i completly agree, i will leave it up to colby but he is secure! from day one we never hid it! it was something we dealt with it, trust me, a part of me died the day we had to shave his head!but if it comes back we will welcome it, until then we are bald,lol!

At the moment they are not treating it, he was diagnosed maybe 8-10 months ago, and we are still learning. Some of the treatments sound scary. The Dr's had told her about steroid shots in his head??? That is one of the reasons we are so happy to have found this site. We can read what other parents are doing or not doing and how it affects their children. All in all Hayden is doing pretty good. I know Monique has told me of episodes where he has cried and wants to know why his lil' sister has hair or eyebrows and he doesn't. When that happens, of course we are all crazy with emotions, wondering on how to explain alopecia to a child. I am sure it is much harder on Monique, as his mother, than the rest of us. She is a teriffic mom, and I am sure she will do what she thinks is best for Hayden and her daughter Hayley. I am here in their corner, and I am also looking forward to learning about alopecia. I also have a disease that involves the immune system, which is psoriasis. It leaves scaly patches of skin on about 70% of my body. Here I am an adult, and from what I have read on this site some of the kids and young adults deal with their alopecia alot better than I deal with my psoriasis..haha..thanks for listening and we are always open to new ideas, suggestions, treatments, and comments.

What a pretty girl. Love her hat with the dance costume. For some reason I was alright with the AA until my Jessica had a dance recital and couldn't look just like all of the other girls. Just another lesson for this mom - The best thing a girl can be is herself not just another "stepford-like" clone.

I'm curious about the LocksofLove wigs. I've actually had tons of neighbors donate hair to locks of love. I wonder how the application process works. We have some insurance that will cover a wig but they will only pay up to $75 every two years. Does that disqualify us for a donated wig? And do you know if the wig your child gets will be human hair or synthetic? It's nice to talk to someone who is having similar experiences. And my Jessi loves to see pics of other Alopecia Kids. Thanks KIM

Maria, I was reading a note you wrote on someone elses page..Did I email you about the Kids hair club? They give free custom human hair wigs and it takes about 6-8 weeks to get. visit www.hairclub.com to see if there is a location near you. We go SAt for her first consult. We are still doing the treatments and I am feeling like something is gonna happen soon..What else is new? Cindy

Maria, that is awesome news!!!!! I am hoping the treatments will kick in soon for Sam, but it has only been 8 weeks which is not long, but seems like an eternity. We have been on a two week break, but back to schedule today after school... did you call the corporate number for kids club? I know I had to leave a message or two before they called back, but she will..

Good luck! Cindy

Thank You so much for your help! I'm going to follow up on your suggestions today. Jessica just lost another big patch on the side of her head. My father had old man bald.....bald on top, hair on the sides. He passed away about the time Jessica started loosing and we joke that he took her hair with him to heaven. I'll let you know about how the wig shopping goes.

Maria, Samantha had her consult apt today and she had a great time. We were in/out in an hour. I brought pics of her with her own hair that they used to match up a great color close to hers. They made a mold with sirain wrap and tape. It was quick and painless. Let me know if you decide to give it a whirl..Cindy

Good luck Maria..I know JOJO will call you back..I always had to leave a message to get a response...Pleases let me know how it goes..I told them i really wanted it by June 19th and they are going to try. My husband has a big event planned for his clients and I would love for Sam to have her new hair...The staff could not do enough for her during our time there..Let me know what happens..cindy

Hi Maria, that is wonderful news about Savanna. I may even have our final product before your apt. Just remember to bring pictures of Savannah when she had hair so they can match a color.

That is wonderful news about the regrowth. How long has been since she started regrowing her lashes and brows? I can't say for sure Sam is having regrowth because she has no peach fuzz, but parts of me feel I see something starting to happen on her scalp. Call it mothers intuition. Heck, we are doing these treatments and i should be bound to see some results soon. What does the regrowth on the brows and lashes look like? Did she get dark stumble on her brows coming in? Just wondering what to look for. If my memory serves me correct you are not doing anything at the moment...ttyl.Cindy

Maria, it is all wonderful news..I thought you said once you were giving Savannah the singular.I know what you mean about feeling all alone..I kept taking Samantha to doctors and nothing was working and they kept telling me her hair will grow back and she is not going to be a worse case scenario. HTHA..1 year later we have no hair anywhere..I am glad that my derm who we took her to first was honest and said she need more involved treatment then he could give her and made a referral to children's hospital in Boston. I keep telling my husband that I want to call and let him know what is going on, but I don't really have any good news to share yet. My derm was awesome..He took me the day I called and was always accommodating to my ups and downs and we see Sam at the drop of a hat.

