Helen, I read somewhere you were looking for head coverings..My daughter wears a headband with hair sewn into when she does not wear her wig. She loves them. www.hatswithhair.com.

Lynn:

The hair piece with the velcro is from Hat & Hair. Their website is www.hatandhair.com. We purchased the "Jodie" stye for Emma and it is a nice length for her. As I mentioned in my earlier post we have found several cute hats at Claire's and even Children's Place has several cute hats out this spring. I just sew the velcro into the hats and it works perfectly. Thank you for your kind words. We are doing ok right now. Emma has really embraced this and is accepting it like a trooper. Our next challenge is to find some kind of wig that can be put into somewhat of a bun for an upcoming ballet recital. She really is not fond of wearing a full wig but wants to look like the other girls. So I don't want to spend a ton if she is not going to wear it much. If you have any suggestions for a piece that might work please let me know. I'm planning on posting something to the whole group about it sometime soon. BTW... your daughter is a cutie!!

Lynn,
Thanks so much for contacting me. Helen is absolutely adorable! How wonderful that she is experiencing regrowth! I really hope that it continues for her. We have been dealing with this for a relativley short time compared to you guys. Genevieve was diagnosed about a month ago, and about a month prior is when I noticed her first bald spot. That spot has definitely grown and she now has about 4 or 5 others along with it. She is also starting to lose a portion on her eyebrow. I guess what is killing me is the not knowing. Is this going to be it or will she lose everything? Sometimes it seems like it is happening so fast, then other times it is agonizingly slow. How was it for you when Helen started losing? I would love to share experiences and stories with you sometime. You said you live localy? We are in Pearland. Perhaps we can meet sometime to talk about this crazy alopecia thing!
Melani

Hi,

I am stopping by to see how Helen's regrowth is going. Are you still using the Rogaine? I have just started Amber on rogaine as well wanted to get your advice as to how you found the product.

Thanks

Karen

hi therem your daughter is soooooo gorgeous!!! hope you are all ok.xx

Thanks for the tips. I have actually bought her a wig, but she doesn't really like it. So, I guess I will just wait to see and keep it on hand for the day she wants HAIR. There is a picture on our site with her and wig.

Thanks again.

HI! I really wish the kids were closer,also. I don't know if the sterols make a difference, but this is the longest time for regrowth since he lost his hiar at 11 months. He started in January and is still "growing" strong-we just take it one day at a time

Hi Helen's Mom!

I was just wondering if Helen has ever asked for hair? Leah doesn't really understand about the hair loss thing yet, but has asked for a haircut and some hair right here (top of head).

HAHA I'm Miranda. Della is my daughter with alopecia, Angel is her twin, and Aaliyah is my 8 month old.

Hi Helen.

Well, we talked to the research committee today. They registered Angel, Della's twin. They want us to participate. They are going to send us a package instead of us going out to the facilities. We are going to be traveling here a lot phoenix for Della to get treatment so I don't think that will be possible right now. The lady was so nice, and excited. I hope they can find out something. She also said they were writing a research paper about twins where only one is effected. I wonder what they will find out?

Your daughter is a beautiful little girl. I see that you have talked with Monique. She is my cousin and Hayden is her son, as you know. I would do anything for the both of them. I am really interested in learning all I can about alopecia, as I am around Hayden, Hayley and Monique all the time. They mean the world to me..good luck with the treatments...and keep us filled in on what is going on...

please do..i am very interested..we are interested in following your suggestions so far. thank you.

Yep!! But we still have a few months left to wait. We are still waiting on the cap that they made from her head mold to come in. We have to make sure that it fits her head good. Then, if it does fit like it should, it will be about 4 months for the actual wig to come in. But they are sending her a synthetic wig to wear till she gets her vacuum wig. She is very excited!! She has a synthetic wig already that we bought a few years back, and she has probably worn it a handful of times out in public. But she likes to wear it at home. I think that when she sees how this wig won't itch or bother her like her other one did, she might wear it out to school. She is so used to not wearing anything, it might take a while to get used to wearing one.

thankyou so much for the compliment, i am an esthetician, its all about skincare, as you know alopecia comes with alot of skin conditions!!!!!!

Hey Lynn.
We are actually in Louisiana, but only about 2.5 hours from Houston. It took me a while to get over Madison losing her hair. But I guess just seeing how much she had accepted it made me realize that her hair wan't what important. I still have days where i am a little down. I wonder what she would look like with her hair & eyebrows & lashes......She has been accepted in Locks of Love and we had to shave the few little hairs she did have in the back. And within a few days they grew back!!!! And more hairs are coming in!!! Not a lot, but it's something. I noticed the other day that her eyebrows are getting little hairs. They are white anymore, they have color...so I wonder if these will stay??? Your little Helen is adorable!!!
Sharon

Thanks for the very positive and encouraging feedback. I'm so glad that you (and Helen!) are enjoying being an integral part of Alopecia World. ;-)

i am so happy to be a part of this community that is in this site!! it makes me feel a sense of relief. just knowing that i can hear other peoples experiences makes such a difference. i am really eager to try something new. i mean, i dont know if i am doing the right thing by doing nothing, or if i should start looking into other options. i have had lupus for alot of years and i feel like i have been in the hospital my whole life. i just dont want it to be a part of haydens life. then again maybe i am doing some kind of disservice to him. his dad and i have alot to talk about. we do eant to try something. i just didnt know where to start. by coming here i am getting feedback that is so great and helpful. i took steroid for alot of years and had side affects that were more then i bargained for, i just dont want it to ever be the same with hayden. thank you...i appreciate our conversations between eachother!!

actually...we went to san diego childrens hospital. the only options i was given was to do the streroid cream (which i did) or startt him on shots. i was never aware of him not having to get shots in his head. thats the only place i thought they did it. so hearing you say that kind of shocks me. when i said i wasnt interested in that, they told me i didnt need to come back unless i changed my mind. when i took him he had about maybe 15-20% of his hair still. now i think maybe i should just go somewhere else? so did you do the rogaine first without shots, or is that something you do together? i have a daughter also, so the thing about his immune system being weaker alarms me. it seems like if someones kid is sick, at leats one of thm will get it, and both will be sick. i just get nervous on that part. thank you for sharing so much. it is appreciated!

I wanted to welcome you to Alopecia World. I can honestly say that we are a great community here and I hope you enjoy the time you spend with us.

Cheryl
co-founder