Alopecia Awareness Month

September is Alopecia Awareness Month. In celebration, I wanted to post an update on Charlotte's AA journey.

When I first started this blog my intentions were:

• Keep a journal for my own reference
• Be a support and encouragement to any other families dealing with AA
• Educate those around Charlotte about AA
• Glorify God when He heals Charlotte

It's been almost three years since we first received Charlotte's AA diagnosis and while God hasn't "healed" her in the way I wanted Him to, He has most definitely done some amazing healing on my heart. 

For those of you just joining us, here is a quick run-down of our path so far:

Charlotte was diagnosed with AA at 2 years old. At the time, she had a few half dollar size spots on her head. We sought treatment locally initially, but were very dissatisfied with the recommendations. I decided to seek out a second opinion from Stanford Children's Dermatology Clinic. Following their direction, we spent a year chasing Charlotte's spots with topical steroids and hair growth medication. The incredibly strong medications took a toll on her tiny body, and it became abundantly clear treatment was not the right path for us. We decided to stop all treatment and within 2 months, Charlotte had lost 90% of her hair. I shaved the last little bit off, and we haven't looked back since! That was July of 2014. 

So how has the last year been?

Wonderful! It was such a relief to stop obsessing about her hair loss and growth; to stop forcing her to hold still while we slathered medicine all over her head; to stop chasing something that her body was clearly not ready to accept. 

How has Charlotte been?

Wonderful! We are so thankful she got Alopecia so young. She doesn't even remember having hair. Ryder doesn't remember her having hair. None of her friends remember her having hair. To everyone around, Charlotte has always been bald. During the entire first year without hair, she never once expressed sadness, longing, disappointment, or any other negative sentiment in regard to her hair loss. 

She is the happiest, most confident, sweetest little girl I have ever met and I thank God daily for protecting her little heart. Kids this age are so innocent and accepting. They don't see differences. 

My favorite story from this past year came from the mother of one of Charlotte's preschool classmates:

She told me one day that her son had developed a little crush on Charlotte. He was trying to tell her about his "new friend from school," but couldn't remember her name. He told his mom: she was wearing a pink dress, I sat next to her at circle time, I played play-doh with her outside, etc. etc.. After about 10 minutes of trying to guess which girl her son was talking about, the mother finally figured out he was talking about Charlotte. In all his descriptions, he never once mentioned, "the girl with no hair." Kids are so awesome. 

Now I'm not too naive to think the kids will always be so kind and accepting. But I hope to take this time to build her self esteem and confidence so that when kids do start noticing, she will be strong and unfazed by any negativity. 

This summer we had the opportunity to attend The National Alopecia Areata Foundation Annual Conference. It was such a wonderful experience. Charlotte got to meet other kids with AA, and we got to meet other parents going through the exact same thing we are. We heard from the leading researchers in the field, as well as teens and adults living with AA that are thriving. It was an incredibly positive and encouraging experience.

Trying to keep this relatively concise, I'll wrap up with a request:

Charlotte currently has some hair growing on the back of her head. While this may seem like an exciting thing (in a way it is), it's also a very nerve-wracking thing for us. She still has lots of bald spots within the growth, and the majority of the top of her head isn't showing any signs of growth at all. So here is my request: Please don't comment on the new growth to Charlotte. Though seemingly well-meaning, comments like, "Wow Charlotte, how exciting! Look at all that hair growing!" inadvertently send the message to Charlotte that bald is bad and hair is exciting. We know God made her perfectly in His image, and if that means no hair, then that is perfect and we want her to know that. So while I will continue to pray daily that He will choose to grow her hair, I also pray daily that He helps me remember His sovereignty and goodness. Though I might not be able to see it, I know there is an incredible plan for Charlotte's life, and that includes AA. 

So, as always, thank you for being such an incredibly loving and supportive community to our sweet girl. I can't imagine raising her anywhere else. We are so blessed by friends and family that love her unconditionally, build her up and encourage her, support her and challenge her. We are richly blessed. 