We go to the doctor on Tues and I let you know what they say..I think it is time to get more aggressive with either 2 apps a week or cutting the dose for bigger area...

Cindy

Maria, where in TN are you? We may be takinga trip there this summer for a long weekend. jeff has a client to see and wants to mak a short family trip out of it..I am not sure where she lives, but we are looking for kids things to do and if you local maybe we can meet up...Cindy

Maria, I'm in the chat? feel like chatting?

Maria
HAPPY MOTHERS DAY !
Maria

Maria, Sorry to hear that Savannah felt sad at her dance recital about no hair. I hope she continues to have regrowth. I hope she loves the wig from the club. I am looking forward to getting Sam's. Have to for now..Cindy

Maria, how is the regrowth going?

Maria, glad to hear that Savanna continues to show some regrowth in certain areas..Stay positive and we can only hope her hair is growing too, but you can't see it. Sounds like the lashes grew in fast.
We started on two weekly applications this week. We did the second one tonight and I felt bad that Sam was so itchy, but she wants to deal with it to get her hair back..I thought a few weeks ago she had some straggles of hair, but now they are gone which has me bumming, but I have to have faith that this will work..

Cindy

Maria, how is Savanna's regrowth going? Did you got the hair club yet?Cindy

Maria, we are still waiting for her new wig from the hair club. When I called they said end of this month. We are going to Florida on Saturday and am hoping she will have it by then and that she will love it!!! I am glad you had a great experience and it sounds like Savanna will have it in time for school. She really will have the chance to have a wig catered to what she wants and it may make a difference in her desire to wear a wig. We went May 4th and am still waiting..Urg..

Sam got a wig from Children with hair loss and likes to wear it in the house for play. I decided not to move forward with them at this time and get it trimmed. Now that school is out she is not wearing her wig too often since it is hot. She wears the headbands with hair sewn into them, like the pic of her in the black head band. I just ordered one more for the summer It maybe something to consider for Savanna. I am hoping this new wig is going to be like it is described, not hot and meant to wear endlessly like your own hair. My friends husband has been wearing their hair for years.

A few weeks ago Sam broke out in a full body rash which I thought could have been something from the zoo since it was the next day. I finally called the derm and took her in. She felt that Sam was reacting to the meds and that that her body has been upset. (however, I saw a posion ivy warning yesterday, so I am wondering now) She said she has seen regrowth after such a reaction. Low and behold about 2 weeks later Samantha's hair is sprouting in several areas and starting to turn color. We will have to see what happens. The hair is very noticeable when light shines on her head and it could be just the beginning. Needless to say I am very excited. Her hair seems to be coming in in order that it fell out oddly...We started the treatment up again after 3 weeks with a lower so. So far so good...I am spreading the applications out over more days to ensure no problems.

As far as Savanna's desire to do treatment. It is a personal decision that she has to make since she has to bare the reactions. We should be happy that our kids are healthy and can accept who they are without hair. I think Savanna may have reached a comfort zone and self acceptance. And that is awesome..Think how much stronger she is then the average kid her age. I know Sam would be fine to walk around bald if I let her, but I won't..Have you tried talking to Savanna about going to see a Derm to discuss some options.

I am giving Samantha a vitamin with Biotin and I just found a liquid form of biotin and I give her aloe vera juice daily.. There are some moms doing some natural things you may want to try..

I wish you a wonderful summer and luck that things will turn out. Would Savanna be interested in being a pen pal with Samantha. I think they are the same age...Samantha has enjoyed corresponding with another peer with AA.

Sorry for my novel..

Hang in there!!!
Cindy

Maria, I will email you..

