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9 months old with Alopecia totalis
my baby girl has lost all of her hair, eye lashes and eyebrow over the last few months. I am so worried and I don't know what to do. A dermatologist diagnosed her with Alopecia totalis last week and he referred me to pediatric dermatologist to see next week!
I just need to share how I Feel cause I am scared for her, my baby girl will not have any hair. I don't know what I can do to help her! I have been praying non stop and crying non stop. how am I suppose to deal with this and how am I suppose to comfort her when she start to realize she is different. please help!
- Leah's Mom
Replies to This Discussion
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Permalink Reply by Alo-mom on
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Please contact the National Alopecia Areata Foundation. They have a great support system for Children with Alopecia. They give you information on how to work with schools and your children classmates. This is a hard thing to tackle and you are going to need some guidance. There are support groups you should look into. The conference this year is in Phoenix June 28 to July 1, 2018 and there are many children there your Childs age. My daughter has AU since she was 21. It has been a harder journey for me but my daughter is my hero and with her human hair wigs and natural looking eyelashes and a trained hand in putting on her brows she is beautiful. She is engaged, has a wonderful career and friends who adore her. This does not have to stop the show but I do agree it is a heart breaking event in ones life and that of a parent. "Happiness comes in proportion to acceptance." Michael J Fox said this and I think of this all the time.
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Permalink Reply by Leah on
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Thank you so much for your reply. I really appreciate the info and the reassurance. I hate the fact the doctors keep telling me they have never seen it in a child my daughter's age...i am going to look into it.
Thanks
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I can tell it's a very hard time for you, and I'm sorry. I didn't get alopecia until I was 35 years old, but I do know a thing or two about growing up and realizing you're different, because I was born with Lobster claw syndrome. Children are resilient and it's important to remember it's her normal. It may seem odd to other people, but it will be what she is used to (assuming she doesn't grow hair, she's so young that who knows at this point?)
Alo-Mom is so right about the NAAF. There's a nice youtuber named Laura who grew up with alopecia and she says they helped her connect with friends like her at a young age. She's one of the rare lovely people that actually responds to comments also. Here's a video where she speaks about some of the good things her parents did to help her grow up with alopecia: https://www.youtube.com/watch?v=-XlMqxVdQns
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Thank you so much for your reply. it is so nice to see her having so much confidence, it is very encouraging.
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Hi Leah! My daughter is 20 months old and was diagnosed with AU. She started losing her hair at 16 months. I know all the emotions you’re feeling, if you need a friend or just want to talk it over, please feel free to reach out. My number is(405) 306-3662. Just know that your daughter is beautiful!! And will be okay. I promise.
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Permalink Reply by Clairebear on
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My grandson had patches at 3 months. He has been bald and then regrew his hair for abut 3 years. He just turned 5 and will be mostly bald by the time he starts kindergarten. His first regrowth came shortly after he started using clobetasol, but since his parents have been lax about following the instructions, his hair has started to go. They feel it didn't help that much, but I'm thinking they weren't using the medication as instructed. I feel your pain so much. I have spent many nights crying over this and the child doesn't even know he has it! He is healthy and happy. I just keep thinking abut how cruel other kids will be when he starts school. I'm a teacher and I know how mean some kids are. There is a little girl at his daycare with alopecia. She wears a cute little wig. A little boy doesn't look right in a wig so I guess he'll have to get used to wearing a cap. I have been depressed and sad for so long and even been on anti-depressants over the whole thing. His parents haven't been willing to participate in the support groups and I hope they will in the future. I almost went to the conference by myself this year. I hope you can find support for you and your baby girl. Glad you are reaching out. I keep telling myself I should be thankful he is healthy, smart, and happy, but I still get down about it. Prayers for you! - William's Grandmom
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Hello Simone
thank you for sharing your information with me and for the encouragement . I will be defiantly contacting you, where are you located? it has not been easy at all...but I keep looking at how beautiful and smart she is that I know she will be ok. I thank God that she is healthy otherwise. Looking back, my daughter is highly allergic to EGGs and they gave her the flu vaccine (incubated w/ egg protein) and that is what triggered it all. since the hair loss, I have been so cautious with her diet (pretty much she is on a VEGAN diet- she had dairy issues too) and I have told her doctors I will no longer be giving my daughter any vaccine for the time being. Her lashes grew back and her eye brows are coming in slowly. However, her hair still missing. I am still hopeful and trying to figure things out slowly. her pediatric dermatologist wants her to start on Protopic but I am refusing the treatment due to the slight risk of cancer!
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Hello ClairBear
thank you for your prayers. I have been praying so much for my little girl. I just fear the other kids in school when she is older, but I see how strong willed she is which gives me confident to know that she will be ok. I am excited that her lashes are coming in and her eyebrows are slightly showing. however, her hair is still not there at all, but I am hopeful. I too, not giving my daughter any treatment! I am an eye doc my self and I know the risks with treatments. I have been reading many journals and I realized there is no Real cure and the risks are present with every treatment. I rather her be Bald that get a reaction or a disease. so don't worry about your grandson because he is not taking anything, it can be for a reason. I will be praying for him too. I know of an ophthalmologist with alopecia totalis who wears wigs to the hospital here in LA- he made it so far in life, married with kids and a high degree!
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