Replies to This Discussion

Permalink Reply by Ann on October 7, 2008 at 8:45pm

I think that we acclimatise to how things are - we don't like it but we get used to it. It becomes normal. And then something else happens, like the eyelashes, and the whole boat rocks again. We realise again that our child has got (or not got) something that other children have. I think you are crying because the loss of eyelashes is something else you cannot control for your daughter and cannot make better. And parents want to make things better and right for their children. We are lucky that they do not have a life threatneing problem.
Wish I could help you.

Permalink Reply by Nancy Schmelzer on October 7, 2008 at 8:52pm

You are right, it is something I cannot control and every new thing brings grief sorrow , loss and then acceptance. I read today that as parents we try to teach our children to be better than we were, but some times a little angel comes along and teaches us how to be better. I felt better after reading that, because Lauren is teaching other people to stretch their minds a bit more to challenge what we believe is beautiful and accept her as she is....... Thank you for your comments- you helped more than you realize

Permalink Reply by Mom on October 8, 2008 at 9:29am

I also have times of great sadness over my daughter's AA, she will be 13 soon and has had it for 2 years. right now she has alot of regrowth but claims she is losing eyelashes (I dont see any missing yet) At this point I I think that will be worse for her to deal with than the hairloss on her head. We are trying to be optimistic but not say to her "see its all coming back!" because she knows it might not stay. I too cry more at times about it, sometimes I feel more "ok" about it and know she looks to us for strength, empathy and a "safe place" at home. She knows we are sad about it too but I do also hide my tears for the most part from her. So I can tell you I dont know how we all deal with this but you just do, one day at a time. This site is a blessing for her and me "online therapy" as we call it here at our house. Your daughter sounds like she is pretty adjusted to her AA-She will get stronger as she gets older too. Take Care

Permalink Reply by Nancy Schmelzer on October 8, 2008 at 10:55am

Thank you Amy, I appreciate your thoughts. Lauren is pretty adjusted and we have all done really well. I think the eyelash thing just brought back all the feelings of loss of control. I agree that this site is a God send. I only joined yesterday and can't believe the feelings of relief. There is no one who understands more than another parent who is going through the same thing. Tell your daughter to hang in there and that I send her an online hug from our family. Take care-Nancy

Permalink Reply by Cindy on October 10, 2008 at 7:30am

Hi Nancy, my daughter is 6.5 yrs old. She has only had AA for just over a year, but in that time she has lost her eyebrows and lashes. She lost her eyelashes and her last brow shortly after her birthday. It was really hard to watch and the best thing we can do for our kids is be supportive. Unfortunately, we can't do anything to stop it. We always tell Sam it doesn't matter and maybe it will come back. Right now Sam is not phased by her AA. I honestly don't know if her attitude will change as she gets older if her AA does not reverse itself. She is having regrowth right now and honestly I am the one that will be more upset if it stops. But, we have to put on a happy face for our kids. Your daughter sounds sweet and just keep building her confidence and acceptance. As our kids get older they will mature and hopefully the kids around them will be mature enough to understand what they are going through and be supportive. I hope I just made sense.

Sam is surrounded by great friends and adults. She participates in sports that she enjoys and her coaches have been wonderfully supportive and really have helped build her self-confidence. I think because she has these people in her lives Sam has been very accepting of her friend Alopeica. I suggest you find something your daughter loves and run with it. It will give her an outlet to go to. Cindy

Permalink Reply by Nancy Schmelzer on October 10, 2008 at 9:24am

Cindy, Thank you for replying. You made a lot of sense. Lauren is really into swimming so I want to help her along those directions. You are right though, a happy face is needed. Thanks again
Nancy

Permalink Reply by Holly Campbell on November 4, 2008 at 2:49pm

I am a mother to a 10 year old son with Alopecia.. sometimes it is every hair on his body and sometimes it is everything but his eyelashes and eyebrows. He has been affected for 2 years. We were having great sucess with regrowth using prednisone to suppress the immune system. About 3 weeks ago everyhing on his scalp fell out.. He still has his eyebrows and eyelashes. This second period of losing is hair is extremely hard on him. He had huge hopes of being able to go to school without a hat by Chrismas. I am not sure what the emotional stages of alopecia are, so I do not know what is normal.. At this point he does not even want to talk about his hair.. I don't know if this is normal or if he is denial.. I don't know what is emotionally healthy.. To ignore it? to give him time to talk about it himself? We have an appointment with a therapist on Thursday. His self esteem is crushed.. He does not think anybody will marry him, go with him to the prom or ever date him.. Everynight, he cries.

I constantly tell him it does not matter to me what he looks like to me.. I love him regardless.. He is very sensitive..

