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Posted on October 10, 2020 at 4:00pm 10 Comments 1 Like
My baby girl was 11 months when she lost all of her her within a couple of weeks, then two months later eyebrows and eyelashes. She is 20 months now and she has white little fuzz hair and white eyelashes and eyebrows. We have another appointment with pediatrician dermatologist in January, till then I would love to connect with parents who have same problem and I hope to find out more stories.
All the best to everyone!
It is not nearly the struggle as it was in the beginning which seems to be where you are. We have met so many young people who have shown us that having alopecia doesn't define you. It gets easier. My granddaughter started out with loosing spots (alopecia areata). Her prek teacher was certain she was pulling her hair out. I kept trying to tell her it was alopecia but I dont think she ever believed us. She had long hair but not extremely thick hair. After the initial bald spot when she was one, we got medicine from the dermatologist, it came back, but another spot would take it's place. It seemed like we were constantly putting this foam medication on spots. We also were prescribed a cream, but I don't remember the name of any of them. She lost part of an eyebrow once, but got a shot and it came right back. Eventually is all came out. Her head was shiny and slick, no hair at all. I felt completely helpless and I wanted to help her more than anything. She was about 7-8 at this point. We started getting free hair pieces from hair club for kids, children with hairloss, and locks of love. All wonderful organizations. Finally she got the white peach fuzz all over her head which sounds like where you are at with your daughter. She doesn't have any other autoimmune issues yet, but she is more apt to get another one according to what I've read. Anyway, when she got the peach fuzz, she was ready to start getting shots in her head. She's been doing that for a while now. Her hair started to come back, but has not filled in everywhere. I cant remember the name of this, but the ring around the bottom of her scalp from ear to ear has never grown back. She is happy with what she has and it looks really cute. I don't know how long the peach fuzz would have stayed like that bc the shots worked and now we don't see the fuzz. It may be there in patches around the bald ring. Shots would not be something for young children. I hoped and prayed she would outgrow it, but that hasn't happened. She lives with roommates at the college she attends and feels comfortable going without her wig in the apartment. She still wont go out without it, but thats ok. She is under a lot of stress in college and thinks one of her eyebrows is thinning. I cant say that it was always easy for her. She did get teased in elementary and middle school. Middle school was the worst. Things got better in high school and college. When she gets a little older, look into taking her to a summer camp to meet other kids with alopecia. You can also find groups near you on this websites. We took her to alopeciapalooza (google it for details). We went with her and learned a lot. She mostly had fun:) Let me know if you think of anything else and just breathe:)