Hi Rhonda,

Thank you for your message. I’m sorry to hear that you have been struggling with you granddaughter alopetia.

I have a few questions if you find time to get back to me I would really appreciate it.

Is your granddaughter struggling with alopetia with patches or Alopetia Universalis or Totalis?

Does she has other autoimmune disease?

Did she ever had full hair back? If yes, for how long? 

My daughter got bald really fast (11 months) and lost her eyebrows and eyelashes (14 months) and now she is 21 months. She has white hair (peach fuzz) all over her head and same with eyelashes and eyebrows. I wonder if that is a regrown sign. Is it eventually going to turn into terminal hair or it can sit there for years like that and fall off completely again. Did your granddaughter has regrown and did it look like that?

Sometimes I’m hopeful that children can outgrow from autoimmune diseases, like my son did. He is 9 now and he had autoimmune parotitis for few years when he was little. 

We are seeing paediatric dermatologist in January, till now I’m trying to find out more stories, more information from people who actually are going through this. At the moment that condition doesn’t effect my baby so I can’t even imagine the emotional struggle that might be coming in the future. 

Hope your granddaughter is well and happy. 

All the best and I hope to hear from you soon. 

Maggie 

Hi, The rashes were a sun burn like red raised rash. It could be itchy and it lasted about a day or two and then it went away or faded. I would put the stuff on during times Sam would not be wearing her wig, usually after school and on the weekends. But, she did wear it at times, we just covered the treated area with a band-aid. About 6 months into treatment Sam developed a full body rash and we took some time off and a few weeks later was the beginning of her regrowth. I am not going to say it will work for you. The experience is different for everyone. Whether some don't get the rash or just don't like the discomfort that comes with it. Sam never complained about it and tolerated it at a young age. She will tell you that it was worth it. I would never do anything that she was not comfortable with such as the shots. She'd rather be bald then put needles in her head and I am fine with that. The treatment does not work over night. Everything I read said you needed to give it several months before you may see the regrowth. She has one area that is still growing in, the nape of the neck in one spot. I have seen a spot resurface twice. I treated it aggressively both times and the hair grew right back within 3 months. I have asked the doctor if I will ever have to stop. She tells me it is my choice and that her body's hormones are always changing so should continue to respond. Now, 3 yrs later I do it once a week and I if I see something I treat it more. There are times I do it biweekly. I don't follow a rigid schedule anymore. Twice a week we put steroid cream on her eyebrows and we don't treat the lashes. This new profile pic is her regrowth 2.5 yrs later. Her hair grew back curly when she had straight hair. LMK know if you have any other questions.

Hi Rhonda, I am sorry it took so long to get back to you..I don't get on here as much these days. I will send you my private email. Sam has been excited to get the emails.

Sam did the SADBE aka squaric acid treatments as soon as all her hair feel out. That was 3 yrs ago. It is one of the irritant treatments that produces a reaction in the form of a rash. You need to get the rash or there is no chance that body is responding to the treatment. The idea is that we are tricking the immune system and it lets the hair follicles grow. I know of some others who have tried it because of Sam and it has worked, but it does not work for everyone. Samantha's eyelashes have yet to return, but you never know. She gets a few here and there, but they don't stay long. She has most of her brows. You can google SADBE to read more or I am happy to give you more of our experience when I have some time to write it all down. I know if you read through some older posts on the subject I have posted my thoughts. take care, Cindy

Hi Rhonda,

It is nice to hear from you. I am glad the hair club has worked out for your grand daughter. Sam has regrown all of her hair except eyelashes. She has been doing the squaric acid treatments.

As far as the web you would need to either log out to rejoin to create the page or maybe set it up from another computer you don't log into FB with to set it up. Just follow the steps when you do the join now. You may need to use a different email address as I did. You can simply create a free gmail or hotmail account to use. Samantha has her own gmail account, and she likes it. It lets her do different things, age appropriate in the body of the email. Hope this helps..Cindy

oops. Thanks for the gift Rhonda Kelley

Hi! I feel for your granddaughter. I still have some hair left so mine is a custom made European human hair clip on one. It was actually made for someone else who ended up not buying it, so i got it discounted, but it was still quite pricey. The hair is hand sewn in to make it flow more naturally. I am an extremely active cow girl. I spend my life on the back of my horse any chance I get, but I actually don't wear my wig riding. My horses don't mind me being bald. =)
I am trying to make this one last as long as possible.

Thnx so very much!! God has wonderful plans for us!

Hi Rhonda, Samantha would love to write to your grand daughter. Sam also has her own page if you search Samantha, but an email to my inbox works fine too.Sam will respond. Good luck wit the hair club. Cindy