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Pediatric Lichen Sclerosus: What You Need to Know to Support your Child

Pediatric Lichen Sclerosus: What You Need to Know to Support your Child

Introduction

There are a lot of myths and misinformation floating around the world wide web when it comes to lichen sclerosus. You have probably heard a few already. For example, you might have read that “lichen sclerosus only occurs in post-menopausal folks.” This is a myth that has been thoroughly debunked by science. We know that lichen sclerosus can affect any age group, including young children, premenopausal folks, and folks in perimenopause/menopause/post menopause. You read that right! Children can get lichen sclerosus. The medical term for this is pediatric lichen sclerosus. 

In this post, we will discuss the fundamentals of pediatric lichen sclerosus. I share the main signs and symptoms to look out for, how LS is diagnosed in children, and what the treatment plan looks like. Additionally, I share what to do if you suspect your child might have lichen sclerosus. 

*This post is evidence-based; I draw on the medical literature to share what you need to know about pediatric lichen sclerosus. Importantly, what I share is my interpretation of the science and data.

**Please note that this post on pediatric lichen sclerosus refers to children with vulvar and perianal lichen sclerosus. We will be creating content on penile lichen sclerosus (both in adults and children) in the future.

Is There a Genetic Component of Lichen Sclerosus

Lichen sclerosus is a chronic, inflammatory skin condition that is considered to be autoimmune by the majority of the lichen sclerosus medical community. It can cause symptoms like chronic itch and pain. Lichen sclerosus is a progressive condition. Without proper treatment, lichen sclerosus can cause scarring and anatomical changes and, in some cases, lead to vulvar cancer

Many lichen sclerosus specialists believe there is a hereditary/family component (Krapf et al., 2020, De Luca et al. 2023). For example, a study by Sherman et al., 2010 found that 12% of over 1000 folks with vulvar lichen sclerosus reported having a first-degree relative with vulvar lichen sclerosus. Studies by Fivozinsky et al. (1998) and Senturk et al. (2004) have shown that lichen sclerosus tends to run in families. 

Image of a person with long dark brown hair in a light blue Tshirt outdoors, carrying their child who has a red and white dress on representing the fact that LS can run in families.

I have no first-degree relatives with vulvar lichen sclerosus (that I know of). My mother passed away from sepsis when I was in my early 20s, so I have no way of knowing if she had it or not. She had a very aggressive case of multiple sclerosis, which can cause sexual dysfunction. Therefore, any complaints of vulvar pain could have been written off as MS.

Please note: Having lichen sclerosus yourself and having children does not guarantee your children will have lichen sclerosus. I know many parents with vulvar lichen sclerosus whose children never went on to develop it.

That said, if you have children, it might be good to be knowledgeable about pediatric lichen sclerosus so that you can catch the LS early and set them up for success. With that, let us discuss the signs and symptoms of pediatric lichen sclerosus.

Signs and Symptoms of Pediatric Lichen Sclerosus

There is an essential distinction between the signs and symptoms of lichen sclerosus. If you are unfamiliar with that distinction, check out my video on the topic. 

Signs of pediatric lichen sclerosus include:

  • A classic figure 8 pattern around the clitoral hood, labia minora, and perianal may be present as white, off-white, grey, or ashy and appear smooth or like cigarette paper.
  • Hypopigmentation (which is a loss of pigmentation). For example, if your child's vulva is typically dark brown, and you notice it is now a light brown color. This *may* be hypopigmentation due to pediatric lichen sclerosus.
  • Plaques or patches of skin that are thickened and/or have a loss of pigmentation.
  • Purpura (when small blood vessels begin to leak blood underneath the skin. The image below for an example. 
  • Widened blood vessels on the skin
  • Swelling of the vulvar tissue
  • Fissures
  • Sometimes hyperpigmentation and ulcers can occur.

(Smith and Fischer, 2009, Dihn et al., 2016)

Image showing what purpura looks like on the skin of a leg (for obvious reasons, i cannot show an image of purpura on a child's vulva. If you suspect purpura, the best way to confirm is to bring them in for a clinical assessment with a doctor.

Image showing what purpura looks like on the skin of a leg (for obvious reasons, i cannot show an image of purpura on a child's vulva. If you suspect purpura, the best way to confirm is to bring them in for a clinical assessment with a doctor. Image from Physiopedia.

