Today, April 14, 2022, is Children With Alopecia Awareness Day. In honor of this day – and also because of the “Slap Heard ‘Round the World,” at the Academy Awards – I felt like it was an appropriate time to share our alopecia story.
What is Alopecia?
Alopecia is a non-contagious autoimmune disease. The immune system- for whatever reason – attacks the hair follicles resulting in hair loss. There isn’t a whole lot medical providers know or understand about alopecia but information circulating through a few support groups suggests that both parents have to be carriers of the alopecia gene. As far as we know, no one on either side of our family has ever been diagnosed with this autoimmune disease.
Types of Alopecia
There are three types of alopecia.
- Alopecia Areata – Hair loss that starts as a small circular patch
- Alopecia Totalis – Total hair loss on the head
- Alopecia Universalis – Total hair loss on the head and body
On December 23rd, 2021, we noticed a small bald spot on our baby girl’s head.
By some stroke of luck (because it was two days before Christmas), I was able to get her scheduled for a doctor’s appointment the same day. Our pediatrician was concerned because her weight had dropped. She has always been super tiny, so even though she only went down a couple of ounces, the doctor felt it was time to get her in to see a gastroenterologist (GI).
Our appointment with the GI doctor was scheduled for the first week of January. But over the next two weeks, we did something really stupid. We started researching her symptoms on the internet.
And that’s when Hysterical Parent Syndrome set in. According to the internet, she could’ve had any number of illnesses from Celiac Disease to cancer.
READ MORE: Is Unexplained Weight Loss a Sign of Cancer
If you’re not familiar with Hysterical Parent Syndrome (HPS), don’t worry. I made it up.
Hysterical Parent Syndrome is when a parent becomes so terrified at the prospect that something is horribly/terminally wrong with their child, that they fail to draw rational conclusions or connect the dots.
Our time on the internet wasn’t always terrifying. We also learned about less frightening possibilities such as telogen effluvium.
Telogen effluvium – in a nutshell – is hair loss caused by stress or a shock to the system. Surgeries, car accidents, and other stressful situations can cause hair loss. I also read somewhere on the internet that hair loss will usually begin about 4-6 weeks after the stressful event. I can’t find that article anywhere but I definitely remember reading it.
The Stress Factor
Because life without hair isn’t challenging enough, our baby girl also has infantile idiopathic scoliosis.
READ MORE: Our New Normal: Life with Scoliosis
Infantile Idiopathic Scoliosis is where there is no explanation for why there is a curve in the spine. She was first diagnosed with scoliosis when she was two months old. The doctors hoped it would clear up on its own because infantile scoliosis often does. Unfortunately, that wasn’t the case. She spent six months in a MEHTA Cast.
A MEHTA cast wraps around the torso, pushing on the spine from one direction. After that, she’d been in a brace for about two years with no problems. Until October 2021.
READ MORE: Scoliosis Update: Life with a TLSO Brace
Her last brace wasn’t getting the job done and the curve in her spine was growing. So the fabulous team at CHOA Orthotics made a new brace for her. We’d never had any problems with her wearing a brace. After receiving a new brace, she’d fuss for a day or two, and then she’d be fine. Until October 2021. This was the brace that made her cry constantly. I even took her back to CHOA (a three-hour drive from our house), for an adjustment because she was complaining so much. Constant crying and complaining. She begged me to put her back in her old brace. Unfortunately, that wasn’t an option.
If you follow the internet opinion that hair loss from telogen effluvium starts 4-6 weeks from a stressful event, that would put us in December when we first noticed the bald spot on the top of her head.
Sounds logical, right? Or at least a possibility? We thought so. And because this level of hair loss is much less terrifying than cancer, Graves’ disease, or Celiac disease, this was the diagnosis we clung to.
The GI Visit
We drove to the hospital in Atlanta the first week of January. Our GI doctor was great. She knew we drove a distance to get there so she ordered a bunch of tests she’d normally wait on so that we wouldn’t have to make another trip. She also looked at our daughter’s head. She was careful to say that only a dermatologist can make the diagnosis however, she felt the hair loss was likely telogen effluvium because of the new brace.
And while she was careful to remind us that she couldn’t say anything official until she received the test results, there wasn’t anything about our four-year-old that struck her as alarming or had her concerned.
During our visit, I mentioned my adventures with researching on the internet so before we left, she made me promise I’d stay off the internet. She promised she’d reach out to us as soon as she had all of the results and that if we had any questions we could message her through the hospital’s messaging system.
We met with the dermatologist near the end of January/early February. By this time she had very little hair on the top of her head. I wish I could say that the visit to the dermatologist was informative but if anything, I left feeling dismissed.
The gist of our visit went something like this:
The dermatologist: Well it’s not telogen effluvium. It’s Alopecia Areata. It’s an autoimmune disease. There’s no treatment for it. You should join a support group. Here’s a topical steroid you can try for a couple of weeks, but it probably won’t work. You can schedule a follow-up appointment, but there’s really no point. I can’t do anything for you or her.
Oh! And you should prepare yourself. She’ll probably lose all of her hair along with her eyebrows and eyelashes.
And that was it. No pamphlets. No direction on where to go for support. Nothing.
Fortunately, my resume states that I’m a resourceful problem solver. All it took was one Facebook search and I found a ton of support groups. The downside of all of this was that the one doctor who was supposed to help clearly didn’t want to bother. That meant I was left to fend for myself. Back to the internet, I went. But that’s a story for a later post.
But one last thing to mention, the test results from the GI doctor came back. Baby girl tested negative for everything! Aside from her hair loss and her scoliosis, she is totally healthy.