If Savanna is ultra senstiive then Sam's treatment maybe too harsh for her. She is doing squaric acid, SADBE..Her body has to produce a rash each time I apply it in the area . If it doesn't her body is not responding. Samantha has had no issues with that. She really tolerates a lot. She gets an itchy scalp and all. Now, that is feeling hair she is even more excited, but we don't know how long it will take or what will happen. This treatment is safe for along term use. Like everything else there is no guarantee that her hair will stay when we stop if and when she has acceptable growth. Her doctor says that she has seen patients keep there hair so we will have to see how it goes...
Check out www.hatswithhair.com and www.hiphats.com. These are the sites i got those headbands from...I will post as soon as we get our new hair..Cindy

Hey Maria, Hope you are having a great summer and continued regrowth..Just wanted to let you know Sam has an apt get her new hair on Aug 12th...And, it looks like the treatment is working..She is having nice regrowth on her scalp..:Love the new pictures of Savanna..Cindy

Hi Maria, I am happy to hear from you!!
First, did you get my address so the girls can write?

We had a nice trip in Florida and since coming home Sam has a ton more regrowth, but a long way to go. She is slowly filling with white hairs. We try to go to the beach on the weekends and she swims at her coaches pool one day a week outside with no covering. We went to the doctor this week and they were happy to see the hair and said we can bump treatment to 2 a week now. I hope she does not get that awful rash from twice a week. When Sam is at the beach for prolonged sunlight I do a hat or swim cap on and off and I have 70+ sunscreen (Coppertone). I hope Savanna's head is feeling better. She must be so sensitive to the sun.

Samantha's new hair is in from the club, but we are not getting it till Aug 12th. We are going away to the beach this week and then she has sports camp. I just assume wait till all of her activities are done. But, it did take a lot longer then they said. I called a few times to find out where it was and then my last call this week was good news. We are going to use the tape because we need to be able to take it off for treatment. Sam is so excited to have her new hair for school. I don't anticipate any dislike issues. I saw the pic with the new wig on your page and it was so cute on Savanna. Honestly, I think you should invest in a headband with hair. Samantha has been wearing them all summer. www.hatswithhair.com. They are pricey, but if she finds she likes it, get a few in different band colors. We have 4 and I recommend only human hair. We have a synthetic ones and I don't like it. The one my page is synthetic and I don't like the hair, but I got a new one in human which she wears, but not for playing. She just wore it when she was in a play for theater camp, no one knew.

I can't believe the summer is half over..We start school Aug 27th. How about you? Sam is so excited to be a first grader and we keep up with her learning over the summer so she is good to go..I did have to remind her that 1st grade is all work and little play and she said I know mommy all we do is study.

We are having a Hannah M PJ party tonight with a few girls..I need to go get the house ready..

ttyl
Cindy

Hi Maria, How is your summer going? Samantha is getting her new hair next Wed. Have you heard anything yet about when Savanna hair will be ready. Samantha is looking forward to it.

How is the regrowth going? Samantha's hair is growing in. steadily and still no brows or lashes. We still have a long way to go. I hope Savanna's regrowth is staying and growing.
By the way, love the new pictures..

take care, Cindy

Hi Maria, thanks for the post. I am sorry to hear that Savanna's regrowth has stopped. While we are excited for Samantha I have my fears she will wake up one morning with it all gone. Some days I wonder if some regrowth fell out and my husband says I am crazy. We are trying to stay positive that this treatment is going to do the job. Today I noticed some fine hair in he brows so time will tell.

Please tell Savanna that Samantha loves her new wig. She hasn't worn one all summer, but is wearing this one. It is very easy to put on and take off. Trust me when I say that it is so well made that you can't tell she has a wig on. The hairline is nearly invisible and the part looks natural. We did trim it again and it now looks more like her old cut. They really nailed her natural color.I need to take a pic. I told Sam we would get her pics done too and when we went school shopping yesterday we picked out some new hair accessories. She loves combing it and having long hair again. I will have Samantha tell her all about it and send her picture. How did the start of school go? We start next week. I am sending you an email with my addy.Cindy

Maria, I was thinking of you guys. How did it go Friday?

