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! 

Answering Some Questions

First of all, I cannot thank you all enough for the outpouring of love and support for our sweet girl. With this incredible community standing behind her, we have no doubt she will do amazing things in life. You all will be standing by her side showing her how beautiful she is regardless of how much hair she has on her head!

So we've had a few questions I thought I would answer on here:

There are 3 types of Alopecia: Areata, Totalis, and Universalis. Charlotte currently has areata, which is the round spots of baldness. Totalis is no head hair and universalis is no hair anywhere. At anytime the disease can move from areata to totalis and back again.

Charlotte was diagnosed at age 2. She had had the spots for a few months before that, but I didn't actually ask the doctor about it until her 2 year well child visit.

The average age of onset is 9, so she is very young to be battling this.

According to Stanford, when it goes dormant, it usually stays dormant for a few years. This relapse is her 4th in one year.

So, it appears that she has a rather sever case of areata. However, Stanford was incredibly encouraging, saying that the severity of her case DOES NOT increase the likelihood of moving to totalis or universals. That percentage is 10% and is the same for everyone. We were happy to hear that.

This is a frustratingly unpredictable disease. She could lose all her hair, be bald for 6 months, then randomly it could all grow back. Or she could never lose another strand of hair in her life. Or she could lose it all and it would never grow back. You just really don't know, and there is no way to predict it.

The only thing "they" have linked to outbreaks is stress. But really, how stressful is the life of a 3 year old? We have been careful not to push her too hard on major life changes (big girl bed, etc.) but none of her outbreaks have been linked to anything extreme in her life that we can pinpoint. We don't want to drive ourselves crazy trying to find a reason for the relapses. It's just random and no sense in trying to figure out a cause.

She has been on topical treatments off and on since her diagnosis. She was on Clobetesol, Lydex and Minoxidil. The steroids, though strictly topical, were very hard on her body. She lost weight, was covered in bruises, low energy, etc. That is a huge factor in our decision to stop all her treatments.

She does respond to the steroids, but as soon as they are out of her system, the hair falls out again. She obviously can't spend her whole life on steroids. We feel like we gave those a good try, spent over a year with them, and now it's time to move onto something else. We have read innumerable examples of people with severe alopecia that have had 100% spontaneous regrowth.  We are praying that's what happens with her.

We started treatments as soon as she was diagnosed so we have never given her body a chance to grow hair on its own.  Other than natural options, we are committed to one year of no medications.

We have no idea what to expect over this next year, but we are fully prepared for whatever happens!

Hope that answers some questions you might have had, and feel free to ask whatever else you might be wondering!

From the bottom of our hearts, thank you all again. Where would we be without you?!?

Announcement

Oct. 25, 2012 - Yesterday might have been one of the most difficult days in my 2 years of parenting.  Charlotte was diagnosed with Alopecia Areata. Essentially, an auto immune disorder that attacks the hair follicles leading to bald patches. I had been noticing some bald patches for months, but never thought much of them. They seemed to be getting worse, so I decided to ask about them at her 2 year check up.  Expecting, "Oh, it's nothing, don't worry." I got the devastating news that this was a permanent condition.

Jeremy and I spent the afternoon processing, crying, researching. Best case scenario, the hair grows back and she doesn't have another reoccurrence. Worst case, she could be completely bald.

The hardest part is not knowing what will happen.

Right now, we are waiting for a follow-up appointment with a specialist. I wanted to document this privately, so I can look back and see how far we have come. We are praying for a miracle here. 


Nov 12-  Charlotte had her dermatologist appointment today. It did not go well. The doctor was very concerned about the severity of Charlotte's hair loss, especially considering how young she is. She wanted to start topical steroid treatments immediately. I was a little wary about this, but when I expressed my hesitation, she promptly told me that without treatment, Charlotte will most certainly lose all her hair. She also ordered a slew of blood work, which makes me absolutely sick to think about having drawn. The appointment was extremely difficult and I am feeling pretty discouraged.

Nov 15- I had Charlotte's blood work done and it went shockingly well. She hardly cried, and was super thrilled about her reward toy.  The good (ish) news is that all her labs are normal, no thyroid issues.  Her iron is low, but her hemoglobin is normal, meaning she is not anemic. She will be starting on supplemental iron, but I don't think it is very necessary. I will address this with her doctor at the next appointment.

Nov. 25- Charlotte has been on steroid treatment for 2 weeks now. It is difficult to tell, but I do think some of the spots might be responding positively. This has been such a difficult journey so far. Some days I feel really hopeful, like the treatment will work and this will all be behind us soon. Other days, I feel completely hopeless, absolutely convinced she will spend her whole life in wigs. We have been praying for her nightly. I would love to give God all the glory for regrowing her hair.

