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How To Help Children Affected by Pediatric Lichen Sclerosus

Introduction

Today I am joined by the amazing dermatologist, Dr. Sandy Flann, who is an expert on pediatric Lichen Sclerosus. Dr. Flann was the lead clinician for pediatric dermatology at the Orpington Hospital in the UK. She now works for West Kent Dermatology. She has been treating patients for over 20 years.

Yes, you heard that right, Pediatric Lichen Sclerosus!

As we know, Lichen Sclerosus can affect anyone, of any age – children included. Unfortunately, there is a lack of research and resources for parents of children with Lichen Sclerosus. So, today we're going to find out about treatment, what to look for, the progression of symptoms, and how we can help our children become comfortable in their skin.

This is an important episode if you have a child with LS, or if you plan on having children (as it’s important to know some of the warning signs to be able to advocate for your child). Furthermore, because there may be a genetic component to LS, you never know who in your family you may be able to help.

Lichen Sclerosus Support Network – A Huge Thank You To Our Sponsor!

Before we jump into today’s episode, I want to thank our sponsor, the Lichen Sclerosus Support Network (LSSN), for making this podcast possible. LSSN is working towards getting people diagnosed earlier and getting treated better.

Be sure to follow them on IG and FB @lichensclerosussupportnetwork.

LSSN logo, a teal heart and white letters reading LSSN through the heart with a purple background.

The Difference Between Treating Adult and Pediatric Lichen Sclerosus

The mainstay of treatment of Lichen Sclerosus is the same in adults as in children. Specifically, it includes the use of soap substitutes when you wash and the use of a potent topical corticosteroid. The topical steroid is to manage symptoms and help prevent architectural changes and bruising.

The biggest difference is the added challenge of getting children to the dermatologist or doctor to be properly diagnosed. In fact, I often hear from folks with LS that once they get their diagnosis, they begin to look back at their childhood and realize they’ve had it since they were little.

The Big Challenge of Diagnosing Pediatric Lichen Sclerosus

As a parent or caregiver, it can be hard to know what symptoms to look out for in pediatric Lichen Sclerosus. Especially if you've never heard of LS.

It's especially concerning because childhood Lichen Sclerosus can begin in infancy, and Dr. Flann sees patients as young as the age of four.

Children this young, haven’t fully developed linguistic and communication skills. Therefore, they lack terms in their vocabulary such as ‘burning’, ‘itching’, ‘irritation’, ‘vulva’. This can lead the parent/caregiver to have no idea anything is wrong.

A caregiver and child looking at a computer. Caregivers and doctors are the most important people in a child with pediatric Lichen Sclerosus' team.

What To Look For In Childhood Lichen Sclerosus

  • Children might be very fidgety and they can often be seen squirming in their chair
  • Constipation
  • Sudden trouble using the bathroom
  • Hands down their pants
  • Chronic itching

Important Advice for Caregivers of Children with Pediatric Lichen Sclerosus

  1. Avoid over checking your child’s vulva/genitals.
  2. As much as possible, treat them normally. Try to not fuss or hover too much.
  3. Remember this disease is manageable and they can grow up to live happy, fulfilling lives.
  4. They can play with their friends on different sports teams, you just may need to be mindful of how it can impact them and make a few modifications. For example, if your child wants to be on the swim team, have them use a barrier cream like Vaseline on their vulva before swimming. These barriers will help protect them against chlorine which can be irritating. Be sure to have them rinse off afterward with a soap substitute.

Treatment for Childhood Lichen Sclerosus

Image of a family sitting outdoors with their child. Open communication helps children open up about pediatric Lichen Sclerosus symptoms.

Standard LS treatment is super topical steroids. Although, Dr. Flann may prescribe a lower potency steroid if the child is very young, under the age of six.

Doctors prescribe these strong medications to children to minimize the chance of the child scarring around the introitus, clitoris, and labia. They also do this because the risk for developing vulvar cancer is higher if the child is not adequately treated.

Dr. Flann avoids the second-line treatment topical calcineurin inhibitors because they tend to sting, and she doesn’t like putting children through any unnecessary pain.

Pediatric Lichen Sclerosus Steroid Scheduling & Dosing

For adults, the general dosing schedule for Lichen Sclerosus is once a day for the first month, every other day for the second month, and then two times a week as maintenance for life. To learn more about steroids and how to use them optimally, listen to this interview I had with Dr. Jill Krapf in this episode.

This is the same protocol children with LS follow. 

Dr. Flann has seen children where their LS significantly calmed down with proper steroid use. Dr. Flann follows up with these patients every year to assess how they are doing and potentially lower their steroid potency or amount.

Interestingly, children tend to respond much more rapidly to steroids than adults. Thus, Dr. Flann makes sure to follow up frequently at the beginning of treatment.

How to Care for Your LS – Tips From An Experience

In addition to using steroids and getting monitored by a specialist, Dr. Flann recommends using soap substitutes and avoiding bubble baths, fragrance, and/or anything that lathers.

In the UK, they have prescription-grade emollients which are often prescribed in addition to steroids. Otherwise, brands like Cerave, Aveeno, and QV gentle wash are all equally good products to wash your vulva with.