Sorry to hear your apt was canceled. I was pretty frustrated myself when her hair did not come when they said. The woman told me there has been a back log because of the earthquake and fires in CA. I hope it comes soon...I think it is great you want to purse some treatment for Savanna. It sounds like she may respond to something since she gets sporadic growth. I know exactly how you feel about growing and losing. It was so hard for me to watch her hair fall out and I cried hours a day. Now, we see her hair coming in and turning color. People are telling her how much more she has from when they saw her. It is crazy. I get nervous that is all going to fall out and we put her through this for nothing. I now see body hair and in sunlight eyebrows are starting. I think I will cry more then Samantha. It will break my heart if her hair does not grow. She is so excited about it.

Good luck on Friday..Please let me know how you make out and I can't wait to see a picture. I love the new pics you posted. I th ink you will be pleasantly surprised how well they match the color. I know we were blown away. I waiting for our glamour shots to come in and will post them. When Savanna reads Samantha's letter I want you to know that she lives by those words and they are her own thoughts about wearing a wig. I think you have an understanding of how much Sam likes her wigs. I am interested to see how Savanna feels about Sam's thoughts. Have fun Friday!!!! Cindy

Hi Maria just wanted to say hi. Savanna is georgous, I read your post and hope that your lil girl is feeling better. As a mum with a child who has Alopecia I can totally relate to your worries and concerns. It is nice to know others do relate to your experiences.

Take care
Regards Sharon

Tell Savanna that Samantha and I are very proud of her and excited that she had the courage to wear her wig to school today!!! She must really love it. I am sorry that the length was not right, but how was the color? Did she get Samantha's letter? I popped on here to check for a message from you before starting my day and I am so glad I did...I am sorry to hear you have some issues with the wig, but they will get it right I am sure. Samantha did not get a measured cap so it does not fit her whole head. The next one we get will be though. It will interesting to see which one Samantha will prefer. If she does not like the cap, I would ask for cap made from a mold. That cap fits the circumference of Sam's head and she likes it.

As far as the sweaty head. We only have that issue in the warm weather and Samantha has dealt with it well. The wigs have never come off or moved and she has only had taped wigs. I find that when she takes this wig off the cap barely feels wet, where as the other one was wet from the sweat. I will say that because she is hot, the wig peels off easy and given that she has hair I am glad. I have only been washing it once a week. You don't need to wash it daily.

I can't wait to see the pictures!!!!

Oh Maria, it sounds like Savanna had a great day overall. When Samantha came home from school I told her that Savanna wore her wig to school today and she was so excited to hear that, that she wanted to know how it went. I can't wait to share her post with her. I can't wait to see her new hair. Samantha has never had anyone say anything to her because we transitioned and no one has seen her with hair. In Savanna's case the kids are used to seeing her without hair. But, I think the compliments will be a great confidence booster and think of all the other people she will meet who don't know her and therefore won't know it is a wig. You may have found something she likes!!!!! I also took Samantha to pick out hair accessories and we did picks..It really makes them feel special and no different to glamorize. Are you still thinking of revisiting treatment since she is showing regrowth again? Sam's hair is continuing to fill in...We are so happy to hear Savanna excited about her new hair!!!Cindy

And that is sweet what she said about Samantha too..Samantha has really developed a friendship with another first grader on here so I hope we can add Savanna to that list...

Sorry for all the posts, but I just read your post to Sam and Sam said she really loved it and was jumping up and down saying my letter made a difference..I don't know if it did, but she said I knew people would love her hair and think she was pretty...Aren't 6 yr old girls sweet until they become teenagers?

your daughter is so cute. so far so good with school. my daughter is just wearing her baseball caps and is doing fine. she is just so unfazed by this whole thing. i really don't know how she does it! but i'm so happy about it. did your daughter wear the wig today? does she wear those hats with hair? they look kind of cute.

Maria,
I understand how you feel. I hold my breath everyday hoping Boni doesn't come home crushed. There will always be "kids" out there who don't know her and will poke fun. Keep her close, talk often, and help her understand that if those kids did know her they probably wouldn't say mean things. Remind her that she has lots of people who do love her and well, some kids just don't understand what it means to hurt someone so much. Hang in there. G

Hey Maria, how is Savanna doing with her new wig?