Dec 29- I can't believe I never updated this blog. We had Charlotte's follow-up appointment in Redding and it was the most horrific experience. The Dr. essentially threatened us, saying if we don't put her on oral steroids, she will undoubtedly go bald. We felt so uncomfortable with this (based on research and professional opinions) that we decided to get a second opinion. I called around to UCSF and UCD and would not have been able to get in for weeks. On a whim, I called Stanford, and unbelievably, they were able to get us in the next day! Without batting an eye, Jer took the day off work and we drove down there. The drive was incredibly smooth, we made it with plenty of time. The hospital is less than 2 miles from Michelle and Greg's apartment, so Ryderman hung out with Auntie 'Chelle while we took Charlotte over to her appointment. We walked in the door and were taken back immediately. Everyone was so nice. The doctor explained that the baldness in the back is more resistant to treatment and recommended sticking with the steroid cream for longer. We also added Minoxidil. She agreed that putting a 2 year old on steroids was a terrible idea. We were so relieved! Praise God we were able to get a second opinion. Now, 2 weeks later, we are really starting to see some growth on the back. The top spots are almost impossible to find at this point.

We are feeling so grateful and giving all glory to God for the growth we are seeing. We will check in with Stanford in 4 weeks and decide our course of treatment.

Jan 25, 2013- I had our follow-up phone call with Stanford. It went really well. The doctor was very positive and encouraging. She was pleased with Charlotte's response to the treatment and gave us the green light to start weaning. Hooray! She said to wean slowly and monitor for relapses. If we see a new spot forming, we can resume the steroids and Monoxidil twice a day.  She also mentioned that, because this is an auto-immune disease, it can be triggered by stress. I had never considered that. She said to try and keep major stressors to a minimum (big girl bed, potty training, etc.). We are excited and hopeful, but also apprehensive.

Jan 31, 2013- Over the weekend, after our follow-up appointment, Jer and I both separately noticed increased hair growth on Charlotte's forehead and back. It seemed like it came out of no where. I called Stanford and they assured me that as she comes off the steroid, the hair will fall out. The more we started researching and assessing her, the more side effects we noticed.  She is completely covered in bruises, she has sort of a grey undertone, she sleeps a lot, she has been sick for 2 weeks.  We are kicking ourselves for keeping her on the steroid for too long and are extremely anxious to get her off of it completely.

February 20- Charlotte is completely off all her medication. The forehead hair and back hair are still severe. We have noticed an incredible jump in her appetite and energy levels though. I hate the extra hair, it looks so out of place. It cannot fall out soon enough.

March 16- We are devastated. Tonight I noticed a new spot on the front of Charlotte's head. We were not emotionally prepared for a relapse.  We are a at a total loss. The most difficult part is the location of the spot. It is right on her hair line, so I can't tell if it's a relapse or if it's the forehead hair starting to fall out. It absolutely looks like an alopecia spot, but I am praying and hoping it is the forehead hair.
We have so many difficult emotions swirling around in our heads and hearts right now, but mostly we have just spent the weekend crying and grieving. I will be calling Stanford Monday morning, but at this point I don't really want to start her back on anything until all the extra hair falls out.

March 9, 2014 -  It has literally been a year since I visited this blog. The last update was Charlotte's first relapse. Over the past year she has had 2 more relapses. Every time she relapses we follow the same pattern:  restart all the topical medication, after 8 weeks, hair starts to grow back in, she gets extra hair on her forehead and back, we wean her off the medication, and within in 3 months all the hair is falling out again. And so here we are. Enough is enough. Our baby girl can't live the rest of her life on steroids. We have done countless hours of research and spent many, many hours in prayer and discussion about where we should go from here. Jeremy and I have decided it's time to just let the disease run it's course. There is lots of strong scientific evidence showing that this disease can heal itself, given time. She has spent over a year of her short life dealing with creams, and tests and appointments, etc, and we are tired for her. We were hopeful that it wouldn't come to this, but here we are.

And so now, this blog is becoming public. We are telling the world what is going on with her because the spots are soon to be very ap
parent.  And we are okay with it. And her sweet little self if completely oblivious. We are relieved that she is not going to be enduring any treatment at this time. We are steadfast in our prayers that this will not haunt her her whole life, but if it does, then so be it. She is a beautiful, incredibly healthy, intelligent, funny little girl with or without hair. She is strong and stubborn and we know she will succeed in life no matter what obstacle she has to overcome.
We praise God daily for her health and her spirit. We know there will be hurdles along the way, but she is surrounded by family and friends that love her unconditionally and will stand by her side through it all. She will be the strongest person any of know, nothing will get her down!

Thank you for reading this, if you made it this far. We are so thankful to all of you. If you want to join us in praying for Charlotte we would be so appreciative. I will keep this updated as we journey through this disease with her. Our next plan is to try some natural treatments and see how that goes.

Our hope is to keep conversations about this to a minimum in front of Charlotte. Hence the reason for this blog. Right now, she is blissfully ignorant that she has anything different about her, and we want to keep it that way as long as possible. Jeremy and I are both more than happy to talk about it or answer any questions you might have, we just ask that you do so not in her presence.

Thank you all again for the love and support.