Symptoms of pediatric lichen sclerosus include:

  • Vulvar and perianal itching
  • Vulvar and perianal pain
  • Bleeding and pain with bowel movements
  • Constipation
  • Vulvar and perianal burning and discomfort
  • Vulvar soreness and tenderness

(Smith and Fischer, 2009, Dihn et al., 2016)

Important Note on Pediatric Signs and Symptoms of Lichen Sclerosus

The challenge with children is that they *sometimes* lack the vocabulary to tell their parents they are in pain or itchy. 

If your child is young and/or cannot use their words to describe their symptoms, you may want to look out for the following behavioral signs that *may* indicate pain or itch:

  • Fidgeting in their seats
  • Grimacing or wincing if the vulvar/perianal area is touched
  • Constipation, noticing blood after they have a bowel movement, or if the child is crying while trying to pass a stool
  • If they constantly have their hands down their pants and look like they are scratching

Diagnosis

If you have read my FREE LS eBook “Three Key Things To Have In Place When You Have Vulvar Lichen Sclerosus,” you know LS is diagnosed by biopsy or clinical examination. I also have a video on this topic that goes in-depth into both types of diagnosis; watch the video here.

Most cases of pediatric lichen sclerosus are diagnosed by clinical examination. The majority of doctors want to avoid putting a child through a biopsy. Consequently, vulvar biopsies for children are typically reversed for cases where the doctors suspect a cancerous mass or if the child is unresponsive to treatment (Dihn et al., 2016).

A clinical examination will involve the doctor, the child, and the child's parent(s). The doctor will ask about symptoms. The child may describe their symptoms if the child is old enough to speak. If the child cannot speak, the parent may discuss some behavioral signs mentioned above (e.g., constantly scratching their vulva and fidgeting in their seat). The doctor will then examine the child's vulva/perianal area to look for some of the abovementioned signs. If the signs of lichen sclerosus are present, the doctor will make a lichen sclerosus diagnosis.

Treatment

Image of a word graph with the word treatment front and center.

Ultrapotent topical corticosteroids are the gold standard treatment for lichen sclerosus for all ages, including children (Dihn et al., 2016; Smith & Fischer, 2009).

A study by Fischer and Rogers (1997) showed that a topical corticosteroid (betamethasone dipropionate 0.05%) successfully treated pediatric lichen sclerosus in 11 children.

Similarly, a study by Garzon and Paller (1999) also demonstrated the successful treatment of pediatric lichen sclerosus using high-potency topical corticosteroids. 

Another study by Cooper et al. (2004) looked at 327 people with vulvar lichen sclerosus, 74 of whom were young children with vulvar LS. Patients were treated for at least three months with ultrapotent topical corticosteroids (e.g., clobetasol propionate 0.05% and betamethasone 0.1%). 36 out of the 74 children with vulvar lichen sclerosus had documented responses. Out of the 36 children, 26 (72%) responded well and were symptom-free. Nine children (25%) saw partial improvement, and one (3%) responded poorly.

There are no general guidelines for how often children should apply their steroids. Therefore, it is essential to attend all follow-up appointments so the child's doctor can continuously monitor their case and adjust their steroid dosing according. Many doctors dose children similarly to adults, starting with daily treatment early on and tapering them onto a maintenance dose of 1-2 times a week once the child is in remission.

Lifestyle Changes

As much as possible, try not to make this into a huge deal. As much as possible, the goal is to give the child a regular childhood, despite lichen sclerosus. The goal is to manage their condition while still creating a sense of normalcy and not making the child feel like an outcast. For example, this may include normalizing medication application the way brushing your teeth is normalized. Similarly, it means still letting them partake in sports such as swimming (just make sure to add a barrier cream to the vulva before they swim and rinse the chlorine off after and apply emollient).

In addition to following their treatment plan, you may also consider the following lifestyle changes:

  • Using gentle, fragrance-free cleansers
  • Using an emollient and/or barrier cream
  • Wearing loose, breathable underwear
  • Avoiding tight clothes
  • Prioritizing hydration and fiber in their diet (if they struggle with constipation)

Follow-Ups

Pediatric lichen sclerosus is a long-term condition that requires lifelong management. This includes maintenance treatment plans and follow-ups with your doctor. While some children seem to experience a reduction of symptoms or remission during puberty, it is crucial to continue treatment to keep the condition from progressing (Smith & Fischer, 2009). Their doctor should emphasis the importance of follow-ups throughout the teen years as well.

What to do if you Suspect Pediatric Lichen Sclerosus

Remember that just because you have lichen sclerosus does not mean your child will get it too. If you suspect they may have lichen sclerosus because they have some of the signs and symptoms mentioned above, you should take action.