Oh Man, I can't believe you are having this issue with the wig, especially since Savanna is showing an interest in wearing it. I am really happy and excited to hear she wants to wear her new hair. It sounds like she has a great support group of friends at school to help her out when the wig fell off. Her friends deserve a pat on the back for treating Savanna so kind.

I am assuming you have the same wig that Sam has. The wig fits the circumference of her head, not the whole head. Am I right? Samantha has not had any problems with it falling off or not sticking. True, when she sweats I think the tape may not be as tight. Samantha is able to just roll it off without it hurting. It makes me nervous sometimes that she will pull out the regrowth.

Here are my suggestions:

First we want Savanna to enjoy wearing her hair and make it comfy for her. Can she wear a headband over it to help it feel more secure. Samantha loves wearing her headbands again.

Second, I would call the hair club and ask to speak to someone and see what advice they can offer. It could be like you said that the size is wrong and you and they already no that and are making another one.

When I put Sam's wig on I tape the whole thing around on the film part of the wig. Then, I stand behind Sam and have her slightly tilt her head back. Now, you place the front of the wig in your hand inside out (so you have the mesh cap facing up). Next, place the front of the wig gently on the top front of the head and then slowly roll it back till it is on her head. Then I give her head a good pat down. Occasionally, we get a few pieces of hair stuck on the sides and i just pull them out and pat down. A few times, she has said it is not sticking and rips it off. Then, I just tape over the wig partially. I use a red roll tape. Is that what they gave you?

I hope I am able to help you..Please keep me posted and let me know what I can do to help. I can always try to video tape putting the wig on and send it to you.

I am off to meet my husband for dinner. It is our anniversary tonight. Keep me posted!

I am glad I could help..It does sound like the size could be the issue because we are not having any problems...Samantha and I are looking forward to seeing her picture and Sam can't wait to get Savanna's letter. It may be silly of me to ask, but do you think Samantha's letter had any impact on her wearing the wig to school? I am going to post the Glamour Shot photos soon..Cindy

Hey Maria:
My daughter is 12 with AU. She has had it for 3 years now. She has had 4 vacuum sealed wigs made w/ real hair. She doesn't want her peers to know. She did tell her 3 closest friends. Being in the 7th grade this is a tough year. You have boys and hormones to deal with! I know what you mean we as parents hurt so much. Sometimes I think that it harder on me than her. I get angry and feel sorry for her and myself sometimes. I don't let her see me get upset,but there are still days that I get so angry about her having this. She uses a little eyeliner because she a pre-teen and her hair is so realistic. She has bangs that covers the no eyebrows so she really doesn't get the stares etc.. that she would get if she were to wear a cap or scarf. I don't know is she will ever be ready to do something like that because she wore a wig right away from day one. Keep in touch and let me know how Savanna is doing.
Terri

Maria, You are so welcome!! Reading your post has brought a tears to my eyes that I can begin to explain. I can't even speak right now. I think it is fantastic that Savanna has been wearing her hair despite the issues she has had with it. Just goes to prove what a strong girl she is inside and I think she has learned who are friends are. That they like and accept her with or without hair. Samantha started her letter to Savanna and will finish in today. We are looking forward to seeing the pictures...((HUGS)) Cindy

Maria, I love those pictures..Is the wig from the kids club? My husband read Samantha your post this morning b/c i was very much choked up. Samantha was so excited to hear that Savanna is wearing her wig. Letter is coming in the mail soon...

I think I know what you are saying. You can see the front of the cap now that I am looking at it more closely. On Samantha's you can not see the cap at all...Samantha thought her hair looked awesome. I just think it is great all around that she is wearing this one and is feeling good in it..Her letter is going in the mail today and Samantha wanted to add something special to it so I said yes...Have a goo day..

I like this wig alot. it suits her so so much and she looks just adorable.

Hi Maria, Yes Mia is doing better in school since they did the assembly explaining Alopecia to the school..She still has her days but its not about school now....Savanna's new wig looks great...Is she getting use to it..Mia still refuses to wear the wig or anything on her head lately.she claims everything makes her itch..Thanks for the post.
Maria

I am glad Savanna got her letter and surprise. Samantha was very excited to send it to her. Now you are going to get hooked in your house. I thought the story behind the name was cute..If Savanna adds Sam screen name they can sent webkinz mail to one another. Sam is enjoying her correspondence with Savanna thus far..Have a great day :)

Thank you Maria. I'm definitely going to lean on site members here. As a mom, it's so hard when you can't "cure" your child. When you can't "fix" it. Savanna is a beautiful girl and I'm happy that she has your love and support.

