Hi Maria..Samantha is wearing an Amy Gibson Wig..She absolutely loves it and never complains about wearing it..She usually takes it off when she feels overheated from running around, but at that point she is in the house. I don't let her run around without her head covered. Anyway, I chose this wig because it is light weight and it is made so she can swim in a pool and sleep in it. The hair is called cyberhair. It has to be taped on and it has never come off. It did take a few visits to get the cut right. My only real qualm with this wig is that it only came in one child style and if you look at the pictures of Sam you will know what her hair looked like and which is her wig. If you go to www.amygibson.com you can see if there is a dealer near you. If not, we went to Vernon CT and we go periodically to get it checked out. Karen from Australia actually got the same wig from my guy. He is wonderful.

I saw your response about the vitamin.I don't know what to do..Sam is undergoing medical treatment and I don't want it to not work because of vitamins..Cindy

Hi Maria,
At the moment, Amber's shedding has stopped and she is getting regrowth. She wears a scarf to kindy now but I am hoping that maybe in about June...she can go to school without it. She has a alot of vellous hair now and at the back of her head everything is mostly filled in.

At the moment, I am just using calosol and it seems to be working for her. Alot of people have debated on this product but since I have started using it, she has been getting a significant amount of regrowth so now I am just too afraid to stop.

Will keep you updated on her progress and please let me know on Mia's progress as well.

have a happy easter

Karen

hi cindy,
my daughter did have a good amount of regrowth with the oral prednisone, but within 2 months of stoppping she started shedding again....She started prek in sept. I sent her to school everyday with a bandanna on her head because she only had a few hairs left in the front and with the bandanna you could not see she had lost over 90% of her hair. I informed only the teacher. One day when I was talking to one of the mothers she asked if Mia was had no hair. I explained. She stated my daughter told her daughter that she had no hair under the bandanna..she wore the bandanna because it made her parents upset(sad) to see her with no hair..That broke my heart I thought I was protecting her from the kids...But she was worried about us...good luck with your daughter treatment keep me posted on the results....

Hi Maria

Samantha just started squaric acid immunotherapy (SADBE). Basically, we are producing an allergic reaction that will hopefully turn her hair follicle back on by confusing her immune system. Samantha most recently lost almost all her lashes and her other eyebrow..It will take about 3 months before we may note any regrowth. It is so hard to watch this happen to her. There is a good success rate with this treatment. Does your daughter have regrowth? Samantha has been wearing a wig since December and she loves it. Samantha has had no social issues at school. I consider myself to be private about her AA as you read. I really don't know what my daughter tells her friends at school, but I think most know she has no hair, but don't understand why. We are lucky that her teacher and staff have been supportive to her. As the mom, I have the bad days and cry for both of us. Samantha has yet to shed a tear, but has started to ask questions. She seems to understand it fairly well..

Hey, on another note, I live in MA, but I am also from NY, Queens area..I went to grad school and never looked back, but make frequent trips to NY..Cindy

Hi Maria, My name is Cindy and I have a 6 year old daughter with AA. She developed AA just before her 5th birthday, but we did not know it at the time...Are you trying any treatments at the moment? My daughter recently started a new treatment...See you around the boards..And Mia is absolutely beautiful!! Cindy

Hi Mia,

My name is Karen and I am from Melbourne, Australia. I can honestly say that I am in exactly your same position. My daughter Amber is also four years old and started loosing her hair at 3. She also was on the steroids which worked for her about 2 months after we stopped the meds, she started to shed again. She is getting regrowth again now and fingers cross once again that it stays. It is a rollercoaster.

My daughter had small spots from dec to june 07. then in july the shedding became more like clumps of hair falling out..that left her with over 90% hair loss..I did not want to give her meds but finally did...the derm put her on oral steroids...within 3 months most of her hair grew back except for 2 quarter size pieces in the back of her head and 1 on the side...unfortuantely after being off meds for 2 months she is starting to shed again the back spots have now become one big palm size spot. I hope that it doesn't get worse for her sake..shes only 4 but she does get sad...good luck...

thanks so much the first week was VERY hard and things are getting better. I do TRY to stay very strong in frount of her. I found the CAP program as well the first time I went online to look it up, it had a lot of info, I still kinda of feel like it cant be true ya know lol so that is hard but dealing ya know one day at a time. she had a lot of hair loss the first week all over but we are already seeing hair growth did this happen with you bu chance??

hey, i see your also in NY i am in LI do u know of any support groups for parents or n e thing like that out here?

I joined the Registry as soon as I heard about it and made my mom and all my brothers and sisters join it too. As each of my nieces and nephew have been born, I have made their parents put them on the registry too. I was able to get my dermatologist here in Nashville to draw the blood and do the examination; now the Registry allows for private MDs to do the collections and you don't have to go to one of the main test sites anymore! I think that we really need to get the word out to get more people on the Registry; the more people we have the more information we can collect!!!