Author: Winning Alopecia

When your child is diagnosed with alopecia, the first thing you’re likely to get is a prescription for meds. Before you decide, this is your child’s health, so ask questions and do your homework.

📝 Read the fine print. Docs won’t tell you about the side effects of the drugs they prescribe. Honestly, I don’t think anyone focuses on long-term implications, so you have to care for yourself!

• What’s in the drug? How does it work? Does it suppress the immune system? Block inflammation?Does it just manage symptoms or actually address the cause of the hair loss?
• What are the warning labels? Steroids, immunosuppressants, and other meds often come with warnings like potential growth issues, hormonal imbalances, or long-term immune complications. These are rarely if ever discussed during a short appointment.

📝 What worked for someone else may not work for your child, or could have risks you’re not willing to take.

• Are you OK with temporary results and long term side effects?
• What does this mean for your child’s health in 5, 10, or 20 years?

📝 Your doc doesn’t have all the options. They are trained to use pharma meds, and mainstream medicine tends to dismiss non-pharma approaches, but that doesn’t mean they aren’t valid.

📝 Using prescription meds may seem like the “easier” way out compared to changing your family’s daily choices, like what your child eats or their environment. But really, there is no easy way out with this. Healing comes from addressing the root causes, not just managing symptoms. While it’s tempting to hope for a quick fix, lasting results require deeper, more thoughtful changes.

It’s a personal decision.

The best choice is the one you feel good about after careful consideration. Whatever you choose, make sure it aligns with your child’s needs and your long-term vision for their health. Weigh your options and risks, ask tough questions, and make informed decisions instead of just rushing into whatever the docs tell you.

Preparing for your child’s doc or dermatologist appointment for Alopecia? Here are 15 questions that I would ask.

1. What is causing my child’s Alopecia?
2. What further tests can we do to identify potential triggers, not just a snapshot of what’s currently going on in their body?
3. If there are deficiencies or anomalies, what are causing them?
4. Do lifestyle factors like their diet and exposure to toxins play a role in this? If not, why do you think not?
5. If the cause is unknown, how do we know for sure what’s NOT causing it then?
6. Why is my child’s immune system behaving this way? What could it be overreacting to?
7. Why are you recommending this treatment?
8. How does this medication/topical/allergy pills work, and what’s the goal?
9. What do these drugs to my child’s body, what are the effects in the short and long term?
10. How can I know if these are safe for my child?
11. What are the warnings on these drugs? Are we supposed to use them on children?
12. What are the risks vs. potential benefits of these drugs?
13. What would happen if we stop treatment?
14. What other options are there beyond these treatments that you prescribe?
15. If these treatments don’t work, what are the next steps?
16. If my child experiences negative effects with these treatments, what do we do?

Short answer? Yes IF:

🤔 You just wait for a “solution” from the doc or specialist, which is often a long wait and turns out to offer no answer but just prescription meds to manage symptoms, and

🤔 You don’t proactively learn and educate yourself about this, and

🤔 You don’t find and remove as many potential triggers as possible to STOP the hair loss.

The time it takes to wait for your appointment with high hopes, to do blood tests and wait for the results, only to eventually be told “the labs are normal”, and “the cause is unknown”… that bald spot may get bigger and yes, more may come up. 😩😢

We’re taught to seek all answers from the “experts”, but what do we do when the “experts” don’t have any answer or solution to offer?

Many kids progress quickly to total hair loss in a matter of weeks or months. The logic is simple. If you keep doing the same things that get your kid to this point, then you can’t expect the outcomes to change.

Instead of just holding high hopes that the doc or specialist will solve this for you, teach yourself and make changes. All of my child’s hair regrowth did not come from what the docs and specialists had to offer, but from years of learning and making changes and then more changes through all the ups and downs. 💪

Your child’s doctor appointment is where you have HIGH HOPES to finally get answers. Will you, though?

You spend days and weeks searching for the ‘best doctor’ and waiting for the appointment. But before you get your hopes up… here’s what to expect at your child’s doctor/specialist appointment for Alopecia, shared from my experience having seen about 10 different doctors and specialists for my child’s Alopecia, between the age 19 months to 8 years old, across two different countries.

