Replies to This Discussion

Permalink Reply by Mommy on April 23, 2008 at 9:19pm

Welcome Lisa. I am sorry to hear Luke has the condition but glad you are determined to find out all you can about it. I don't know about everyone else, but I definitely have the same struggle. We don't want our children to face any hardships in life ( even if it is not a physical illness) it is still something distressing and something that is noticeably different which can open up socially stressful situations for them in the future. Yes we are all grateful and relieved it is not something worse. As a friend once told me, " your hurt thumb is your hurt thumb". I always took this to mean you can always find cases where people are doing worse than you and then question your right to feel bad or sad about something but that you shouldn't. You are entitled to feel however you feel. For myself I have had hope, but as it has been a year I start to think there may come a point where I will have to accept it may be more permanent than I want and more sadness creeps in. Other days I think, screw it, we will all be fine and there is no need to feel down in the dumps about it. Either way, I know my daughter is wonderful, beautiful and more than her hair. I will be positive for her and us and we will all learn to live as happily as possible with whatever may come to be. As for the actual condition-it seems there are no great treatments and each outcome varies with the individual. Just my conclusion from doctors, reading etc. and from recently speaking to the head doctor of the MD Anderson branch of the National Alopecia Registry. It is predictably unpredictable and only time will tell. ( Very frustrating indeed!). I don't know if what I said will help but I hope it has. Feel free to ask any questions or share your thoughts.

Permalink Reply by Lisa on April 24, 2008 at 10:02am

Thank you so much for your reply. It really made me feel good to know that someone understands why I can be sad and not feel bad for feeling that way. I'm mean we all know that there are worse things out there...much much worse and for that I am truly grateful that the condition at hand is that one that we were dealt. I too have hope, but also am realistic in thinking that this could be a permanent condition. I will have many questions and I do have many questions. Tons, actually LOL. Thank you again for your wonderful response. :) Lisa

Permalink Reply by KIM - Jessica's Mom on April 26, 2008 at 6:33pm

Hey Lisa, It is my opinion that God doesn't give us more than we can handle. He must think our Alopecia Kids are made of pretty strong stuff to handle this added stress. My advise about how to handle this is to "never let'em see you sweat." Kids take huge ques from mom and dad. Don't make him hide it. Present him with the option of hats/wigs/bandanas but make it okay to go au natural too. My Jessica is almost 8. All of her friends know about her AA. She wears hats/scarves to school but as soon as she gets home and is playing in the neighborhood or at a friend's house she just takes them all off and gets comfy. As her mom I'd like her to look as cute as possible 24/7 but just as I learned that her big brother was mostly going to be covered in dirt until he discovered girls, I've conceeded that she's just as beautiful with only half a head of hair. She's very confident and amazing.

Permalink Reply by Lisa on April 28, 2008 at 8:57am

You're totally right. Kids do pick up what they see from their parents so our plan is to be low key about this and not over focus on his AA. Luke is not his disease. We plan on talking to him openly and honestly should he have questions. I so glad to hear that your daughter is very confident because I have a daughter the same age and I know that this is when they really need to develop that confidence. So many pressures. Thank you for your reply and I'm looking forward to getting to know you and Jessica. :)

Permalink Reply by Miranda on April 26, 2008 at 11:15pm

Hi and Welcome Lisa! i am glad you found this place. I have said over and over how much better I am handling this disease by expressing myself to others that are in the same position. I think this place has been terrific, and makes you feel like you are not alone. It seems lie every time a question comes up, there always seems to be someone that has handled it before me and his some great words of wisdom and inspiration! My Della just turned 5 on March 31st, so our kids are really close in age!

Permalink Reply by Lisa on April 28, 2008 at 9:08am

Hi there, thank you so much for your reply. It certainly does make me feel better speaking about this to others who know what I'm going through. Well, I guess that last sentence makes me feel weird because I'm not going through this disease although I wish it was me and not little Luke. I would give anything for that to be the case. Della is gorgeous! So she is going to start Kindy this fall? Luke has a July b-day so we are waiting another year. He's not ready for such a huge transition yet. Looking forward to getting to know you and Della. :)

Permalink Reply by Michelle (mom of Sam) on May 4, 2008 at 11:24pm

Hi Lisa,
I am new as well. Our Sam was diagnosed by his pediatrician 2 weeks ago. We are waiting to see the pediatric derm at Johns Hopkins. We had noticed Sam's bald spot shortly after he had Chicken Pox. As long as his hair is down in the back, it covers the spot. But it doesn't always stay down. Right now, the only persons it affects are his older siblings and my husband and I. I am more concerned about how other people will react to him in the future as he gets older. I am glad that Cheryl invited me to this group as I need the comfort and support of other parents of children going through this. It's nice to meet you. Michelle