Children with Sjogren's Syndrome: The New Generation of Sjogren’s Patients.
Upon hearing that there was a support group online that helped children and teens with Sjogren’s Syndrome, I knew that it was critical to provide this information to others and to remind people that Sjogren’s Syndrome also affects children and teens. This support group is sponsored by the Sjögren’s Syndrome Foundation.
This was how I met Sharon Tiger, the mother of Grace Tiger, and this led to a collaboration of efforts that produced this article. This is a shared experience of both of us, her as a parent, and with myself growing up with undiagnosed Sjogren’s Syndrome as well as other conditions as a child. I am also the parent of a child living with complex health issues.
Sjogren's often presents differently in children than it does in adults. While most adults will experience dry mouth or dry eyes as hallmark symptoms, the most common presentation in children is parotid gland swelling. Sharon’s group experience was that 50% of children will present with this symptom.
However, this was not how her child, nor how many other children presented with Sjogren’s Syndrome. In many ways, it can present with similar symptoms that adults will have, but early development can have a larger effect on the long-term effects of the disease.
It can be much more difficult to recognize in children because it is not a diseases expected to develop in children.
One of the most challenging aspects for parents, and for children living with Sjogren’s, is in getting a proper diagnosis.
Parents commit to learning and understanding as much about this disease as they can. This allows them to assist in their children getting a proper clinical diagnosis and timely treatment.
We don’t want this condition lingering untreated until they are adults, or for their treatment to be postponed and increasing risks of further unnecessary physical damage, though we may not be able to fully prevent this.
It has been accepted thinking, by most physicians, that Sjogren’s is a disease that affects primarily older women. This has led to many children with recognizable criteria being excluded from treatment. Education is therefore key to advocacy.
It can often be difficult to tell what symptoms present first, but the most common symptoms observed by Sharon was a generalized fatigue and recurrent swelling of the parotid and sub-mandibular glands along the jawline. This was also a common experience for me, Randy, growing up with this condition.
It is common for Pediatricians to first attribute the symptoms of joint pain and fatigue as “growing pains” and something that the child will likely outgrow. This is not uncommon thinking for many issues that affect children and teens.
Recurring parotid gland swelling in children may lead to a referral to an ENT doctor, but ENT doctors don't always rule out Sjogren's Syndrome as a possibility. It should be considered as a possibility.
Early symptoms can mimic frequent childhood issues like growing pains. Children often can't articulate or describe these symptoms. They are unlikely to recognize, by themselves, that frequent trips to the water cooler may mean that their mouth is dry, or that their eyes shouldn't feel like they have sand in them.
A child with reoccurring parotid gland swelling, is a good candidate long-term for a rheumatology workup. Other tell-tale symptoms can include neurological issues, as well as dysautonomia, inflammation and cognitive issues such as brain fog. There are many other symptoms.
Sjogren’s is considered rare in children, and this can often lead to extensive testing that may or may not yield positive results. Testing may include a biopsy testing of the saliva glands. Damaged saliva glands could be removed in the past. Doctors now work to avoid this eventuality.
Unfortunately, there are still rheumatologists who believe that Sjogren's is a disease exclusively in the adult community and that it cannot occur in children. The complexity of this disease and the lack of awareness in the Pediatric community makes it extremely challenging for children to get a proper diagnosis.
A Sjogren’s patient who is a child needs to be referred to a rheumatologist just like and adult.
Parents are often forced into a position of advocacy. It also may lead to the need for pursuing further advocacy efforts. This can lead to significant costs and time off of work. Our children our worth it.
The challenges kids face who live with Sjogren's Syndrome are many, especially among their peers. Things such as participating in sports or field trips, climbing stairs, opening a school locker or holding a pencil, or even going to slumber parties can present major challenges. Suffering from debilitating fatigue, joint pain, and neuropathy can become routine. Brain fog gets in the way of classroom activities as can having the stamina to focus on the teacher's lessons for the day.
Not knowing how they will cope from one hour to the next can mean that plans can be cancelled at the last minute. This often means discussing and apologizing to teachers and friends about frequent absences from school and events. This is frequently compounded by the multiple doctor and specialist appointments.
