Alopecia World
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Three years old and miserable
In January I brushed my daughters hair and it started coming out in clumps. After four months, three doctors and blood test we were told it was alopecia aerta. Her baldness bothers everyone else more then her. She had super long curly hair. I wrap a scarf of hat on her to protect her scalp from the sun but it doesn't bother us or her. But her treatments are making her itch all the time and leaving welts and blisters. She so miserable for two weeks after her treatments . I really don't know what to do.
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Replies to This Discussion
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Permalink Reply by jayden thompson on
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What treatment are you trying?My granddaughter lost all of her hair when she was 18 months but the thyroid cremes are just not a opinion for me it was too many risks and now she 4 and she seems to be ok with not having hair.I will say that I am having more issues with it because I see how other children and adults respond to her and it is not always positive. I would like to here from others on treatments that they are using and if they are having good results, because mostly what I have read that treatment will grow hair but does not stay. I do tell her every day she is beautiful and work on self esteem.
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Permalink Reply by H's Mum on
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Look into anti-inflamatory diets, such as GAPS, SCD, Paleo. Kick start the hair growth with a steroid cream such as clobetasol propionate if you like and follow one of these diets - no cheating. Has your granddaughter been tested for celiac disease? AA and CD are often seen together. Treat from within, not just externally. Good luck!
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Permalink Reply by Cori on
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We are currently doing the dcp treatment. I was against it and still have questions for her doctor about trying something new. But good news is there is some new growth and it's thick and a lot coarser then the downy hair she had. Bad news is due to fair skin her clap is more sensitive to the soon now. And she hates hats.
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What does that treatment consist of and is it something painful? I have actually never heard of it and does the doctor seem to think that the hair will stay or is it still a chance in it falling out? I am trying to learn from others if it is any hope.
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It's this liquid that they paint on the scalp. It causes an allergic reaction so the body fights that instead of the hair. She itches all the time for about a week and blister appear. Horrible I know but she has started growing some new hair.
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It does sound horrible. When did she start losing her hair?Do you have other children in your area that have Alopecia?I have been looking into our area for another little girl that can relate to my grand baby and to actually find an adult that can relate to how I feel. People are cruel!Have you checked into wigs with Follea?They are really nice wigs that custom made for them and suction to the head so they do not fall off but I cannot afford them. I am still saving for one.
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We've heard of other kids with it but haven't met anyone. I tend to be a hermit so we don't interact with a lot of strangers. People are cruel, we're lucky she's not in school or daycare. The only people she's around know what's going on and have been super supportive. As far as wigs we think she's to young. Plus she fights stuff on her head. We only use hats and scarfs when we're going to be outside.
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I understand about being to young for a wig.I tell other's about the wigs just because if you can afford them they are real nice but me and my husband our job situation is not good at the moment and struggling to make ends meet.I hope I did not upset you to even subject a wig I like to help with information that I know about.Have you made any decisions about schooling?I am still thinking about home schooling but I also feel like I may do injustice by not sending her to school. I have enjoyed your feed back not many will reply back and this is here to offer support and we need it this hard on all of us that are faced with this but I also very grateful she is able to walk, run, and all around normal but that she just doesn't have hair.
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Not upset at all, I love wigs. I collect play wigs and stuff for myself when I want to change my style. She loves to wear my pink bob wig during dress up. She just hates having something on her head for longer then ten minutes. Always have she use to wiggle out of the newborn hates they give you at the hospital. We get the money trouble we've been blessed to have good insurance that covers treatments but it's still a struggle to make sure all the ends meet.
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Permalink Reply by madhu on
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Hi,
My daughter was in preschool when she lost all her hair within few months. Until kids are 5-6 yrs old, they don't question appearances. Older kids who she met at the park or at birthday parties uses to ask her if she was a boy or tease her about being bald. She would just explain to them saying she has a booboo on her head and walk off. My heart wd break into a million pieces and I always spent the night crying. At any stage in life, our kids will come across people who judge them by their appearance, we have to yeah them to be strong. Now my daughter is in KG and has hair, hopefully it continues. I remember going through the same phase questioning how she wd handle school. People on this website helped me with my queries. I'm glad we all have each other to help and support.
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I've wanted to homeschool since I found out I was pregnant. We live in a large school district that's not the best. My husband lets me stay home so we don't have to deal with daycare. He wants her to go to public school and gain better social skills and such. I just want my baby home with me all the time. But I know I have to let her grow up and face her own battles.
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Permalink Reply by Dena on
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My daughter is homeschooled and will be starting 3rd grade next year. So were her older brothers, so I can't really comment on public school. Alopecia wasn't our reason for home schooling it is just something we have always done. My daughter is involved in a lot of activities, so homeschooling hasn't affected her social skills. We spend a lot of time with homeschool groups, dance classes, gymnastics, church, etc.. Luckily she hasn't ran into any sort of bullying. The kids have honestly been great. Of course they have questions, but I have just made sure she understands what Alopecia is so she can have answers when it comes up. The only times she feels awkward is when she is starting a new class with a new group of girls. She was recently moved up on her gymnastics team and had to start attending class at another gym where she knew no one. I could tell it was hard for her that first class, but she adjusted quickly. But to be honest isn't it always hard to walk into a new class the first time, so maybe I was just attributing her nervousness to the Alopecia instead of being the new kid. Alopecia is horrible and I wouldn't wish it on any child, but I am glad that she is learning to deal with this at such a young age. I am sure it would be much harder to lose your hair in your teens. I would recommend homeschooling as long as you don't use it as a crutch to keep your kids away from others you are scared of bullying her. I think it is important to keep them busy socially. Isolating a kid because of fear is only going to hurt them in the long run.
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