If you suspect your child has LS, here is what to do:

  • Create a timeline of when the symptoms and signs started appearing, and update it with any changes.
  • Track their symptoms and have those noted down on a separate document.
    • If your child cannot speak, note the behavioral signs I shared above.
    • If your child can speak, ask them questions to better understand their feelings, and be sure to add that in.
  • Call your pediatrician or family doctor and book an appointment to discuss your child's vulvar symptoms.
    • If your doctor cannot diagnose vulvar conditions in children, ask to be referred to a pediatric dermatologist or gynecologist (yes, those do exist)! Many hospitals have pediatric wings equipped with pediatric dermatologists and gynecologists.

Of course, while waiting for a doctor and diagnosis, show your child lots of love, patience, and compassion. It can be very distressing to live with the symptoms of LS.

Consider joining a support group for more guidance on how you can help your kid. Lichen Sclerosus Support Network holds free, bi-weekly LS virtual meetups every other Saturday, which you can sign up for here.

Conclusion

In sum, folks of all ages can have lichen sclerosus, including children. In this post, we shared the signs and symptoms of pediatric lichen sclerosus, how it is diagnosed and treated, lifestyle tips, and what to do if you suspect your child has lichen sclerosus.

If you want another post expanding on treatment for pediatric lichen sclerosus, including calcineurin inhibitors and surgery, let us know in the comment section below. We will get that in our content calendar!

If you have not already, be sure to listen to this interview Kathy did with Dr. Sandy Flann on pediatric lichen sclerosus here.

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Reach Out to Me

Whether you are debating booking a support call with me, have a quick question, or want to share something related to my content, you can reach me via:

Email: Jaclyn@lostlabia.com

DM: @thelostlabiachronicles on Instagram, Facebook, and TikTok.

Support Resources

FREE Lichen Sclerosus Virtual Meetup hosted by myself and Kathy of Lichen Sclerosus Podcast – sign up here.

Feel free to book a 1:1 call with me if you are struggling with grief and emotions. Simply click this link to learn more about lichen sclerosus peer support calls.

Image of a person with dark brown skin and dark hair wearing a yellow shirt sitting at a desk on a call. The title text reads, "1:1 LS Peer Support Calls, book now".

LSSN Membership – sign up here.

For a more detailed list of free and paid support resources, check out my LS resources page here.

Sources Cited & Consulted

Cooper SM, Gao XH, Powell JJ, Wojnarowska F. Does treatment of vulvar lichen sclerosus influence its prognosis? Arch Dermatol. 2004 Jun;140(6):702-6. doi: 10.1001/archderm.140.6.702. PMID: 15210461.

De Luca David A., Papara Cristian, Vorobyev Artem, Staiger Hernán, Bieber Katja, Thaçi Diamant, Ludwig Ralf J., “Lichen sclerosus: The 2023 Update”. Frontiers in Medicine, Vol. 10, 2023.https://www.frontiersin.org/articles/10.3389/fmed.2023.1106318, DOI=10.3389/fmed.2023.1106318

Garzon MC, Paller AS. Ultrapotent Topical Corticosteroid Treatment of Childhood Genital Lichen Sclerosus. Arch Dermatol. 1999;135(5):525–528. doi:10.1001/archderm.135.5.525

Krapf JM, Mitchell L, Holton MA, Goldstein AT. Vulvar Lichen Sclerosus: Current Perspectives. Int J Women's Health. 2020 Jan 15;12:11-20. doi: 10.2147/IJWH.S191200. PMID: 32021489; PMCID: PMC6970240.

Fischer G, Rogers M. Treatment of childhood vulvar lichen sclerosus with potent topical corticosteroid. Pediatr Dermatol. 1997 May-Jun;14(3):235-8. doi: 10.1111/j.1525-1470.1997.tb00247.x. PMID: 9192422.

Fitvozinsky KB, Laufer MR. “Vulvar disorders in prepubertal girls.” Journal of Reproductive Medicine. 1998. 

Sherman V, McPherson T, Baldo M, Salim A, Gao XH, Wojnarowska F. The high rate of familial lichen sclerosus suggests a genetic contribution: an observational cohort study. J Eur Acad Dermatol Venereol. 2010;24(9):1031–1034. doi:10.1111/j.14683083.2010.03572.x

Sentürk N, Aydin F, Birinci A, Yildiz L, Cantürk T, Durupinar B, Turanli AY. Coexistence of HLA-B*08 and HLA-B*18 in four siblings with Lichen sclerosus. Dermatology. 2004;208(1):64-6. DOI: 10.1159/000075049. PMID: 14730240.

https://www.physio-pedia.com/Purpura

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