Not sure how to deal with this

My now 14month old was diagnosed with AA 3 months ago. 2 spots have now turned into almost no hair left. The strange thing is it isn't bald psots - its thinning spots. But they are spots and now almost all over his head. He only has a few patches of thick hair left.

I have good days and bad days. He was born with hair - beautiful long dark hair and now its all gone. I KNOW ITS JUST HAIR. I know it will make him a better person in the long run. I know he will survive this. But I can't help but feel my stomach sink every time I think about it. I can't help but feel like I need to do something. Why doesn't anyone research this? No one's finding a cure or even a concrete cause. I know there are worse diseases out there but why does that mean it has to be ignored??? I'm so sure this could be cured so easily if someone would just do something about it. Then our children wouldn't have to suffer.

Sorry for my rant. I just don't know what to do or who to speak to. I supppose I'm still dealing with it. I keep wondering what can I do to stop this or reverse it.


I can't find any answers. I pray to God that this never happens to anyone else!

Thank you!

Views: 5

Replies to This Discussion

Permalink Reply by Brianna and Mary (mother) on November 27, 2009 at 9:54am
Fizza I now this is hard to deal with My daughter was ( when she lost all her hair and the doctor diagnosed her with AU. At first I thought my daughter was cutting her hair off then I noticed the bald spots. Then I thought it was something I did and all I did was cry because I felt so bad that their was nothing I could do for her to make her hair grow back or to make her feel better again. But with a lot of prayer and a daughter who tried to make me feel better by saying "Mom it is not your fault" made me feel better. I know it is hard for her being a girl and not having any hair and she has a twin brother was says he wishes it was him because he is a boy and says he can tell people I like cutting all my hair off. They have made me appreciate them so much. I just keep praying that she wil get her hair back. She has a lot of faith that God will restore all the hair she has lost and I love her for her amazing strength and courage. She takes it alot better than I do. As parents we want to protect our children from anything that will cause them pain but we can't so we have to be strong enough to help them through those times. Don't lose hope something will change and you will be able to deal with it more. God bless you. Mary, Brianna's mom
Permalink Reply by Jess (Jordyn's Mom) on November 27, 2009 at 10:11am
Amen Mary...Kids are stronger than we think...sounds like you have 2 very special children..Its amazing Fizza how our children seem to comfort us on this..My daughter also was born with a head full of thick black hair..at the age of 2 she was diagnosed with AA which turned into AT. We just wish it was us. Don't wish you could stop it. The way I see the whole alopecia thing is..if the white cell weren't killing the hair folaclesthey would be doing much more harm somewhere else..thats one way to look at it...You will get through this Fizza..you have come to the right place..we are all going through it in some way or another whether it be a parent or child!! Stay strong and we are all here for you!!
Permalink Reply by Mandy ( Bradyn's Mom) on November 27, 2009 at 10:39am
I concur that kids are stronger than we give the credit for. Bradyn loves to show people her regrowth when people who know about her AA asks about it. Yesterday at dinner my uncle asked about it and Bradyn came right over, lifted her hair ( her spots are very well hidden due to her loss pattern) and said see its growing back.
Permalink Reply by Jess (Jordyn's Mom) on November 27, 2009 at 11:04am
That is absolutely adorable Mandy..oh my!! Don't we all wish we had the strength they do! I believe it forms a better person all around!
Permalink Reply by Larry on December 9, 2009 at 10:12am
I agree that children accept the hair loss sooner than their parents. I think it helps when people your child comes into contact with know about what Alopecia is. I know that your child is 14 mos. old, but as he grows up its best not to hide the hair loss but educate him and those around him so there is no mystery of other reasons for the hair loss. My son was 5 when we learned why he was getting bald spots. We educated ourselves, his childcare, school, family and friends when we new what it was. he is 14 now and has AU and he does well in school and is very active in sports playing on travel and school teams and he never complains of any teasing or bullying.

My best to you and your child this holiday season.
Permalink Reply by Christine Messner on January 3, 2010 at 2:35pm
I sooo feel what you are saying I feel very frustated at this disease also...Everything you just said has ran through my mind almost everyday....

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