1. The docs will diagnose and tell you what  type of hair loss your child has, usually either alopecia areata, totalis, universalis, or something else that is likely not autoimmune-related, such as fungal infection, etc.
2. They will order labs (blood test) which will most likely come back “normal”. If they find deficiencies, they will ‘treat’ your child for those, but won’t find out the cause.
3. They won’t know what causes the hair loss, except to just say it’s autoimmune. Some will venture “guesses”… stress, recent infection, allergy, or that your kid may have been pulling out their own hair.
4. They won’t know when you ask them the prognosis… will the hair grow back? how bad will this get? Each doc has their own version of how they think this will go. Reality: no one knows, not even the ‘professionals’… no clue.
5. They don’t know what causes it but they will tell you it’s nothing to do with your child’s diet or the environment, perhaps maybe just to the extent of things like “do you eat enough food containing iron/protein/etc. Very surface level ‘basic’ stuff.
6. They will prescribe: minoxidil/steroids/immunosuppressants/antihistamine (allergy meds), antibiotics, or even stronger drugs like JAK inhibitors etc. Steroids and immunosuppressants will be given in either pill or topical cream/lotion. They rarely discuss side effects and they don’t know how effective these treatments will be. No matter which doc you see, these are all they have in their toolbox, nothing more.
7. You spent time preparing a list of thought out questions but it will likely be a super short appointment because they won’t be able to nor have time to answer your Q’s.

Docs are your first stop. But oftentimes, I see parents getting their hopes up and having too high of an expectation of what the appointment will bring them.

Remember, docs have a role and they are trained in one aspect only. What they offer you does not represent ALL your options.

All the hair growth we got did not come from MSM: no pill, no shot, no topicals. And this was right for us.

You found one or more bald or thinning spots on your child’s hair/head and suspect that he/she may be dealing with Alopecia?

I can’t tell you what to do, but here are 8 things I would do, speaking from my own experience.

Step 1. Get a diagnosis.
📝 See a doctor or dermatologist to get a diagnosis and confirm the type of Alopecia that you’re dealing with. They will most likely order lab work and prescribe Minoxidil/steroid/immunosuppressant/antihistamine as treatment options, and not much more. In some cases, a written formal diagnosis will come in handy later on.

Step 2. Do your homework and evaluate your options before deciding on a treatment.
📝 Really do your own homework on the treatment options handed to you. You most likely won’t get info on side effects from the 🩺🧑‍⚕️ so do your own research and then weigh your risks vs. benefits. No one will care about this more than you do.

Step 3. Learn all you can about what you can do proactively.
📝 Don’t stop with a diagnosis and medicated treatment (if you decide to take it). There are tons to learn and lots you can do to turn this around for your child well beyond what docs are trained for.

Step 4. Evaluate all that your child is exposed to on a daily basis: what goes into and around them.
📝 Clean up their ‘environment’ — that includes what they eat and use — and remove as many potential triggers as possible. Even if you decide to use meds, this step is still important as meds will not possibly take care of this and your docs will tell you that this is not what causes it.

5. Distance yourself from content that is counterintuitive.
📝 If healing your child from Alopecia is what you truly want, I wouldn’t consume “support groups” content that promote and over glorify being bald and not needing hair. Acceptance is important, but be careful of crossing over into simply submitting, unless that’s what you want. Tune in to content that gives you hope and encouragement of what’s possible instead.

Step 6. Talk to your child in a way that empowers them.
📝 Explain to them what’s happening in a language that they can understand, based on age and comprehension level. Let them know that you will be learning about this together and figure out what you can do about it. Reassure them that they can still do amazing things with their life.

Step 7. Inform your child’s school, teachers, etc.
📝 Write or speak to your child’s school, teachers, and wherever else they have regular activities at which you think are relevant to know. It helps if they are aware so that they can be accommodating (such as if your child wants to wear head coverings or need to keep a special diet), to be more sensitive when planning things like “crazy hair days”, and to be more equipped if other students have questions.

Step 8. Do what you can to protect your child’s feelings, self esteem and self confidence.
📝 Whatever you choose to do, whether it’s meds or changing diet and lifestyle choices, it will take time to see ‘results’. In the meantime, do what you can to make them feel as emotionally comfortable as possible. That means yes if they want to use hats, scarves, headbands, different hairstyles, hair toppers, or even wigs as you work on getting the hair to grow back. It’s all OK. 🩵

A heart-wrenching question: Will it grow back? Is this a temporary ‘phase’, or will it be permanent? 😢

All of these were said by different docs we saw: 👇
– She will be completely bald if you don’t start using this strong immunosuppressant ASAP! 😱
– Nah, these things happen to kids. The hair will just grow back on its own.” 🤢
– 😶😶😶 (seriously, she said nothing and just walked out of the consult room and ‘disappeared’).
– Use this steroid cream. The immunosuppressant isn’t strong enough.
– No, we shouldn’t use steroids on kids for Alopecia. I’m going to prescribe Minoxidil and Clobetasol.
– I’ve read about using allergy meds for this. Do you want to try that?
– Yeah, there’s nothing we can do.

