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!
Wednesday, March 19, 2014
Monday, March 10, 2014
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.
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?!?
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?!?
Sunday, March 9, 2014
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.
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.
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