve as your child grows.
Helping Your Child Understand Their Own Healthcare
One day, your child may be sitting in an adult healthcare appointment without you.
That transition should not have to begin on their 18th birthday.
It can happen gradually.
Depending on your child’s age, development, abilities, and circumstances, you can begin helping them understand their diagnosis, medications and allergies, who their doctors are, how to describe important symptoms, what changes should be reported, and how to ask questions.
As they grow, they may take on more—participating in appointments, keeping important health information accessible, understanding prescriptions and refills, or helping schedule appointments.
You do not have to transfer everything at once, and independence will not look the same for every young person. Some young adults with complex chronic illness may continue to need significant family support.
The goal is not:
You’re an adult now. Figure it out.
The goal is:
Let me help you learn your medical story so you can increasingly participate in what happens next.
Your Child Is More Than Sjogren’s
Chronic illness can consume a lot of a family’s attention—appointments, medications, symptoms, school, testing, insurance, research, and worry.
But your child is still a child.
They have friendships, interests, goals, humor, talents, opinions, and dreams that have nothing to do with Sjogren’s.
Along with asking:
How are your symptoms?
remember to ask:
What do you want to be able to do?
Managing chronic illness is also about helping a child participate as fully as possible in the life that matters to them.
Want More Individual Support?
If you’d rather talk through what you’re navigating one-on-one, I offer individual support for people and families navigating chronic illness. I can help you organize concerns, prepare for healthcare conversations, and think through questions and next steps.
One-on-one support is educational and advocacy-focused and does not provide diagnosis, treatment, or medical advice.
What Do Families Like Yours Need?
There are already resources available for families navigating childhood Sjogren’s.
What I do not want to do is assume I know what is still missing.
Maybe you need more help navigating school or finding specialists. Maybe you wish there were more opportunities to connect with other parents. Maybe you are trying to prepare your child to eventually manage more of their healthcare.
Or maybe what your family needs is something I have not thought of at all.
That is what I want to know.
If I could create one thing that would make navigating your child’s healthcare a little easier, what would you want it to be?
I would much rather listen first—and create something families actually need.
You Don’t Have to Know Everything Today
You do not need to become a Sjogren’s expert overnight.
Learn your child’s baseline. Pay attention when something changes. Keep asking questions. And help your child gradually learn their own medical story as they grow.
When you don’t know what comes next, start with the next question.
Trusted Resources for Families
If you want to continue learning, these three outside resources are good places to go next.
Sjögren’s Foundation — Sjogren’s in Children
Information specifically for families navigating Sjogren’s in children.
HealthyChildren.org — Chronic Conditions and School
Information from the American Academy of Pediatrics about school planning and support for children with chronic health conditions.
Childhood Sjogren Syndrome: International Cohort Research
A published international study examining how Sjogren’s can present in children and how adult classification criteria apply to pediatric cases.
Medical Disclaimer
The information provided on this page is for educational and informational purposes only and is not intended to replace professional medical advice, diagnosis, or treatment.
Childhood Sjogren’s can affect children differently, and symptoms discussed here may also have causes unrelated to Sjogren’s disease.
Please discuss your child’s individual symptoms, testing, treatment, and healthcare needs with qualified healthcare professionals. Seek urgent or emergency medical care when appropriate.