Feeling unwell can become the new normal. Dealing with stress due to falling behind in schoolwork can occur because of absences. It can be awkward for a child or teen to explain why they must always have a water bottle, gum, and mints with them, or needing to use an elevator instead of the stairs.
It’s difficult not being able to participate in things like gym class or a birthday party that involve physical activity. It can feel isolating at times.
There aren't a lot of resources, at this time, for children living with Sjogren's Syndrome from the medical community. The resources available at this point in time are primarily through the efforts of the Sjogren’s Syndrome Foundation, and knowledgeable and caring doctors including Rheumatologists, Eye Specialists, Dentists, and ENTs. The support group that Sharon founded for families and children living with Sjogren's Syndrome is also a strong resource committed to families of children living with Sjogren's Syndrome.
Children and teens living with Sjogren’s Syndrome want and desire empathy; They don't “look” sick, so they often are labelled as being “lazy”, or “complainers,” or the often-overused term “hypochondriacs.” They would like for most doctors to know and understand the disease better than they do. It is fair to assume that they hope very much for a cure, and treatments that will allow them to return to be the energetic children they were before they experienced symptoms and received a diagnosis.
Children with Sjogren’s are full of hope, but they will often wonder how this will shape their futures, and if their symptoms will progress negatively affecting their futures. Will they be able to attend college? Will they be able to work full time and support themselves? Will they be able to have families and children? Will they be able to form life-long friendships with people who will understand their challenges? Many will and do.
In order to provide strong support to children and teens living with Sjogren’s Syndrome, we will as parents and friends of these parents spend a lot of time encouraging them and affirming that these children can achieve well beyond their limitations. They may have to work harder, and it may take more time for them to do things, but the focus is not on what others are doing: my child is the only one who can define what success will look like for them.
Strong strategies that I would give to parents of a child with Sjogren’s Syndrome:
• Advocacy is critical for children in schools, in our communities, within our families, as well as in the medical community. Especially in the Medical community.
• The parent will be more aware of the disease and its impact on the child's day-to-day activities. Physicians see the child infrequently in the clinic.
• Recognize that these children live the struggle personally and daily.
• Parents need to help the child learn to manage their energy and plan their daily activities.
• Children will hopefully learn how to express themselves with proper support, instead of internalizing their health issues.
• As a parent, it is important to get involved with the Sjogren's Syndrome Foundation
• Join a support group. It is immensely helpful to compare notes with other parents navigating the same or similar issues.
• It is important to stay on top of the many doctors' appointments.
• It is critical to have your child seen by a knowledgeable and caring rheumatologist, dentist, and eye care provider regularly.
• Keep a journal of symptoms in between physician appointments. Ask politely for test results when possible.
• Don't hesitate to share new symptoms and to ask questions, and to keep looking for answers
• Be aware of new treatments that will improve your child’s quality of life. Don't make this the sole focus of your child's hope for the future. Don't stop looking either.
• It is important to eat healthily, but it is also important to remember that kids need to be kids. Ensure they have things too look forward to and enjoy.
• Celebrate all of the child or teen's accomplishments both big and small.
• Consider engaging a mental health expert or other professionals to help in learning strong coping skills. This may be neccessary for both parents and children.
• Remember that dealing with a chronic illness has many challenges, and for a child, social and emotional health is important too!
Remember that the child or teen lives with a problem as many other people do. The health issue does not define who they are, or limit their ability to succeed.
Feel free to share this information among friends and family. We are not medical professionals. All information is shared on an "As is" basis.
Sharon Tiger and Jamie Diianni are both parents of children who live with Sjogren's Syndrome. Together they run "Pediatric Sjogren's" which is a group created for both the children living with Sjogren's and their parents. The group arose from a strong need for support, education, and advocacy for children and teens. Sharon's efforts grew to include Jamie as a fellow admin. As of this writing, it includes over one hundred families.
Their group has been successful in working together with both the Sjogren's Syndrome Foundation, and The Childhood Arthritis Rheumatology Research Association.
Helpful links include: