I wanted to welcome 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

Hi Maria..I have a 6 year old in Kindergarten with Aleopica. We live in MA..How has your daughter adjusted to her AA? I would love to chat..Cindy

HI Maria,

I think it is great that our girls have adapted so well to Aleopica..I have be honest and say that I have yet to take a picture of Samantha with no hair..I refuse for fear of my own sanity...It has been a hard adjustment for me more then anyone else in my house. Sam had the most beautiful hair. She wears her wig to school and everywhere else. She takes it off at home when she feels like it..But, for the most part she enjoys keeping on till she gets ready for bed, despite requests to take it off so I can wash it after dinner..I am very private about her AA, by choice and not many people know she has AA. .I do wonder what will happen when we start seeing our neighbors outside now that spring is coming and the kids will all be out playing..I can't hide her, but I am the type that does not feel necessary to share AA with my entire community. We live in a very small town and people talk.

The important thing is that Samantha, like Savanna just go about there lives without thinking about their hair. Samantha has not shed on tear over her AA..She is currently doing a treatment called squaric acid immunotherapy. It is has good results and the doctor said she has seen full permanent remission. Samantha is now losing her lashes and other brow..It is bringing on another set of emotions for me. When she noticed her other brow going, I said yes I know, but I did not want to tell you. She responded, " mom, just worry about yourself." A few kids have noticed her lashes and commented to her, but she says it doesn't matter they still are my friends. I am not really sure what the kids at school know or the parents. I have not sent a letter home of anything. We will see what the coming months bring...

Sorry, I have rambled..Please feel free to post back..I find it comforting to talk to mom my daughters age and here what is going on ..Is Savanna in Kindergarten or 1st grade? Sam is in Kindergarten and did have hair when she started school..
bye for now..Cindy

Oh, the pictures look great..I need to do that too!

Maria

Your daughter sounds alot like mine..Samantha actually chooses to wear her wig and when we hit a point where her hair was just coming out in clumps she said she wanted to get a wig when she lost it all..I went through the process of LOL and for what they were going to charge me I could do it on my own and get it faster. So, after a lot of work, I bought her an Amy Gibson wig. I chose this wig because she can swim and sleep in it. It was important to me that she can go to camp or have swim play dates or even a sleep over and have her hair too. The thing that makes me sad about it is that it only came in one style for kids and it is totally not her cut. My daughter had long one length hair and now it is layered with bangs and shorter..It has taken me a long time to adjust, but she loves it and so does my husband. I have since applied for a wig through children with hair loss and they sent me a wig and bunch of stuff for us to get trimmed as cut..It is human hair, hers is not..The wig we got though is far from her color ( it had red highlights, she was more gold lights) and it was too big..They are sending me another one and then once we nail it down they will tell me where to go get it cut at no cost to me..Next, we will get a mold of her head for a custom vacuum wig. Right now, she tapes it on and we have never had a problem with it. We had a few issues when we first got it and the teacher was great about letting her wear a hat at gym and in class when needed. Now, we are good..I am looking forward to this other wig because she can have her long locks back..She does miss them, but she is okay with.

Have you ever tried treatment?

Just wondering where do you live? We are in MA..I am happy to meet a mom with a Kindergartener to share stories with and thoughts..

Cindy

Hi Maria, your daughter is VERY ADORABLE! I think she is amazing. She has a lot of spunk. Right now my daughter is struggling with her wig and wants nothing to do with it. So, we're trying to figure something else and right now letting her go "comando". HAHA, any suggestions about styling to get it out of her face? She hates that! It's funny how if she had her own hair, it wouldn't be a problem, but now she prefers not to have it. She was so stoked about her wig but now doesn't even take a second look at it, and even made a song about her funny new hair. Well, Take Care, and I can't wait to get to know you!

Hey Maria,
Thanks for the welcome. Madison has handeled it ok, we've had a few ups & downs over the years, but I would say she's doing pretty good. She does have a wig, but doesn't like it too much, it's utchy. But we have applied to locks of love and are waiting on the kit. With them, she'll get a vacuum wig made of real hair, so it'll be more comfortable.
Sharon

Good luck with the new wig Maria! There was some info on this treatment on the this board. The only side effect to this treatment is the itchiness and potential blisters which you don't want..The idea of the SADBE is to produce an allergic reaction which is in the form of a rash We want to wake up her hair follicles by tricking her immune system. If you don't get the rash, your body is not responding. Samantha did get blisters 10 days after the skin test and we had to wait until are arm healed. We had to take the process slow, but we are no going on our 4th consecutive week of treatment with nothing more then the rash. She does complain about 24hrs later that she is itchy in the spot, but we put some cream on it and then she never complains again. Samantha has been very tolerant of this treatment and wants to try it. My husband did not agree with me, but I told Samantha that when she feels itchy it is because the bad guys are fighting the good guys so her hair will grow. Today she woke up and said mommy I feel my hair growing..Time will tell..It takes about 3 months before we my see any regrowth. She is being treated at Boston Children's Hospital which is the best place I can get her treatment and the doctor is excellent and calls for weekly updates. We will be seeing her in another month. Cindy

Hi Maria! I saw that you applied to locks of love for your daughter. I just wanted to let you know there is also an organization called "Children with hair Loss" They are an amazing company. If your child is under the age of 18 they will give you hair without a doubt, at no cost to you. I work for a hair replacement clinic here in Maine and they have referred several young girls to us. We donate our time to customize the hair systems for them and style the hair. They are a great company and do such amazing things for any child in need of hair. All the hair that is donated to them is donated to children, none of the hair is sold. I just thought I'd mention it incase your were interested! The website is http://www.childrenwithhairloss.us/ Check it out! Maria is a beautiful girl I wish you both the best of luck :)

I agree! Children with Hair Loss has been wonderful to our family.

I wanted to tell you how much I enjoyed looking at the photos of your little girl. I love the one of her in her tutu, in front of the fireplace. So sweet and sassy!

Maria, Samantha got a wig from Children with Hair loss and they not only sent her wig, but a hair band with hats and bandanna and hair supplies. That is just the temp with..They will then have you get a mold for a custom wig. The wig they sent Samantha was way off color, but the hair band was a good match.I am waiting for them to resend me another one. Unlike locks of love they don't ask for any info. LOL was going to charge me the same as if I got a wig with my insurance deductible. Cindy

Katya lost her hair in about 6 months. I think the important thing for her was to immediately have hats and wigs so that she was not embarrassed in public. All her friends at school know she wears a wig and it never comes up. She does go to a small private school so that helped a lot. She also has custom made wigs so that she rarely has to tape and we are working on a vacuum wig for her. Honestly, we rarely talk about the alopecia anymore life just goes on as normal. This has been important for my daughter. We did take her to a psychologist about 5 months into the start of this. I was told by the psychologist that Katya was mostly concerned about other pre-teen issues and the alopecia was far in the back of her mind. The doctor felt that Katya was not holding anything in, she was truly unconcerned. I pray that it stays this way, but as she gets older who knows what will happen. I hope that maybe it will go away, at lease through high school. But this condition is persistent so who knows. Your daughter is really cute and it sounds like she is involved with friends and activities. I think that is very important to get through lifes difficulties. Vicktoria

Hi Maria! It was so nice to hear from you this morning!! Of course Savanna is beautiful. You know I sometimes find Samantha saying odd things and I will ask her if she really feels that way or what does she mean and she usually does not mean what she says or know what she said. Samantha did hit a point when all the hair came out and she wanted to know why her hair fell out. So, we talked about it and she was cool with it. I tell her we are doing this treatment because it will get rid of the bad guys that are keeping her hair from growing long.She has been very tolerate of the treatment and really has not complained.

When Samantha still had hair we were playing one day after a bath and I said Samantha ":what will we do if your hair does not come back." She looked at me and as she laughed she said "Mommy I can wear a wig." Samantha thinks wearing a wig is cool and seeing Miley Cryus turn into Hannah Montana has helped mold that attitude. As much as I cry inside because I miss her hair, I tell her at least you wont have a bad hair day and you can have any color and hair style you want any day of the week when you are older. ( I bite my tongue inside).

LOL takes forever..I am still waiting for the right wig from children with hair loss. If I don' get it soon I am going to call again. They were waiting to get some in when I last called. They sent us a really off color for Sam's complexion. In the meantime, she has a wig she likes to wear. I am not sure she will wear this one, but at least I can get the free mold for a new wig for school if I need to. If don't like the wig, I will just buy her a new one for school that will be comfy for her. Samantha has been talking about wanting her long hair again so I hope this will work.

