Alopecia Areata in Children

Explore expert insights on pediatric alopecia areata, including differences in presentation and treatment vs. adults, diagnostic strategies, quality of life considerations, and tailored management approaches to support young patients and their families.

Brittany Craiglow, MD, is a double board-certified dermatologist and pediatric dermatologist and an associate professor adjunct–dermatology at Yale School of Medicine in Fairfield, CT.

Transcript

The Dermatologist: What are the key differences in the presentation and management of alopecia areata in children compared to adults, and how does this influence your approach to diagnosis and treatment?

Dr Craiglow: I would say in general, children and adults present similarly. I mean, alopecia is usually a clinical diagnosis, so it's usually something that from the door you can tell what the patient has. One thing I will say is that I think that we see diffuse alopecia areata not infrequently in kids and every so often that's actually something that gets misdiagnosed initially. Something I always say is kind of a clue sometimes to alopecia is a child who's touching their scalp a lot. And I have some children who've been referred for hair pulling or concerned for hair pulling who actually have alopecia. So they have this sort of just thinning more so of hair. It's often sort of on the crown and oftentimes parents will say, oh, they're touching their hair, they're twirling it. They don't know if they're pulling. And I think that may be because many people when they're losing hair actually have a sensation. People describe it as a burning or a tingling feeling. And I think for young children especially, they're not able to articulate that, but they feel it. And so there's a sort of draw for their hand to touch their scalp. So I think sometimes that can be a little tricky in young children, but otherwise a circle of smooth alopecia is something we see commonly in kids and adults. And then of course any age group can go on to have really multiple patches or really severe loss. So it's not usually a diagnostic challenge, but for sure treatment can be very challenging, especially in kids. And I think we fortunately have approved treatment options for adults, which is really exciting and that has sort of revolutionized the treatment in adults. There is one FDA approved treatment option for severe alopecia in adolescent, so patients 12 and up. And that has also been a huge game changer for our patients with more severe disease. But when you start looking at the undercrowd crew, there are no FDA approved treatments. And there's a lot of things that we think about in terms of where do we go with treatment? How old is a patient, how severe it is, how many other things have they tried? How much is it impacting their life? I use a lot of off-label therapies in kids. Well, everything is off-label, but I use a lot of off-label systemic therapies in children because it is a really hard disease no matter how old you are. And I think everybody really does warrant treatment.

The Dermatologist: Could you discuss the impact on the quality of life of children with alopecia areata and their families, and how do you address the psychological and emotional impact in your patient care?

Dr Craiglow: I think this is a really, really important part of treating patients with alopecia areata. This is a disease that can have a really profound impact on quality of life. And that impact can start in very young children actually. And I think one of our most important jobs as dermatologists is to acknowledge the patient experience. So a lot of people with alopecia have been dismissed by many people in their life or sort of had their experience dismissed, whether it's from friends or family, but also sometimes from healthcare providers. People hear things like, at least you're not sick, or it could be so much worse, or at least it's not cancer, at least he's a boy. All of these things that when you're having a hard time with something really are very difficult to hear and make the experience even harder and more complicated. And I think what I heard something recently that showing empathy never begins with at least, so at least you don't have X, Y, Z. And that's not what we should be saying to people. We need to say, Hey, how are you doing? This is really hard. People need to have their experience validated. And I think we see a lot of hard things in dermatology, but when you're having, again, when something is hard but nobody understands it or gets it and people are telling you sort of what's wrong with you? Why can't you take this in stride, then it's just even harder. So I think this is hard for everybody. It's kind of impossible to interact with the world in a normal way when you're missing hair or you don't have any hair. And I think just because somebody isn't sick per se, doesn't mean they're not having a big impact on their life. And I always tell people perspective is useful, but it shouldn't take away from your experience. Obviously you're grateful that your child is healthy, but that doesn't mean it's not really hard to have a child who everyone thinks has cancer.

So I think there are lots of ways to get at this in the clinic, but I think I often just sort of say, this is hard. How are you holding up using those words over and over just to really, again, validate the experience I think is so important. We're so quick to, we want to fix everything for everybody. We want to be like, it's okay, or at least this or at least that. But you're having a hard day. You just want to hear someone say, oh, that's awful. I'm sorry about that. And so I think doing that, but then also ask my patients on a scale from, sounds sort of corny, but I think it's useful. On a scale from zero to 10, how much does this bother? And oftentimes patients are almost kind, I think afraid to say how much it really bothers them. So I'll often say a lot of patients of mine are a 10 and that's okay. Kind of give permission sort of show like, hey, we understand. And then another sort of on the same line, okay, zero to 10, how much do you want your hair back? So I think that is actually the question that really kind of captures it the most because a lot of people will be coping, they're coping, they're getting through their day, it's awful, but they're sort of not letting it stop them, but that doesn't mean they don't warrant treatment.

