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Children with alopecia
hi my daughter is 4 and has been diagnosed with alopecia arearta she has a full head of hair right now with 2 spots on the top of her head toward the back i keep getting told that there is no way of knowing how bad it will get it could get no worse than this or could get severe the not knowing is killing me and my heart breaks for what the future may hold you look on line and you see all kinds of horror stories but not much positive things anyone have a more positive outcome
Replies to This Discussion
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Permalink Reply by Karen Smith on
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This condition is so random and unpredictable. Hopefully it will regrow and never come back. If it gets worse you have found a great resource here to help with questions. You need to be strong for your daughter, she will take her cues from you. You can drive yourself crazy when this happens, trust me I know first hand. My daughter developed AU her senior year in highschool after one episode of AA her freshman year. I did not dream something this awful could happen and we could be ok but we are. She is off at college wearing beautiful wigs and looking great. She has plenty of friends and boys trying to date her. I wish it had not happened but she is fine and living a normal college life and I am having the dreaded empty nest blues. Enjoy your little girl there will always be something to worry about.Let me know if I can help.
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thank you very much for your response glad your daughter is doing well and i am trying to not let my daughter see how upset i am because I do know that someday as she gets older and if this continues she will need me to show her it is okay. thanks again stacey
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Permalink Reply by kdeff on
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I'm new to this site. My 2 year daughter just diagnosed with AA. Your words are very encouraging! Thanks :)
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Permalink Reply by Children's Alopecia Project on
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Permalink Reply by Davis McConney-Goode on
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Hi Stacey, I was diagnosed with AA when I was 3, and my parents got the exact same story. It was actually my hairdresser who found it told us what was going on, she'd got it as a little girl too. My doctor had no idea what was going on and we were forced to just leave it for a few years because there was no specialist in town or our neighbouring towns. It wasn't until I was about 7 or 8 until a dermatologist came in and was able to prescribe medicines and help us cope. The most important thing my parents did or tried to do was to not make a huge deal about it infront of me. Later on when I started paying more attention I knew they worried about me, about what was going on and what was going to happen, but for me they put on a brave face.
You really can't know what to expect, Karen is right, this is a very unpredictable condition! I think for girls it is actually easier to get it when we're young because we become accustomed to being this way, and our peers don't care! They grow up with us knowing what's going on, that is how I grew up anyway - and I live in a small town where I was the only kid who had AA.
The best thing you can do for your girl is be there for her, support her, let her cry to you and all the normal parent stuff. Just let her know she is beautiful just the way she is.
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Permalink Reply by Storm_Uchiha on
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I got diagnosed with AA at four too. It's a lot harder on your kid then you think not knowing if your sick...Doctors poking and prodding you trying to find out why it's happening. Just be there for her, remember that you gotta be the one to keep her confident and don't pressure her to wear stuff like wigs, or to try medicines...Some of them hurt to a point where the patient is screaming. (Happened to me. It was like mousse almost and it was experimental so guess what was the only way to test it? Yep.)
Encourage her make her happy and if she wants to cry...Let her cry. AA only gets worse depending on the invdividual. My hair fell out in chunks landing in my food. My mom was going to cut it one morning and when she went to wake me up I sat up...And my hair was on my pillow like someone took a razor to my head. Make sure whichever school she winds up going to have a strict bullying policy because it's gonna happen. It happens to everyone of us. Try to find support groups in the area, with parents who have kids with Alopecia too. Some of my best childhood memories were meeting other kids like me. I'll never forget any of them. One of them was the son of the Chicago police captian.
So..Just make it worthwhile. If she wants to express herself temporary tattoo's look awesome around the headl ike a tiara.
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Permalink Reply by Heather on
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I think it really depends on what you consider a positive outcome. If someone is diagnosed with Alopecia but their hair doesn't fall out completely or it all grows back, they are less likely to write about it online. It's usually those who are struggling with it that write about it. If you consider the only positive outcome to be all the hair growing back then I can't help you as I've lost all my hair. However, I'm super happy and I consider myself to be a "positive outcome". I've learned so much from losing my hair and as much as I'd love to have my hair back, the things I've gained from losing it are much more important to me. I lost my hair when I was 11 and I'm 18 now, and it has helped me grow up and learn about myself and figure everything out. Obviously there are tough times, but I honestly think it's worth it. I think you have the right idea - focus on the positive! That's what I did and I can honestly say it worked.
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Hi Stacey--
I know this reply is quite delayed, but I would like to hear how your daughter is doing. My 2 1/2 year old was just diagnosed and currently only has 1 spot on his head, but all I read are worst case scenarios. How are things coming along for you? A good friend, who is a pediatrician, has reassured me that most cases are not that serious. I guess we deal even if they are, though. That's why we're good mommies. :-)
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My daughter still has only the one spot for about 3 months now. It has not gotten any bigger or has not grown in with her yet either. I did the steroid injections which caused a dent, and the steroid solution for a couple months. I have just stopped all the steroid and I have just started doing the indian herbal oil which have no side effects to see how that goes I have heard good things anout it. I started last night I will let you know how it goes. It is the oils from the alopecia treatment center. It is so true that all you hear are horror stories especially on the internet, I have had a hard time with the wondering how it will turn out but I keep trying to say is it is only just hair but it is so hard to deal with the not knowing.
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That's good to hear. I've been told that 6-12 months is the usual time for regrowth, so hang in there. The not knowing is horrible and is eating away at me. I've gone through so many different emotions, and wish that I could just live in the moment and know that I will be strong enough to deal with whatever comes if/when it comes. Obsessing over it won't change the situation, but it does help to know there are other people going through the same thing. It's just so strange because we don't know of anyone in our family who has gone through this, has an autoimmune disorder, etc. We definitely have some allergy issues in our family, but that is it. I guess only time will tell. You will be okay, and so will I. And our kids are going to be just fine. :-)
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No one in my family has this either my daughters grandmother does have a thyroid issue though.. I know my husband keeps saying she is healthy and she is fine just live in the moment and whatever is going to happen will happen anyway whether i stress about it or not. It is funny my daughter has been singing her favorite new song, your beautiful just the way you are little does she know how appropriate that song is lol!! I do hear alot of things how kids do get over it and that they become stronger kids for it. I have been trying to tell her lately instead of saying wow your hair looks so nice I always tell her you have such a perfect face or I like how you have such a big heart and care about people, I am preparing her to not worry about her looks and know that it is important whats on the inside. Just in case. When was your son diagnosed
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