Image of a person holding up a jar of moisturizer. Moisturizer can make a big difference in vulvar Lichen Sclerosus.

As far as moisturizers, Dr. Flann leaves this to the patient’s discretion. However, she suggests patients do not apply moisturizer immediately after steroids. Steroid ointment can be quite oily, therefore, there should be enough moisture there.

However, if patients find they are dry, they can use moisturizers in between steroid applications to help with dryness.

When choosing your moisturizer, Dr. Flann recommends the moisturizer be SLS-free, fragrance-free, and have minimal ingredients to avoid contact dermatitis aka an allergy. 

Borax and Children – Is It Safe? What You Need to Know

Dr. Flann is aware of steroid fear. Dr. Flann explained that doctors have to act following evidence-based information and in compliance with their country’s guidelines.

To date, Dr. Flann notes there is no evidence-based information to support ingesting or soaking in borax to treat Lichen Sclerosus. Further, Dr. Flann notes the UK national body, the British Association of Dermatologists, released a statement in 2019 saying ingesting and soaking in borax is not recommended and shows no efficacy. Therefore, she cannot endorse the use of borax to treat Lichen Sclerosus.

What Happens to Childhood Lichen Sclerosus in Puberty

Some patients find their LS goes dormant in adolescence. Others may experience flares on and off throughout their teen years. The key, however, is to use steroids and stay monitored by a specialist.

Teenagers and Lichen Sclerosus

Getting teens into the office and building trust is the biggest challenge concerning teenagers with pediatric Lichen Sclerosus. Dr. Flann uses the first consultation to take the teen’s history, perform a clinical exam, make the diagnosis, and craft a treatment plan. Dr. Flann also provides lots of patient information leaflets explaining Lichen Sclerosus. She knows patients often forget everything the doctor tells them. Her focus is heavily on building trust, educating patients, and giving them a proper and clear treatment plan.

As part of the education piece, Dr. Flann informs patients LS is an inflammatory skin condition that carries a risk of vulvar cancer if untreated. She also stresses the importance of self-monitoring via monthly vulva checks.

Dr. Flann addresses patients' concerns for the future by making sure they know they can still get pregnant and have healthy babies. She makes herself a resource that will be there for them if sex becomes painful in the future. 

Is Lichen Sclerosus On The Rise: An Expert Weighs In

Recently, statistics have shown more and more folks are getting diagnosed with LS. However, I believe it is less a case of more people developing LS and more due to education, awareness, and less stigma.

Dr. Flann agrees. She believes awareness activism has done wonders to lessen the stigma and taboo around genitals and genital health. Younger generations are more comfortable discussing their vulvas than generations past, and this is great!

The more stigma lifts, the more awareness, and education, the sooner patients can get diagnosed instead of going decades untreated.

Image of a person holding a flower in front of their underwear, representing breaking the stigma surrounding genital health.

What We Can Do For Future Generations To Come

Although the climate is shifting – i.e., there is more awareness, education, and less stigma – there are still a lot of children and teens who are shy and/or do not feel comfortable discussing genital issues.

Advice for parents/caregivers:

  • Work to create a safe space in your home.
  • Have open and honest conversations with your child/children.
  • Listen. Listen to your children. Watch their body language while they speak/communicate and check in with them.
  • Try asking things like: “what was the best part of your day”, and “what was the worst part of your day, or something you had trouble with”. Let them know regardless of it’s good or bad, you are loved, you are safe, and you can work through it.

Conclusion

In sum, treating the disease is pretty simple. The difficult part is getting children through the door, diagnosed, establishing trust, and opening communication links.

Once you have those in place, you can treat the disease and children can go on to live normal lives. Dr. Flann assures listeners children and teenagers with LS can live a normal, happy life.

If you want to reach out to Dr. Flann, you can reach her on her Instagram @Dr_SandyFlann. You can also check out her website, sandyflann.com.

Virtual Meetup Information

Did you learn anything new from this episode? Do you have a child with Lichen Sclerosus? Did you have childhood Lichen Sclerosus? Let me know! Email me at Kathy@lssupport.net or DM me at @lichensclerosuspodcast on Instagram.

Better yet, why not tell us at our Lichen Sclerosus Support Virtual Meetup!

We meet every other Saturday from 2-4 pm and 7-9 pm Eastern Standard Time. This is your opportunity to share your diagnosis story, what is working for you and what isn’t, and ask the group questions. Perhaps share your experience with pediatric Lichen Sclerosus!

I have met so many incredibly strong LS warriors through these meetups, and I would love for you to join our community. 

Sign up at lssupport.net/connect for notifications and updates! I cannot wait to see your face and hear your voice!

Lichen Sclerosus Support Virtual Meetup

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By Jaclyn

I am the author of The Lost Labia Chronicles, a blog about Lichen Sclerosus, Sex, and Mental Health. I was diagnosed with Lichen Sclerosus in 2019 but had been symptomatic for over a decade. My mission is to provide support and hope to others with Lichen Sclerosus.

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