And I think another thing with kids is everybody really gets a lot of positive reinforcement for coping, which is good on the one hand because coping is useful in life. But I think sometimes you hear it enough, especially from adults in your life, like your parents, oh, he's so tough. Oh, she doesn't even care, he doesn't even want hair. And you're getting sort of built up for that. So it sort of makes it really difficult to say, actually I'm having a really hard time actually I don't like this. And your relationship with it could change. There could be a time where you're like, oh, I'm okay. But then another time where it could be really awful. All this is just to say acknowledging the experience however you feel is okay and something's not wrong with you because you're having a hard time. It doesn't mean you're not tough or you're not brave or you're not strong. I often say to the kids, the brave thing is to say how you really feel. And so I think it's hard in a short patient visit to kind of get at these things, but I think it's at least a few minutes in the beginning to sort of say, Hey, I'm on your team. I understand I'm not going to say at least this is not X, Y, Z. I think patients open up a lot and they feel heard and then everybody kind of gets more out of the visit.

The Dermatologist: What diagnostic considerations are important when evaluating a child with suspected alopecia areata, and how do you differentiate it from other types of hair loss commonly seen in pediatric patients?

Dr Craiglow: So alopecia areata is one of the most common hair loss disorders we see in kids. A child presenting with hair loss. I think a lot of the kids we see with alopecia are often initially thought to have something else most commonly tinea capitis, which is something that often does present with hair loss, but generally looks a little bit different. Usually kids with tinea capitis, there's a little scale associated with it. They often have lymphadenopathy, particularly the occipital scalp, so that can be a clue. Sometimes they'll have tinea corporis elsewhere, and alopecia is not always but often very smooth round patches of hair loss, usually not scaly, but every so often they may have concomitant seborrheic dermatitis and there may be a little scale there too. I think again, oftentimes the diagnosis is straightforward, but sometimes it's not. And I think using your dermatoscope looking for sort of clues on tricoscopy can be really helpful.

So oftentimes kids, a lot of times the kids I see who have diffuse alopecia, I'll just get my dermatoscope and I'll look and they have little exclamation mark hairs or they have little open follicles. And I think it's one thing to read about these things, but it's another thing to kind of do it in practice. So I always tell the residents when the diagnosis, use your dermatoscope and see, and then you're like, oh, that's what an exclamation mark hair looks like. Oh, that's what this looks like. So then when you're not sure, you can kind of have that background going into it and maybe make the diagnosis that way. It's pretty unusual that you'll need to do a scalp biopsy because there just really aren't a lot of other things that present similarly, but diffuse alopecia. Sometimes patients might end up with a biopsy. I think oftentimes another diagnosis, especially at the beginning that kids will get sometimes is telogen effluvium, which is pretty uncommon in children really.

But sometimes the onset of alopecia areata, especially if it's more diffuse and severe, can sort of look like telogen effluvium or if someone just coming in with a lot of hair shedding. So this is where you have to really look throughout the scalp, do they have any patches? And then looking elsewhere on the body too, making sure you look at all the hair bearing sites. So eyebrows, eyelashes, body hair, looking at fingernails. A lot of patients with AA also have nail changes most commonly is pitting. It can be very subtle. Sometimes family history or personal history can be a little bit of a clue. So is there a family history of autoimmunity? Does the patient also have atopic dermatitis for example? About 30% of kids will have both. So sometimes kind of pulling in clues from other areas. We really do want to try to save procedures, so when we really, really need it, especially in kids, a scalp biopsy isn't the most fun thing to do in a child and can be kind of traumatic. So I think usually with good clinical exam, ruling out other things using clues from other body sites, usually you can arrive at the diagnosis. The Dermatologist: What treatment options are available for children with alopecia areata, and how do you tailor these treatments based on factors such as age, disease severity, and patient preference?