Conclusion? They are all just as clueless. 🤯

Hair can grow back—but it depends on the steps you take.

🌱 Regrowth isn’t just about waiting for time to heal. The foods your child eats, their hydration, their exposure to sunlight, and even how much restorative sleep they get play a HUGE role in supporting their hair follicles to thrive again.

🌀You may be disappointed down the road if:
– You rely solely on mainstream advice and those “experts” 🩺🧑‍⚕️ that say, “It’s just autoimmune, and there’s nothing you can do.” or, “It’s genetic—just accept it.” or “Steroids and pills are your only option, everything else doesn’t have enough scientific research to back it up.” 🤢
– You spend too much time in “support groups” that over glorify and celebrate the condition without doing anything meaningful in helping turn around hair loss to hair growth. We don’t just need passive acceptance and embracing the condition, but also hope and realistic action plan to CHANGE THIS! 💥

Learn about this, empower yourself with knowledge and take steps to change the situation. Follow my account for all things kids Alopecia.

#alopeciaawareness#alopeciauniversalis#alopeciatreatment#viral

Alopecia is a broad term that refers to hair loss in general. When hair loss happens to kids, it’s usually the autoimmune kind, meaning that it is immune-related.

1. Alopecia Areata
The most common type, this usually starts with bald patches on the scalp.

Variations of Alopecia Areata:

– Ophiasis: Hair loss happens along the sides and back of the scalp.
– Sisaipho: The reverse of ophiasis—hair loss affects the top of the scalp while the edges remain intact.
– Diffuse Alopecia Areata: Instead of patches, hair thins evenly across the scalp, often mistaken for other types of hair loss.

2. Alopecia Totalis
When hair loss progresses to the entire scalp.

3. Alopecia Universalis
Complete hair loss across the scalp and body, including eyebrows and eyelashes.

If you see a doctor, they won’t know what causes it, and sometimes they would *guess*… “it’s probably stress” or “your child may be pulling their hair out”. 🤦🏻‍♀️

Stress affects our immune response, so yes, stress would have an effect, but is not the sole cause for autoimmune types of Alopecia.

Some people do develop patches of hair loss from physical pulling of the hair (including those from super tight hairstyles), but that’s a totally different kind of Alopecia which is much more straightforward and NOT what we’re dealing with here.

Regardless of which of the 3 types of autoimmune Alopecia you’re dealing with, I want to comfort you by saying that THERE ARE THINGS THAT YOU CAN DO. We don’t hear this enough, certainly not from the 🧑‍⚕️🩺.

* This post is for informational purposes and is not a medical diagnosis. Please consult your own doctor for your specific circumstance.

#alopecia#alopeciakids#alopeciaawareness#viral

You are a parent who’s just found a bald spot, a thinning spot… 👇

You start wondering: What is happening here? Was this here before? Is it normal for kids to lose hair? Could it be stress? Allergy? Was it from a recent illness? Is it going to get worse or just resolve on its own?? 😩

Then you start to pay closer attention—checking pillows, hairbrushes, the shower drain. You’re left wondering, is this a phase? Will it go away on its own? Or is there something more serious? 🥹

Googling brings up more questions than answers. Words like “alopecia” start appearing, and you find yourself going down rabbit holes, feeling more overwhelmed than informed. It affects 2% of the population, you may have read. “In most cases, hair will grow back on its own.” While others say “It’s a random thing and very unpredictable.”

You book an appointment with your doctor. Surely they will have a solution, right? 👀

The first weeks of noticing hair loss are confusing and emotional.

No, in most cases, the hair won’t just grow back on its own. 😢 But, there are things you can do for hair growth to happen. 💡

No, the doctors don’t have a solution, just try-and-see treatments, and no, they don’t have a clue what’s causing it.

Yes, most likely it is Alopecia (the autoimmune kind) if it happens to kids. ❌No, it’s not just stress. ❌No, shampoos or hair growth products alone won’t make it better. 😩

Something IS causing it but it’s a complicated answer.

This is the beginning of a journey. Hang tight. There are lots to learn. Take a breather… 😮‍💨 it’s gonna be okay.

Follow my account for all things kids Alopecia.

#alopecia#alopeciaareata#hairloss#viral