We just had our 6th treatment and it is too early to see regrowth. The doctor has taken it slow. We do small areas so she said the effects of the treatment will be slower. She did tell me Friday that we can gradually increase the area size. My doctor calls frequently to check up on Samantha and will see her next month. I am trying to stay hopeful, but it has been hard for me lately..I am kinda down in the dumps myself. But, the important thing is that Samantha is not. She goes on living her life like she should be...

Let me know how you make out with the wigs and just keep putting a smile on your face for Savanna!!!!..
Cindy

Hi Maria,
How are u? I know how you are feeling about the comments or children sometimes make, because in the begining my daughter always said she looked like a boy with no hair and pretty girls have long hair. It helped to show her models and famous people with short hair or no hair..but it doesnt stop her from having a bad day..last week she cried and asked me why was this happening to her again..you see she lost over 90% of her hair, most of it grew back, but she is losing it once again...The only thing we can do is stay strong in front of them..
Good luck
MAria

Wow, Maria. Thanks for the comments about my Della. I know how beautiful she is, but it's always nice to hear. HA HA. Well, I think you handled it better than I did. Recently Della did the same thing to me. She was crying and furious about how she didn't have hair, and how her sister did and could have braids and what not. I think it stemmed mostly from her wig because it was so different from what her hair was like. I'm sorry you had to deal with this, I know I would prefer to not deal with it.
We got her wig from Children with Hair Loss, and she hated it at first. It took a lot of washing to get it right, and now she wears it mroe often. She doesn't wear it all the time just yet, but she does wear it enough that we are making the donators hair go to good use. She gets to decide if she wants to wear it or not, and I think that was a big step for her, to make the decision based on how she feels each day.
Well good luck to you, and I hope things are well. Let me know what happens, and keep me updated!

Hi Maria,
I'm sorry that I really cant give u advice on what to do when our children feel that way..I am lost when my daughter starts acting and feeling that why..the only thing I try and explain is that she is healthy she can run around and play hairlosss can not stop that..I guess u can just let her have her minute..Good luck let me know how it goes..
maria

Hello Maria and welcome to the group!! I have to say I love your page!! How are you? I hoep all is well! feel frre to ask me any questions you might have. I have had Alopecia since I was 17 months old and AU since middle school.

Hi Maria!
thanks for the input. Your daughter is beautiful as well. Up until now we have felt a wig wasn't necessary. Some from hope that it will come back soon and also from the feeling that there is nothing wrong with her and I don't want her to feel she needs to hide herself for others. I kind of just want to know what is out there in case we should go that route. She likes her hats and doesn't seem to mind just yet so we will probably hold off for now.
P.S. I love - Not read to make nice, Lynn

no, we dont treat it, we have learned to embrace it! he went universalis at about 2! i have taught colby that bein bald is beautiful!!!!! we are all different! we have bad days but colbys condition has made him a better person!

Maria, how is Savanna doing? Is she in better spirits these days? I wanted to tell you that when I return from my vacation I am taking Sam to the Hair Club for Men. They have a kids club an will provide free hair pieces to kids age 6-17. The hair sounds wonderful and Samantha is real excited to go for a consult when we get back from our vacation. You have to call the corporate office and speak to JOJO if you want to get info. The number is on there website....take care, Cindy

Hi Maria, I just wanted to write you a little note to say how pretty your daughter is. I seen you left my cousin Monique, the mother of Hayden, a comment about your decision of letting your daughter decide on when and if she wants treatment. I think that is a great decision. At first when Hayden got alopecia all I could think of is what we could do for him. After reading your comment to Monique I believe you are right there is no cure or there wouldn't be kids or adults going around without hair, of course unless they chose to..so why should we put our kids through unnecessary treatment..let them get to the age where they can say "yes or no to trying treatment, wigs, hats or whatever it may be...thanks for your positive comments to Monique, I know there are times where she questions herself as to what she should or shouldn't be doing..Hayden is a wonderful child and I believe he will be OK..I will support Monique and him through the choices they decide to make..Thanks Sherry