Managing Pediatric Alopecia Areata: Part 1
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In this first part of our 2-part interview with Dr Brittany Craiglow, she highlights the similarities in alopecia areata (AA) presentation between children and adults, noting unique challenges in younger patients, such as the misdiagnosis of diffuse hair loss, and emphasizing the importance of validating the emotional impact of the disease.
The Dermatologist: Are there any key differences in the presentation of AA in children compared with adults?
Dr Craiglow: In general, children and adults present similarly. One thing I will say is that we see diffuse AA not infrequently in kids and every so often it gets misdiagnosed initially. Sometimes a clue to AA is a child who is touching their scalp a lot. I have some children who have been referred for hair pulling or concern for hair pulling who have AA. They have thinning of hair, often on the crown, and parents will say they are touching or twirling their hair, but they do not know if they are pulling it. Many people have a sensation when they are losing hair, which they describe as a burning or tingling feeling. For young children especially, they are not able to articulate that, but they feel it, so there is a draw for their hand to touch their scalp. This can be a little tricky in young children, but otherwise a circle of smooth AA is something we see commonly in kids and adults. And then of course, any age group can go on to have multiple patches or severe loss.
The Dermatologist: What diagnostic considerations are important when evaluating a child with suspected AA?
Dr Craiglow: Many of the pediatric patients we see with AA are often initially thought to have something else, most commonly tinea capitis, which can present with hair loss, but generally looks a little bit different. Usually, there is scale associated with tinea capitis in pediatric patients, and they often have lymphadenopathy, particularly the occipital scalp. AA typically presents as very smooth, round patches of hair loss that are usually not scaly. Every so often, the patient may have concomitant seborrheic dermatitis and there may be a little scale there too. Often the diagnosis is straightforward, but sometimes it is not. Using your dermatoscope to look for clues on trichoscopy can be really helpful.
A lot of the kids I see who have diffuse AA have little exclamation mark hairs or little open follicles. I think it is one thing to read about these things, but it is another thing to see them in practice. I always tell my residents, use your dermatoscope and see what an exclamation mark hair looks like so then when you are not sure, you have a background for making the diagnosis dermoscopically. It is unusual that you would need to do a scalp biopsy because there just really are not a lot of other things that present similarly.
Another diagnosis that children will get, especially at the beginning, is telogen effluvium, which is uncommon in pediatric patients. But sometimes the onset of AA, especially if it is more diffuse and severe, looks like telogen effluvium or a lot of hair shedding. This is where you have to really look throughout the scalp. Do they have any patches? And then look elsewhere on the body, making sure you look at all the hair-bearing sites: eyebrows, eyelashes, and body hair. Look at their fingernails. A lot of patients with AA also have nail changes, most commonly pitting. It can be very subtle. Sometimes family history or personal history can be a little bit of a clue. Is there a family history of autoimmunity? Does the patient also have atopic dermatitis, for example? About 30% of kids will have both. Usually by performing a good clinical examination and ruling out other things using clues from other body sites, you can arrive at the diagnosis. We really do want to try to save a procedure like a scalp biopsy for when we really need it, especially in kids for whom a scalp biopsy can be traumatic.
The Dermatologist: How do you address the psychological and emotional impacts on the quality of life of children with AA and their families in your patient care?
Dr Craiglow: This is such an important part of treating patients with AA, which is a disease that can have a profound impact on quality of life, starting in very young children. I think one of our most important jobs as dermatologists is to acknowledge the patient experience. A lot of patients with AA have had their experience dismissed by many people in their life, whether it is by friends or family, but also sometimes by health care providers. Patients hear things like, at least you are not sick, or it could be so much worse, or at least it is not cancer. Parents may hear, at least he is a boy. Hearing statements like these can make the experience even harder and more complicated. Showing empathy never begins with “at least.” That is not what we should be saying to people. We need to say, “How are you doing? I understand this is really hard.” People need to have their experience validated. It is difficult to interact with the world in a normal way when you are missing hair, or you do not have any hair. I always tell patients that perspective is useful, but it should not take away from your experience. Obviously, you are grateful that your child is healthy, but that does not mean it is not hard to have a child who everyone thinks has cancer.
We are so quick to want to fix everything for everybody, but when a patient is having a hard day, they just want to hear someone say, “That is awful. I am sorry about that.” I ask my patients on a scale of 0 to 10, how much does this bother you? Often, patients are almost afraid to say how much it really bothers them, so I will say, “A lot of patients of mine are a 10 and that is okay.” Then I will ask, on a scale of 0 to 10, how much do you want your hair back? With kids, they get a lot of positive reinforcement for coping, which is good on the one hand because coping is useful in life. But I think sometimes they hear it enough, especially from adults in their life like their parents, and it makes it difficult for them to say they are having a hard time. Also, patients’ relationship with AA can change. There could be a time when they are okay but then another time where it could be awful. If they are having a hard time, it does not mean they are not tough, or brave, or strong. I often say to kids, the brave thing is to say how you really feel. It is hard in a short patient visit to get at these things, but I think it is important to take at least a few minutes in the beginning to say, “I am on your team. I understand and I am not going to say, ‘At least this is not X, Y, Z.’” I think patients open up and they feel heard, and then everybody gets more out of the visit.
Join us next issue for part 2 of this interview, in which Dr Craiglow discusses treatment options and the unique considerations for managing AA in pediatric patients.
