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?!?
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