Replies to This Discussion

Permalink Reply by Sara on January 30, 2009 at 6:44pm

I am so sorry. I know how you feel! My 2 year old lost all of the,hair on his head in a 3 week span. Everyday I cried on my way home. Now it is all out and we are just waiting to see what will happen next. I check his eye brows and lashes every chance I get and freak out when I see even a single lash out of place. I hate not being able to control this - that there is so much that is unknown- WHY!! It helps me to everyday just tell myself I have no control over this I am doing the best I can and my child is perfect with or without hair. This little affirmation has helped me so far. Sorry I couldn't be of more help. But know that we are thinking of you and your family.

Permalink Reply by Melani Molina on January 30, 2009 at 7:28pm

Sara,

Thanks so much for your response. It was actually very helpful. I'm glad to know that I am not the only one constantly looking for more hair loss. I am so sorry that your son has lost all of his hair. This disease is so emotionally devastating. I try to tell myself the same thing you tell yourself--some days it works great and some days, not so much. Maybe it will get better over time. We have only been dealing with this a couple of months, so right now it all consuming. I will keep you and your family in my prayers. Thanks for the support!

Permalink Reply by Karen( Mom) on January 31, 2009 at 3:47pm

I find the hardest part of being a parent with a child who has AA is that we don't have any control over the situation. I try hard not to search her head or make a big deal over an eyelash fallen off even though I am worried sick. She has asked us a few questions in the 2 months that we have know about her AA ( she is 8). But overall she doesn't seem stressed about it. When I did find a new dime sized spot while putting her hair up I told her about it and she wanted to see it. So I got a mirror and showed her, feeling my tears about to start, I asked her what she thought about it. Her reply was, cool its different shape that the other ones! I know as she ages and AA changes this will change but for now I can't believe how addaptive she has been about it.
Karen

Permalink Reply by Melani Molina on January 31, 2009 at 4:25pm

Karen,

I can completely relate to everything you are saying. It is so hard on the parents. The kids seem to handle everything so well. Genevieve has not asked us one single question, or made on single comment since her diagnosis. We told her about AA and what causes it, and she is perfectly fine with it. We have not told her what ultimatley could happen, should things continue to progress. At this point it just doesn't seem necessary because she still has so much hair. She is also a little worrier (just like mama) so, I don't want her spending her time thinking about things like that. It sounds like your daughter is handling all this very well also. They are so strong aren't they? Genevieve currently has two large spots on the top of her head that have run together ( they still have a few strands of hair running through them.) She also has a spot on her crown that seems to be growing and a small spot on the other side of her head. When I look at her scalp, I can find little red areas all over that are about the size of a pencil eraser. Those freak me out because I don't know if that means that she will absolutely lose that hair. The eyebrow thing hit me harder than I expected, but like you I have to really try not to search her head everyday. It kind of sounds like Genevieve and your daughter are around the same stage of loss. We have also known for a little over 2 months about Genevieve's AA. I am so thankful for this site and the wonderful support I have found here. Let's keep in touch about our daughters' conditions, and I hope things start taking a positive turn for y'all!

Melani

Permalink Reply by Pam (Julia's mom) on February 1, 2009 at 9:06am

Julia has one eyebrow that is almost gone as well. It has come and gone many times over the years. I am not as concerned with that as with the hair on her head. I feel like I should be able to fix this problem for her. It is agonizing to watch, because we all feel so helpless. I believe that Julia has triggers to her hair loss. After she gets sick (virus'), and I truly believe her thyroid as well. Her thyroid antibodies are high and have been since this incredible amount of hairloss she is currently having. She is currently seeing and endocrinologist and is on meds for her thyroid. Her dermatologist has her on a topical med for her head. Prednisone has also helped her in the past with temporarily stopping the hair loss. I chose to start her on the cool laser therapy as well. This treatment I know will not hurt her, only possibly help her. I pray constantly that she gets her hair back. I pray for a cure. I know it is not life threatening, but it is life altering. Kids are faced with enough challenges today, this should not be one of them.

Permalink Reply by Michelle & Kyra on February 1, 2009 at 11:11pm

Hi Melani, My daughter Kyra lost all of her eyelashes and about half of her eyebrows before she lost all her scalp hair. What really got to me were the eyelashes. She did grow all her eyelashes back as well as lots of regrowth of her scalp hair and eyebrows. We know that she may loose it all again but I just tell myself why worry about something that can't be changed. We just try to make sure Kyra knows that she is a fantastic beautiful girl with or without hair and that she is loved. I wish you and Genevieve all the best. Michelle

Permalink Reply by Beth Breslow on February 2, 2009 at 7:27pm

Hi Melani,

Our little one was diagnosed with AA 3 weeks ago. My husband and I went away on a cruise over the weekend and just returned today. I am falling apart after seeing how much hair she's lost just in 4 days...it is so upsetting!! I was so excited to come home and see the girls after being gone and I tried so hard not to notice her hair but it's so hard....so so hard. I totally agree with your pain right now....good luck :)

Beth