UCSF

Things in Alopecia world went downhill quickly around here. In a span of about 2 months, Charlotte went from having enough hair to braid, to essentially bald. I was incredibly resistant, but eventually I accepted the status of her hair and shaved the few stringy strands she had left. I'll admit, it looks a lot better than it did.
This last week, we had an incredible opportunity to meet with one of the leading physicians on AA in the country at UCSF. We waited over 2 months for the appointment, and needless to say, I was a little excited. The doctor was very nice and answered all of our questions, but unfortunately had no new or miraculous ideas for us. She encouraged us to stop treating Charlotte (which we did 2 months ago) and told us that there is nothing we can do. Bummer. The only way someone with AA's hair will grow back and stay is if their own body decides to grow it back. So, while the medications will force hair growth, as soon as we stop the medication, the hair will always fall out.
In a sense, I feel like this appointment was the final chapter in this part of her story. I feel sufficient closure. We have officially exhausted every option of treatment and I feel comfortable and confident that it is time to move forward with our lives, accepting that for the foreseeable future Charlotte will not have hair.

I have had a lot of people ask me, "What can I do?" Here are some ideas, based on my experience so far:

* Talk to me. I know it's not socially normal to ask someone, "what's wrong with you kid?" But it is so painful to hear of everyone talking about her when I'm not around. I understand the desire to be considerate, but I'm telling you, it is a lot less painful when someone comes directly to me and asks what's going on. I have had so many people come to me and say, "so and so was asking what was wrong with Charlotte, what should I tell them?" If anyone asks you, send them to me! We are happy to answer any questions and we love to be open and upfront about it. We never want Charlotte to feel like we are embarrassed by her, or need to whisper around her.

*Donate your hair in her honor! She has received a beautiful wig from and organization called "Children with Hairloss." She plays with it at home right now, we aren't ready to let her wear it out yet, but the organization is incredible, was so loving and supportive. They sent her wig, hats, hair products, etc. You can put her name on your donation card.

* Give her a hat, headband, scarf, etc.

*Just treat her like a normal kid! She doesn't notice she is the only kid without hair, so neither should we! She is a happy, healthy, energetic little girl; let's treat her like one!

Celebrating her new haircut with some ice cream!

Alopecia sucks.

Imagine every morning you receive a punch in the face. Every night you go to bed, knowing the next morning you are going to start your day with a punch in the face. It hurts, but you are prepared for it. You, "take it like a man." Most days, you just take the punch and move on with your day.

But somedays, punch after punch after punch, you snap and spend your day crying and grieving and yelling at the person punching you and wishing the punching would stop, and knowing that the next morning, the puncher will be there, waiting to give you another punch in the face.

That's what this Alopecia journey feels like. Every day, I wake up to Charlotte's jammies full of hair, handfuls of hair in her brush, hair all over her pillow and the couch. And it just never stops. How does she even have any hair on her head anymore? How can this keep going?

Stanford said that most kids lose all their hair in 2 weeks. Charlotte has been losing hair for 2 years. I don't know if that is gracious or torturous.

I used to hold onto the thought that it didn't look as noticeable to everyone else as it did to me. Not anymore. Now, I see people staring at her, wondering if she's sick. "What's wrong with that little girl?"

People too embarrassed to ask me about it, whisper when I step away.

I just want to make a shirt for her to wear:

I HAVE ALOPECIA

The last thing I want is for her to lose all her hair, but if that is inevitable for her, let's just end the torture already. We can excuse the punching man, my face is sufficiently broken.

As far as her treatment goes, there is a little bit of regrowth occurring on her large front spot. Encouraging? I don't know... are we just going to continue this cycle of growth and loss?

Every day she asks me, "Mom, is my hair long enough to braid yet?"

Alopecia sucks.

Update

We just completed the 6 weeks of Clobetesol we set out to do. Sadly, we are seeing no growth. About 4 weeks into the therapy, Stanford recommended we add Retin A to her treatment plan.  Stanford explained it like this: Clobetesol suppresses the T cells and Retin A distracts them.

So now, 2 weeks into treatment with both medications, her head is getting red and irritated, but still no growth. She even had a little open sore last night; that broke my heart.

And, to add salt in our wound, she got a new spot last night right on the top of her head.

I don't really know how I'm feeling.  I feel peace that we are doing all we can to help her, and if she still loses all her hair, at least I can know we did what we could.

