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 Cori on
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I know she's going to be bullied, hair or no hair. Kids are cruel. I mostly want to home school so that she can learn at her rate. Not just repeat facts like a parrot. Our schools are so big and understaffed that she wouldn't get any attention. The only problem is I have some sort of number dyslexia thing. This site has helped so much. We've all learned to relax that we're not the only family going though this. So she's relaxed and if gaining more confidence.
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Permalink Reply by Dena on
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Cori.. My advice would be to find a homeschool group in your area. They will be able to tell you about local coops that may be able to help you teach the subjects you are not comfortable teaching. My biggest fear was teaching creative writing. We found a local coop that taught creative writing. The lady who taught my boys who were high school age was a published writer. It didn't cost anything because I taught a elementary history class. You would be surprised the resources that the local home school group can tell you about. Especially if you live in a big town. I know your daughter is still young, but we have a lot of families that join our homeschool park days that have children who are not school age. There are always little brothers and sisters there for them to play with. Most of them are just curious and want to learn more about homeschooling. I am sure they would love to tell you more about how they homeschool. Some decide to homeschool and stay and some decide it isn't for them. I have no problem with public schools and understand that homeschooling isn't for everyone. If you find a group and they spend all their time trying to guilt you into homeschooling, I would find another group. It is a good way to learn from people who are actually homeschooling, and then you can decide what is best for your family. I have been homeschooling for 13 years and I won't lie, it is a lot of work. But even after all these years, I would do it all over again.
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Permalink Reply by Lori-akaMimi on
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I totally agree with what everyone else has said here. Leave it alone. Why put her through these treatments if, as you said, her baldness bothers "everyone else" more than it bothers her? Follow her lead - and your own instincts. One day at a time... You're handling this great, Mama!
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Newest update, her doctor feels like we can stop the treatments that she has enough regrowth. My aunt from two states away sent her some princess wreaths to wear. Went to the zoo yesterday and had a scarf on because it was sunny. Some woman got really angry and asked if she had cancer in the rudest voice I have ever heard. I politely said no just alopecia. She glared at us and stormed off. Did I miss a memo or something, can you only wear hair wraps if you have cancer?
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