In the year that we’ve known about Toodlebug’s alopecia diagnosis, K-Hubs and I have also learned that most of what we know has come from others with alopecia. So, although we don’t have answers for what works yet, I’ve decided to share our story to benefit others in the same situation.

A year ago, I was pregnant with Twinkleberry and far enough along to also have the glucose test.  I’m Rh negative and had to have a Rhogam shot. Since the appointment was going to take a long time, I asked a neighbor to watch Toodlebug.

The neighbor always styles her daughter’s hair to the nines and did Toodlebug’s hair that day, too. I was amazed she could get Toodle to sit that long. But that was also when I noticed a strange bald patch at the base of her hairline.

Being pregnant and otherwise neurotic, I was convinced it was some rare disease like ringworm of the brain. I was half right. I’m not sure ringworm of the brain even exists, but other rare diseases do.

We took Toodle to the family physician for a diaper rash, and I said, “Oh, by the way, can you check this random bald spot on her head?”

He referred us to a dermatologist who told me it was alopecia areata, an autoimmune disease that attacks the hair follicles on the head and sometimes the beard area causing patchy baldness. In extreme cases a person can be completely bald (alopecia totalis) or completely hairless all over the body (alopecia universalis).

After doing research, I have learned our experience was not much different than many other alopecia sufferers. The dermatologist said there is no cure and aside from topical creams and steroid injections into the bald spots, there’s not much you can do. He sent us home. End of story.

Being extremely pregnant, I remember not being able to really deal with it, so I focused primarily on applying the topical steroid twice daily as diligently as I could.

But after seeing the patches spread, and settling into a routine with Toodle and newborn Twinkleberry, I started to wonder if the topical treatment was the best response to the disease.

To make us feel better, people kept saying that hair or no hair, Toodle was going to be just fine. Since there is no physical pain involved, we should consider ourselves lucky. It’s cosmetic after all, and beauty comes from within.

Except something kept nagging at me. Why was this happening to her? Not in the sense of a pitiful “why her?” (although that happened at times, too) but a physiological, what-is-going-on-with-her-health kind of thing.

About nine months into the diagnosis, it was my mother-in-law who asked whether Toodlebug’s seasonal and milk allergies had anything to do with it. I quickly answered in the same vein as the dermatologist and said, no, although people with alopecia often have allergies, the one doesn’t cause the other. There’s nothing we can do.

But she had me thinking. So I ditched the family, ran upstairs, and searched on the iPad for diet and alopecia links. I found more information than I knew what to do with.

And the vast majority came from alopecia sufferers, not doctors.

There isn’t a cure for alopecia so treatment is short-term and tricky. However, it’s possible that for some alopecia patients, changes to diet, lifestyle, and environment can make a difference in managing it.

I found a common thread in success stories was a desire on the part of the patient to try new things and a willingness on the part of a doctor to support those changes and help the patient manage the process, making recommendations and referrals from time to time.

Our experience has been no different. I wasn’t satisfied with the dermatologist. Toodlebug is young and this is a permanent condition. My unwillingness to settle was the realization that trying new things couldn’t be any worse than a lifetime of steroid treatments. That and the realization that eventually she’ll have to take this on herself. I won’t be able to do it for her. The more we learn now, the more we can arm her later with information about how her body works.

I’m not a doctor or a dietician, and please know that we have no idea what we’re doing. We’re still in the investigative stage. Please talk to your doctor to determine what is best for you. Each case is different, and the magical mix of successful components varies from person to person.

Although I am ranting about our experiences with the specialist, I do not believe all doctors are like this. I do believe they need to be a part of the process. I also believe patients have the right to advocate for their own health, care, and treatment.

K-Hubs and I immediately took gluten out of her diet. No, we didn’t set up the test. Admittedly, we figured her hair would either come back or it wouldn’t. We may get her tested eventually for Celiac disease but, one thing at a time. We have also removed dairy and are now in the process of limiting sugar intake as much as possible.

At our yearly check-up I casually mentioned to the dermatologist’s nurse that we had started removing gluten and dairy from Toodlebug’s diet and thought we were seeing some improvement. She reported this to the dermatologist who spent the rest of the appointment reconfirming with me that I knew he hadn’t authorized that. Yes, I said, I knew that. So he asked again, to which I replied the same. And he asked again. You get the idea. He then prescribed a new, stronger ointment that has been linked to cancer and said he wasn’t convinced about the link between diet and alopecia. Fair enough.

I left the appointment feeling like I had been dabbling in dark magic, failing my daughter for not accepting her for exactly who she was, and superficial for worrying about something as minor as hair loss.

But I’ve always had three prayers for my children – I pray for their safety, their happiness, and their health. If Toodlebug’s immune system is out of whack, I want to know why. If the alopecia is a symptom of something else, I want to know what.

After two weeks of feeling downright depressed about the whole thing and freaking out about the new treatment, which I couldn’t bring myself to use, I finally told K-Hubs I couldn’t do it. I couldn’t do the new treatment. Not until I had met with the family physician, the same one who made the referral.

So off to him we went. I told him about us removing gluten and dairy and my suspicion that Toodlebug is vitamin deficient. I apologized for doing online research, fearing I’d get the same reaction as I had at the dermatology office.

Instead he said, “You have a child with alopecia areata…and she’s four. That’s a BIG deal. Of course you’re going to do your own research. That’s what parents do.”

That’s all I needed to hear.

He shared that allergies are common among alopecia sufferers as are vitamin deficiencies. Testing for vitamin deficiencies is tricky with alopecia because the “symptom” is often the hair loss and not other obvious signs. He said for us to keep an eye on her vitamin D and iron intakes. If we don’t see improvement, when she’s older we can look into doing blood draws.

He checked her scalp, something the dermatologist didn’t do until I asked (no joke) because I saw a mark on her scalp (there’s that ringworm of the brain again – no, it was just a benign spot). The family physician noticed she has hair follicles showing in the bald patches. He said, “Let’s keep going with the diet changes, Mom. I’m seeing follicles. I’m seriously seeing follicles.”

Squeeeee!

Truth be told, the follicles could have nothing to do with diet changes. The condition can ebb and flow on its own. For now, K-Hubs and I think the hair fall is slowing. We also agree we’re using less of the topical steroid (different stuff from the one that is linked to cancer). Admittedly, we may be just getting better at applying the medicine and a new patch could present itself tomorrow. But we’ll take small wins wherever we can.

The family physician also referred us on for allergy testing (our appointment is in the near future) and said to focus on healthy foods for her. If her immune system is out of whack, eating healthy is critical.

Although I don’t whether it makes any difference, we have changed out Toodlebug’s shampoo and conditioner with something all natural, and we have changed her laundry detergent as well. We are also focusing on stress management and positive self talk for her since stress can have a negative effect, from what I’ve learned, on alopecia.

Interestingly, spirited children are more likely to have allergies and those who have alopecia are also more likely to have allergies as well. Go figure.

None of this may ever make a difference. Her condition may never change. I can live with that. However, I can’t live with not trying. As long as we try, I can live with whatever outcome presents itself.

This post has gone on long enough, so in a separate post, I’ll share what specific diet changes we’ve made and the brands we have been using so far. I’ll also include links to other stories that I have found helpful.

I grew up on boxed Mac ‘n Cheese, Coke products, tv dinners or the occasional Hot Pocket, and the cheapest shampoos available. So this is all new to me. Thanks for hanging in there. This post is a long one. But hopefully, our story will help others, even if, and maybe especially since, it isn’t over yet.

 

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