I feel irritated at how drawn out this has been. We have been chasing this for almost 2 years now. If her hair is going to fall out regardless of what we do, I'm ready for that to just happen and we can be done with all the treatment.

But of course, the last thing I want is for my baby girl to have no hair. So we press on.

I have a call into Stanford, so we'll wait and see what they say. At what point do we stop treatment?

I'm trying not to get too discouraged. I'm hoping that the growth will still come; that it is just taking longer because we aren't using the Minoxidil this time around.

I have been in contact several women that also suffer from Alopecia and each conversation has been incredibly encouraging. They lead happy, normal, successful lives. They are confident in their identity in Christ, not their identity in their appearance.  I know Charlotte will be fine with our without hair. We just love her so much.

Charlotte is surrounded by people that love her for who she is, not what she looks like. We know she is a happy, well-balanced little girl. We are teaching her that God made her special and she is beautiful no matter how much hair she has or doesn't have. But man, it is so hard to watch your beautiful little girl's sweet blonde hair fall in the trash. Most days I have complete peace about the situation, but sometimes it just hits me so hard and I have to take a few minutes and cry and grieve for her. 

And of course this beautiful face! 

Treatment

Okay, Alopecia....We get it, you win...

Jer and I have hit our limit. We have sat by idly for the past 3 months and watched our daughter's hair fall out. Day after day we prayed it would slow down, plateau, let us catch our breath and regroup, but no such respite has arrived. And so, we are waving our white flag and starting Charlotte back on topical steroids.

I know, I know...This is a huge 180 from what I said 3 months ago, but doing nothing is a lot easier said than done. I was not prepared for the extent of hair loss that was to come.

How can we sit here and let all of it fall out when we have a bottle of medicine in the cabinet that could stop it? Reverse it even. What if this round of treatment is the round that sends it into permanent remissions?

I think my breaking point was this: Yesterday, siting on the couch with Charlotte, rubbing my hand through her hair and pulling out large clumps (per usual) she looks at her lost hair and says, "Mom! Why are you taking all my hair away? I need that hair on my head!" I asked her, "Would it be okay if you didn't have any hair on your head?" through tears she responded, "No! I very need all my hair. Please stop taking it."

And with that, I resigned my dedication to a year of no treatment.

We have also read some stories about spots being less likely to respond to treatment after a certain amount of time. (No confirmation of that statement)

If she keeps up hair loss at this rate, she will be bald by the end of summer.

Here is a picture of how much hair you would have in your hand if you rubbed them through her hair one time:

So here is our plan... 4 weeks of topical steroids, followed by a 2 week tapper. We feel, even if the hair starts falling out again after she is off the steroids, she will have at least made up some ground in the meantime. So far, she has always responded to the steroids; we are praying that is the case again this time.

One thing we will be doing differently this time around is leaving out the Minoxidil. Stanford is very assuring that the excess forehead and back hair can be attributed to that medication. She has never been treated with just steroids, so we are extremely hopeful that the subtraction of Minoxidil will minimize extra hair growth. 

Yes, we acknowledge she can't spend her whole life on steroids, and that is certainly not our plan. But right now, we feel comfortable with a maximum of 2 rounds per year. This being round one. We will also continue to look into alternative treatment options to fill in the gaps. 

Thank you all for your support and encouragement. This has been such a difficult road. 

As with every parent, we only want the very best for our sweet girl. We pray that we are making the right decisions. 

Here is a glimpse of how advanced the hair loss has gotten. The pictures don't fully do it justice and it is beyond the point of covering the spots anymore with hairstyles. 

Update

Just a quick update. Charlotte is still losing quite a bit of hair. All the spots I photographed on the 10th continue to grow. We are praying that the loss slows down so we can sort of take a breath and adjust, but so far no signs of that.  I am still able to style her hair in a way that pretty much conceals the spots, so I'm happy with that. Jer and I are both feeling really positive that we have made the right decision for now.

Thanks again for all the support! We have been contacted by other people battling the same disease and it is really encouraging. Keep the stories coming!

Current Spots

So as we start down this road of no treatment, I plan to keep tabs on her spots and hopefully we can see some spontaneous regrowth! We started her on zinc and Biotin today.

Here's what she has going on right now.

And this beautiful face!