Dr Craiglow: Yeah, so are, as I mentioned, there's one FDA approved treatment for patients 12 and up. So that's ritlecitinib, that's a kinase inhibitor, that's FD approved now for severe alopecia, which is a great option to have something on label for our teenage patients for whom this is kind of a hard disease for everybody, but middle school, high school is, I think it's tough even when you have your hair. And so add alopecia to the mix and it can be really, really difficult. So for those patients, we have that as an option. There are lots of other things that we use. This is kind of the art of medicine. There's really not sort of one size fits all. There are so many things that we think about starting with how old is the patient, how much hair loss do they have, how much it's affecting them, have they tried anything? How motivated are they, how averse to risk or not? So there are all these different things that we kind of take into consideration. And fortunately, most patients have fairly mild disease. So somebody who comes in with a patch or two or three, then often we can just use local therapy In older kids and adults, we often use intralesional triamcinolone, which is I would say still kind of the mainstay of therapy for limited disease. But one of my rules with treating children is that you never want the treatment to be worse than the disease. So I don't think injections are appropriate for younger children. I usually don't even bring it up until a child is maybe 10 or 12. And even then I say, look, you don't have to do this. Some kids are really motivated and they're able to tolerate it, but if it causes distress, then I think it's not worth it.

Sometimes we'll use topical corticosteroids. Those sort of, I would say have fairly limited efficacy, but sometimes can be useful. My approach is usually kind of throw the book at it, do D, all of the above because everything with hair takes a really long time. So any intervention we make, we have to wait 2, 3, 4 plus months before we have an idea of it's going to work or not. So it's better to do multiple things at the start and then pull back eventually rather than, okay, we'll try this thing. Alright, four months you've gotten nowhere. Okay, let's add this to it. You go more full force from the beginning and then see where the patient gets for more moderate hair loss or patients with more kind of chronic patchy disease. I use a lot of low dose oral minoxidil, so that's kind of something that's emerged in dermatology.

Most people are really probably primarily using it for pattern hair loss, so androgenetic alopecia. But it's interesting, there really is a role in alopecia. There's actually a paper many years ago in the eighties demonstrating efficacy of oral minoxidil monotherapy for AA. And so for some patients I think it's a really useful adjunct to treatment, but also even by itself sometimes can be helpful. So for patients who have chronic waxing and waning disease, which is really hard, I think sometimes it's even harder than patients who have more severe disease sort of always worried it's going to get worse. You have this thing hanging over your head constantly. And so I think in some of those cases, Minal can kind of prevent that waxing and waning. We've shown for sure that it can be useful in combination with JAK inhibitors. Definitely there's a synergy between the two.

So JAK inhibitors, this is class of drugs that's really transformed so many things. In dermatology we were able to treat inflammatory diseases that we really didn't have great options for. And these are the drugs that are approved for alopecia in adults. And then again, the one approved 12 and up, I do use them off-label in younger children. I think these are for sure the most reliably effective treatment that we have. They're targeted, they're pathogenesis based, they actually tend to be very well tolerated. And there are multiple JAK inhibitors that have approvals for other indications in children as young as age two. So there is some systematic data in pediatric populations and we know about weight-based dosing and things like this. So in the United States, there are two approved for juvenile arthritis. And one thing I often find myself saying in the clinic is if this were arthritis, we wouldn't hesitate.

We would just treat. And in medicine we treat diseases and just because somebody is coping again doesn't mean they don't want therapy. And so there are for sure unknowns, but I think in a lot of ways alopecia can be kind of as debilitating as arthritis just sort of in a different way. And I think obviously it depends on the patient and the family and the circumstances, but I think we are often looking for something to just restore normalcy to their life. This is something that can have such a profound impact on a child and then their trajectory that I think oftentimes we just need to do the thing that's going to make it better. And one thing I often say a lot is we talk in medicine about weighing kind of risks and benefits of treatment, which is we're weighing the risk and the benefit, which is what we are doing.

But really I think in alopecia areata and lots of things in dermatology, we're really sort of weighing the risk of the treatment versus the risk or the consequence of not treating. So what does it mean to finish out elementary school and then go to middle school without hair or maybe not even going to school because people are making fun of you and you're embarrassed, so all of a sudden you're being homeschooled. We have kids who are excellent athletes and then they stop playing because they're not able to wear a hat on the field or kids are making fun of them. The risk of not treating is really high for, I would say most patients. And that's a big part of the discussion. And what's great is that there are clinical trials in younger patients coming. And so I do think that in time we will have approved options for younger children.

These trials take a long time because hair takes a long time to grow. So in the meantime, sometimes we do need to sort of work outside the box. And then the other, I think important thing for people to know is that data really shows that after a period of time, probably three to four years of no hair, a person's chance of responding to even a targeted treatment like a JAK inhibitor really starts to decrease. So you're reading the textbooks, alopecia areata is a reversible disease, well, it's actually not true after a period of time. So people with severe hair loss for many, many years, their chance of responding really starts to decrease. And so sadly there are children out there for whom they're going to lose their opportunity at ever having hair if somebody doesn't treat them soon. And so that's kind of another part of our discussion with families.

