Comment by Tuesday on June 29, 2010 at 10:36pm

I second asking your daughter what she wants to do. I have AU and started, after my first few bald spots were discovered on Prednisone shots. Honestly - I was more afraid of what the steroids would do to my body than what the alopecia was doing my hair. So after experiencing hair loss but only fuzzy regrowth, I stopped the prednisone. It's not easy to watch a child suffer with this. I have two little boys and I hope they don't get on alopecia. On the other hand I have a good friend with a 4 year old who has just been diagnosed with acute leukemia and losing his lovely hair is the least of her worries. You can hope for the best but be prepared for the hair not regrowing or if it does regrow, it could fall out off and on periodically. Or not. It's an unknown. I think you should ask your daughter what she wants and seriously weigh the effects of the steroids on your daughter. Good luck!

Comment by Maritza Stern on June 30, 2010 at 1:03am

Hi Rhonda My heart goes out to Kate during this transition period. My son is also age 7 with AU, but he has had it since age 6 months and well, he is used to it. Our family motto is "Pray for health, not for hair". In other words, it could be soooooo much worse. If you really keep thinking that way and explain to your daughter all the horrible things in the world that other children have, ie. heart disease, cancer, cystic fibrosis, incurable tumors, etc., you will start to realize that you are fortunate. Could you show your daughter Kate an article that Thomas just came out in yesterday. It's online at mycentraljersey.com and if you click on the health tab you will see his picture and story. Perhaps it will inspire her a little bit. He doesn't have time to even think about his alopecia. He takes his cap off everywhere we go hoping that someone will notice and ask. He is very aware of his surroundings and wants to raise awareness in his own little way. I could not be more proud to be his mom and the confidence he exudes is overwhelming. I wish Kate could meet him. He would make her feel so incredibly good about herself. If there is any words we could share with you and Kate to help please let us know. Perhaps Thomas and Kate can be e-mail penpals and he can help her through some of her feelings.

Hang in there, it really does get better......eventually.
Maritza Stern

Comment by Ann Cutts on June 30, 2010 at 2:20pm

oh, I wish we could meet! my dtr is 5 and had more hair than any adult I know, curly ringlets,, but not anymore. Sorry to say, but like all others I would take her off the steroids, as a nurse, that is just not an option. It's been almost a year and I still am very sad sometimes too. Let her start being comfortable as who she is, ie; wearing hats,scarves or nothing, later on she will probably want to start getting used to a wig, but if not, then that's ok. We just got back today from my dtr getting her "hair cut". I've spent since last aug trying to get her a curly hair wig...long story but the only thing we got was one that came permed and in such bad quality,..well now she loves her new "i Carly" hair. It did take her some getting used to-the wig. Sometimes she wears it, sometimes not and some days she goes to daycare with it on ,then takes it off-it's totally her choice. Don't feel bad about feeling bad for her. It didn't take me long to figure out exactly who I could talk to, because the response is always the same, "well at least she doesn't have cancer, or at least she's not sick etc". Yes of course I would choose health for my child, but we have a right to greive for what we have lost because of course my dtr is just as beautiful to me, but when strangers see her they see something else and they used to swoon over her, and my dtr has learned this. So we do have a right to be sad over what is lost. But it is also true that we need to grow from this experience, which I am doing and it's easier said that done. I will be thinking of you.

Comment by Rhonda Pillard on June 30, 2010 at 8:18pm

Hello everyone!! Thanks for all the feedback. I guess I did not tell the whole story...Kate and her brother are adopted. I have lost 9 babies and had to have a Hysterectomy 1 year before we foster/adopted our kids. We have no medical history and being a nurse, I had to get my son his newborn shots when he was 4. Kate had hers. We found out that Kate was deaf in her left ear almost 1 year after we had gotten the 2. She also had a fungal infection that looked like little skin tags under her arms and down both her sides.

Yes, I am grateful that she does not have something worse. We are so thankful to have these 2 children. I have NO interest in contacting any birth family about this or other history. The kids have gone through enough with all the blood work and other testing that we needed to know about. I feel bad that some people might think I am shallow about Kate's hair loss. I am not. I am worried. What will come next? So again thanks everyone. I am new to this and kate does not know what she wants to do. I wish she was more mature and would tell me how she feels. I have asked her and she really is pretty wishy-washy on everything. She first wanted a wig and then when it was not a different color than her natural hair, she did not want to wear it. She is 7 and wants to be blond. She did have the thickest brown hair I had ever seen. She never goes anywhere without a hat. She loves them. Certain situations, we need her to wear a wig. A funeral we just went to, a wedding and anyother special event. People in the Supermarket, who I do not know ask if she has Cancer. I just reply "Thank God no." tell them to have a good day and walk off. Ann, thank you for your comment! Everyone thank you. We are trying to handle this, but I do need advice. And some support. I give all I have to Kate. Mom needs some too!!

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