Permalink Reply by gymtee on November 5, 2008 at 1:35pm

Hi Holly,

My son is 8 and has only gone through the loss of his hair (90%) once so far, so I can't speak to the feelings of regrowth and subsequent losses. I'm trying to prepare him in advance by letting him know that re-loss is a likely possibility if/when his hair does grow back. I'm not sure there is a defined 'normal' everybody is emotionally different. We gave our son some space for a few days when he didn't want to talk about it, but then we started telling him that we needed to talk about it with him so we could help any way we could. After a few more days of telling him we needed to talk but not forcing him, he finally said he was ready one day when we asked.

As far as new people not liking him, consider asking him why he likes the people he knows now. Is it based on their physical attributes or because they are nice and like the same things he does? Then ask if he thinks other people make friends the same way. I know it may be harder for him to approach people to be friends when he has low self esteem. Let him know that the sooner people get to talk to him and know him, the sooner they'll start thinking of him as the nice/funny/cool kid who likes the same music/tv/sports/stuff they like. Hope this helps.
Jim T

Permalink Reply by Nancy Schmelzer on November 5, 2008 at 6:08pm

Hi Holly,
I am so sad for you that your son is sad. What you wrote just made me cry. What your son worries about are the things I worry about for Lauren.I keep reading this site for hope. I want to be strong and hopeful for her. I validate her feelings and let her know she is not "crazy" for feeling what she feels. I think you are doing a great thing in taking him to a therapist. And if this one is not the person for your son, keep looking until you find a person he can connect with. I don't know if this helps, but while researching some medication(Lumigan-helps eyelashes grow) for my daughter at her eyedoctor, he told me his son-in-law has AU. He says he loves his son-in-law and he is a great person. Now this dr is handsome, so I am assuming his daughter must be cute too. So.......... there is hope for our children. Good people will meet good people. Tell your son this so he will have hope.Hang in there and let me know how things are going.-Nancy

Permalink Reply by estrella on November 10, 2008 at 10:20am

Sadness is part of alopecia. I feel sad every time my six year daughter loose hair. What I keep in mind is that life is more than alopecia, I keep going looking for happy moments for us, and most of the time we success.

Permalink Reply by Maygensmom on December 9, 2008 at 4:15pm

I have a 13 year old daughter who was diagnosed with alopecia when she was 2. She lost everything, peach fuzz and all by the time she was 3. One day I told her, "Maygen, you do not have to have hair to be beautiful. You are already so beautiful." She crawled up into my lap and replied, "but Mommy, if God give me books and toys, then God will give me hair." I was humbled. At 5 years old most of her hair had returned and she started onward with school. Now at 13, she is working at being the top GPA in her class, as well as the top volleyball, softball, and basketball player at her school. She has many friends. She turned 13 in October and her hair started falling out again. Wow....what an experience to go through again. My daughter saw that I had been crying and asked me, "Mom, why are you so sad?" I replied, "because you are loosing your hair again, and I can't make it stop." I went on to say, "I guess what I really need to know is, how is this affecting you? What are your thoughts about loosing your hair? How are you dealing with this?" She said to me after a moment of thinking, "I guess there is a part of me that is thankful that I have AA." After lifting my jaw up off my lap, she went on to say, "You know mom, I am really smart and I am a good athlete. Having AA is what keeps me humble. It is what keeps me from being full of myself or snobby. It keeps me being me and I like being me." Again, I am humbled.
My advice is to love your child. Be prepared to help where help is needed. Provide them an opportunity to share what they are thinking and feeling. Encourage them to find the inner beauty....it last longer. Pay attention to the AA targets. What brings it on? Maygen has always lost patches so we would use steroid drops and most patches would regrow hair. We really think that stress is her main target. She is top in her class so she is always concerned with her grades. She plays as a starter for travel softball fastpitch, school volleyball, and basketball. She is also on the student council and on the superintendent's cabinet. She also competes in 5 UIL events. We have eliminated some of the factors that contribute to her stress load. Most importantly, stay optimistic. Believe and pray together. :-)

Permalink Reply by Nancy Schmelzer on December 9, 2008 at 4:42pm

Thank you for your uplifting words. I really was having a bad day when I wrote this. Things are much better now. Lauren still has no hair, no eyebrows and some of her eyelashes are gone. What she does have among so much is a great personality and lots of humour. I was talking with a family about my greying hair and the other person was talking about hair color, etc... Lauren who we didn't even know was listening told the lady, I wear a wig and won't have to worry about grey hair ever! I started laughing- what a great kid. She then went on to educate the other family about alopecia and her insights into this. Lauren makes me humble every day and greatful to have such a good kid. Your daughter also sounds wonderful. She sounds like she thinks about life and doesn't take things for granted. Again- thank you for your words-Nancy

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