So other options beyond these things is there's some kind of provocative data about using dupilumab, which is a medicine we've become very familiar with in dermatology. I would say if you take all comers, it really doesn't work very well for alopecia. But in children who have an atopic background who have an elevated immunoglobulin, sometimes it can actually be quite useful. And so that's something that is approved down to age six months. And so if they have atopic dermatitis or asthma or allergies or something to kind of warrant it anyway, that's a nice option because of the approval, but also has a great safety profile. So I have many patients who have done very well on dupilumab plus oral minoxidil, for example. So sometimes we just have to be creative and put things together. But again, it's not a one size fits all. But I think one thing for sure is that when your patient grows hair, it's really rewarding and meaningful and fun.

I think a lot of dermatologists have this idea like, oh, treating hair loss is hard and it takes a long time and people cry. And while that is true, in some ways it really is changing because we have more options. So it's really different from even just a few years ago when it was like, there's nothing now. It's like, oh, well there are these things. And then I think it just really is so rewarding to see these kids come back and their life is really different because of a decision that you made with them or with their family. And having that longitudinal relationship over time for me has been really fun and I think kind of keeps me going. And I think if more people had a taste of that, they would get it and they would want to do more because it really is impactful and getting to know these kids and their families over time. Like I said, it's really fun.

The Dermatologist: In your experience, what are some of the challenges or unique considerations when managing alopecia areata in pediatric patients, and how do you navigate these challenges in your practice?

Dr Craiglow: I think for me, probably the biggest challenge is access to medications. So especially trying to get medications approved off-label, for example, JAK inhibitors which have a high price tag, it can be really difficult endeavor. My office staff spends a lot of time on the phone with insurance companies and I write a lot of letters and oftentimes with enough persistence on the part of the physician, the office, sometimes even the family, we are able to get these medications approved, which is really wonderful. And as much as we kind of grumble about insurance, we are lucky in the United States in that we can sometimes get off-label medications. I have a lot of colleagues outside the US for whom if something is off-label, it's impossible. And here it takes a lot of effort and oftentimes you're still met with no as the answer, but sometimes we can get medicine.

So for me, I think that the trickiest thing is sorting out what angle do we take, which of the medicines makes the most sense, and how can we convince this payer that this is something that really warrants therapy and that's getting better. If you're an adult and you have severe alopecia, there are now three choices. And so that becomes a lot easier. And I think with time that will become easier also. But that's a big deal right now. So clinical trials, again, are going to be a great option for younger patients. And then I think also with kids, your patient is a child, but you also have a family, you also have their parent or parents. I think for parents, it's a lot easier for us as adults to make a decision for about our own health compared to our child's health. I think every parent wants their kid to get better or life to be back to normal, but there's always this concern of causing harm in the long run. And with JAK inhibitors, there are some unknowns about super long-term risk. We have lots of data to inform our conversations about risk, but that can be kind of tricky and there really isn't a right answer. It's more just sort of what feels right to the family. That being said, I think that because this disease is so life altering, most families are willing to tolerate a little bit of risk for the chance at normalcy, but that's another part of the puzzle that we have to think about when we're treating children.

The Dermatologist: Are there any tips or insights you would like to share with your dermatology colleagues regarding alopecia areata in children?

Dr Craiglow: So I think one thing that I kind of want to move forward is that this is becoming a treatable disease. A lot of patients continue to be told that there's nothing to do for you, and that's just simply not true. There are options. It's tricky with very young children, but one thing I think that's helpful is to say, okay, maybe this isn't something we're going to do today, but there are going to be options in the future. And so to not just shut things down right from the get go, but say, Hey, there's hope. It sounds sort of corny, but there really is hope for people with this disease in a way that there wasn't before. I think, and again, if you are not comfortable using these medications, that's okay, but maybe help find your patient, somebody who is, because there are some of us out there who are using these medicines and younger kids and are comfortable with it.

And I think especially now having an approval in teenagers, I think if people can treat adults, they can feel empowered to treat teenagers, especially again when there's an on-label option. So I think try to treat the child as if he or she were your own and try to envision what it would be like to have a child who has no eyebrows or eyelashes or scalp hair and what that means trying to navigate the world. And then also, I think the biggest thing really is to just acknowledge the difficulty of the experience. And it's really easy from the outside to say, oh, it's just hair. I always tell my patients, I don't get it in the same way that you get it. I'm getting a lot closer having met so many people over time, but for sure before I did a lot of this, I really did not understand. And so I think just checking in with your patients, acknowledging that it's hard saying, how are you doing? Connecting them with National Alopecia Areata Foundation, the support organization so people know they're not alone or have a place to go for more information. I think all those things can be really useful.