Hi, it's nice to meet you and welcome to alpecia world. Ray's started when he was 3. I tried the creams and stuff, but for Ray nothing worked. I always tell Ray theres a reason for it and love he just the way he is. Since I've been on this side, it's helped Ray a whole lot. Im hoping to take him to the CAP meeting in Aug. So he can be around other kids with alpecia. Great to meet you and Hayden.

Hi Monique! Hayden is adorable! I wouldn't do a thing as far as treatments go. We tried a steroid cream on Ella's head when she was first diagnosed at 7 months and all it did was thin the skin on her scalp. I probably only used the cream for a week and decided that was enough, it wasn't worth it to me. There is no cure for alopecia, and until there is I feel there is no point subjecting a child to unnecessary treatments. Yeah, some kids have regrowth, but it can all fall out again too. I think that would be more devastating. As I mentioned in my bio, I truly feel how a parent reacts will determine how the child will come through all this. I have personally decided that there is nothing wrong with Ella, so what's there to treat. She is a very happy kindergartener and she knows she looks different, but she also knows that she's beautiful. She never covers her head up, because she has grown up knowing there is nothing to hide.
I'm not sure where you are located, but you may want to look into Children's Alopecia Project. They are a fantastic group focused just on kids with alopecia. They will be having their first conference this August in Philadelphia and we will definitely be attending. Ella really could care less about it, but I feel it's good for her to see other kids that look like her just to know that she's not the only one. Eventually, as she gets older, I'm sure she'll want support from kids her age. Ok, enough rambling, I hope this helps some. Good luck and I hope to meet some day.

Hi Monique! Connor was having steady regrowth but started to slowly lose starting in July- He still has about 50% left. We only do Moducare chewable -it is a plant supplement(no side effects) and sometimes the Phyto brand serum-also natural. He also has a bit of white in the balding areas-I am hoping some will regrow before more falls out-but really, who knows? So unpredictable this alopecia!

I hope you don't think I am butting in but, I saw your discussion that you posted so I copied and pasted??? that doesn't sound right..hahah...and posted it as a blog...so check out the blogs to see if any one responds...

Hi Monique,

I haven't written in a while and just wanted to touch bases. We took Helen for the registry. She donated her blood to the study. (Very brave!). The head doctor said our pediatric dermatologist was good and thought her suggested treatments were fine. This was a relief to hear- doctors vary so much it is hard to know if you have a good one. We went back for her third and last steroid shot a couple weeks ago. Now we are suppose to continue with daily sun exposure and rogaine (2x day). We go back in August for them to monitor her progress. She has had some regrowth of white patches and peach fuzz . Some parts are still bare. It is a slow process. Did you decide to try anything else with Hayden?

Hi Monique,
I think my book can help you. I have a chapter on "Doctors and Drugs" that explain all the different treatments and what you can expect. There's also a chapter about kids with alopecia. The book is called, "If Your Hair Falls Out, Keep Dancing!" and you can get it by clicking the web site on my page. Good luck and take care of the wonderful kiddies...
LeslieAnn

HI! Connor's hair is still coming in- I keep watching for it to start falling out-a little paranoid,but I guess I just don't want to get my hopes up-I'll post a new pic soon-We are using Phyto brand hair serum($50 at Sephora) and a chewable plant sterol called Moducare-bought from Vitacost.com-not sure if it is helping but it is natural with o side effects,and he has about 60% of his head covered with hair-talk to you soon

Monique...

I would really like it if Hayden was part of my project...a Mission for Education and UNDERSTANDING!

Please Read about it under my forumn on my page. If you are interested, email me at bbibby_org@yahoo.com

www.bbibby.org

Take Care

Hi Monique,
Thanks for adding me as a friend. Hayden is absolutely beautiful. Your attitude towards his AA is going to be the biggest factor in how he reacts to it growing up. You asked for what advice you would do if it were us in your position. As a mother, I hope and pray that my children do not get AA. But, if they do, I will definitely NOT be using traditional method treatments. Having gone through the use of oral prednisone as well as cortizone shots and steroid cream on the scalp as a young teen for many years...I feel very strongly that these have all been at the root of the major health and emotional problems that I have been dealing with for the past 12 years. If I could do it over, I would have ran in the other direction. I struggle every day with health issues not related to AA but very likely caused by the treatments I underwent. I would suggest trying anything that has no dangerous side effects and could possibly help him. If he has allergies, look into NAET (www.naet.com) to learn about eliminating them and helping his immune system become stronger. Help him to eat right, exercise, and do relaxation exercises. The only thing that has helped my hair to regrow in the past has seemed to be working on my overall health in a very proactive way. That is, of course, just my opinion and how I will deal with things if by any chance AA shows up in one of my children.
Shannon