Hello, and welcome to you!!! I hope you like it 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!!!

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?

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??

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...

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.

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 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 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,
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 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

Hey Maria, I see your online..Want to meet in the chat room?

Maria, at the top of the page where it gives options (ex: my page, forums, etc) there is a link that says chat...once there, is says type in name and you hit enter and get into the room. Cindy

Maria, are you feeling better about things now? Email anytime you want to chat...Tomorrow will be a better day!!! Cindy

Hi Maria, your children are beautiful. My daughter is also 4 and diagnosed with AA.. thought we could keep in touch and help eachother out through the ups and downs. Cheers. - Lori

Maria, How are things going? Maybe we can meet in the chat room one night this week..I also forgot to tell you that another mom told me about an organization that gives hat to kids who have lost their hair. Samantha not only received hats, but a build-a-bear..Here is the linkhttp://www.heavenlyhats.com..

take care,Cindy

Hey Maria, I will try to pop on later tonight around 9 when Sam is in bed...Or pick a night anytime after 8:30.I have to say that I am a bit down about things...Cindy

Maria, if I know you will pop on I will come...Sometimes I pop in and the room is empty...So, I will look for you at 9ish...I am glad you felt better last week..Cindy

Maria

Thank you for the words of encouragement that means alot, I hate that Mia has been through this as well but i am glad i am not the only one and it is nice to talk to someone who actually understands how i feel. I dont even think my husband understand how it feels to have her say such things...Lately she is stared to shy away from things she usually loves to do, I am trying to keep her into everything but she is starting to have a hard time and i dont know what to do....Any advise please let me know...Thank you Maria

Maria, how are you? Happy Alopecia Day!!!!!! Let's pick a night to chat..

Cindy

Maria, I got more information on Hair club for Men. They give kids age 6-17 yrs free hair pieces and they are taped with a heavy tape. About once a wig the tape needs to be changed and you get a new wig every 4 months. I am going to set up the consult apt. My concern initially was it being glued on so we could not do treatment, but that is not the case..I am also working with children with hair loss..They never sent me a new wig in the right size and color..I talked to them today and working on that too..We should have some good options come Aug for the new school year.

Right now, I am bit stressed. Samantha had a strong reaction to this past application and I don't know why. She must of touched and I don't know how she did. She has not worn her wig since Sat pm. She had a really bad rash and it spread to the side of her face. It looked better at bedtime and she woke up with blotchness..On Fri I am going to put it on the back of her head and see what happens. If she gets red spots on the face I will need to call the doctor next Mon..I am going to Fl for a week next Tues...Maybe we can catch up later this week..Maybe Wed night? Let me know..
Cindy

Samantha is feeling fine..She took a nice bath this afternoon since she painted herself silly...But, Sat I had a soak her head in the tub she was so uncomfortable. This happened one time before, but I know she touched because her hand had the rash...I will just put the cream on and see how it goes...Children with hair loss was quick to respond to me when I first applied online. I got the wig in a few days..I have been waiting for a replacement which has been annoying. I am going to take what I can get for free and see what works best for her. I am very excited about hair club for men. I plan to call tomorrow to see if we can get a Sat apt. Once we have the consult we will see if we want to proceed..Chat with you Wed , 9ish?

maria want to chat a few?

log into aim if you want to chat

Maria, did you hear anything?

Maria, I enjoyed our chat last night. Hope to see you there again soon. Christine

Hi Maria, I have been in bed since Sun and i am still not feeling better. I have not been online much. Glad you got the stuff in the mail..When do you find out if they will make an exception? talk to you soon..cindy

Maria, it took about a week...I am going back to bed..Let's chat next week..

Cindy

Cindy,
feel better next week sounds fine.
maria

i can barely keep my eyes open..My husband thinks I am nuts because he can't see what I see on Samantha's head. That is some very small, like 1cm porcupine hair stubble. It is in more then one place.Could this be the start or am I just seeing things AGAIN???

maria, i am still not well..long story and now I have some involved family issues in Fl and may go back once I am better..cindy

Hi Maria,

Thanks!!
I Hope you had a good day too!!!
I am having a hard time with my hands and arms and can't type too well..Doctor doing tests. We go to the derm tomorrow. I will let you know what happens. Did u get an exception fro the kids club? let me know what is up with the wig. Cindy

Hi Maria,
Did you go to the hair club today? I hope it went well and Mia is excited as Sam is to get her new hair..I am bumming a bit..All those hairs I saw on Sam's head are gone..It makes me feel like this treatment is not going to work. We will step it up starting this week. Sam has her competition tomorrow so we will not do a treatment tonight and will wait till Sat and then do the next on on Wed...I hope we will really be able to attack her immune system now. I am so glad school is almost over so I don't have to be concerned with her wearing a wig and feeling bothered by rashes after the treatment. She loves wearing the headbands and frankly is it is so much easier to throw on...I am hoping the new wig will really be like wearing her own hair as they say and she will want to keep it on in between treatments...talk to you soon..Cindy

Hi Maria, Carly had had AA for 1 1/2 years and It tool almost 1 year to lose almost all her hair on her head, She does shave down what she has ket and wears a poly cap wig she tapes on. We did try steroid Inj for a while until there was too much loss... It did give her some growth but it eventually fell out. I think her loss has stopped right now. I do give her a DHA Fish oil supplement (500 mg chewable fruit flavor) a day ,I have heard Omega 3's CAN help with autoimmune problems,,, who knows? She does have some regrowth right now we are hoping it continues.

Maria, see you online tonight..Looking forward to catching up..Cindy

Good luck with that Maria...Do you want to chat later then 9pm or meet up on Wed...I will look for you..Cindy

Maria, Have a good day and smile!!

Maria, Are you feeling better? I am a little nervous today..Samantha is having a play date after school and at another child's house and I have not let her over anyone else's house since her hair loss without me..Keep in mind I have not announced her AA to the class. I hope the mom does not ask me any questions or Sam opens up her big mouth..She has had no play dates from school that were not at my house all year. Cindy