Hi Maria! We're doing fine today, how about you and Savanna? We have yet another appt. tomorrow, and I'll keep you posted on how it goes. I've set my expectations so low when it comes to derms!

Thank You Maria for your kind words. I am still in shock, and the pain I feel for what my beautiful little girl is gonna face is unexplainable. Fortuantly she is so young, and doesn't understand right now. We have many people that stare at her, but since she is so young, we get the "Oh my daughters hair didn't come in until she was 2" Last night was the first night that we went out since her diagnoses, and I was SO aware of every person that looked at her, I felt it in my bones... of course it could have been the fact she was dancing in the booth??? I know I can't be paranoid, and I know I have to pull it together for her sake. She is a strong little force, and we will all be fine. Reading what you wrote "Don't laugh at me" broke my heart, because is my every fear. We recently just moved to a fairly small town, and I worry that acceptance here will be more difficult... but it could always go the other way. My girlfriends did have a good point that kids can be mean, and if Taryn did have hair, she would probably get teased about something else. Thank you again.

Hey Maria, how is Savanna doing? Have you gotten the new wig yet? I hope she is still wearing it. It looks beautiful on her. Did Savanna ever send Samantha another letter? If so, we never got it. I actually called the hair club about 2 weeks ago to see if her new cap is in. They ordered a different cap and I wanted to know if it would require less tape and cover more of her scalp underneath. I am starting to see the regrowth underneath and I am getting concerned about putting tap on her hair. She said she'd call as soon as it gets in. I am finally starting to see brows popping out. Today we were trying on clothes and the light shinning on her face made me see a lot of white hair on one brow and dark hair popping out on the other. I am totally going to crash if all this work fails her. Not telling people about her AA is starting to get stressful for me. She did something that upset me at a birthday party in front of two parents from her class and hopefully brushed it off quickly..Makes me glad I don't pick her up for school and have to see parents everyday.

Maria, I am so excited for Savanna. We hope she does well on the test. I can relate to Savanna feeling bored in school. If Samantha was not in the Spanish program she'd be bored too. Please let me know how she does.

The news about the wig really stinks. I am mad and upset too. Here you have this child who refused to wear a wig and suddenly has an interest and it is not fitting right and overall is not made right. I hope they don't count this wig as one of your 3. Samantha is not having any issues with her wig so it is upsetting that you have to deal with this. When I talked to our club about 2 weeks ago she said there is a delay. I think I told you that I called to ask if the measured cap would require less tape and give her more hair underneath so she can do more with it. I am getting concerned about taping over her regrowth, but she does not have enough for clips. When it comes in they will call me. Occasionally, hair comes out, but not like you are talking about. I wash her wig once a week and she generally does not wear it on the weekends..Keep me posted!!!

Sam will be excited to have a pic of Savanna and looks forward to it..
Hang tight...Cindy

Hi Maria, thanks for the post...A letter for Savanna went into the mail this week. We are doing well. Her scalp is about cleared up and her hair is still coming in. I am noticing eyebrows, but I am getting frustrated. She will get a few dark hairs that stay around for about 2 weeks and then it falls out, but there are other white hairs still there..I can't figure it out and I get upset. I had a complete melt-down on Monday and I was paralyzed the whole day . We had wig issues that morning, an hr to get it on and alot of tape wasted. It never happened to me before and everything just hit me all over again. I have been weepy lately. That day I got an email from a teacher of hers in the school that her child was just diagnosed with AA and I was just upset the whole day. Sorry for all the rambling..We have it in her heads that she will have short hair in no time and I guess we have to keep positive. Her wig is being taped over hair now with the exception of an area in the back. Her new wig is still not in and I am hoping it will need less tape since the cap will fit down to her ears..I am just annoyed by it all now. That day I ended up throwing a head band on her for extra security and it covered my bad job of getting it on.

How is ACE going for Savanna? Any news on the wig? We love the wig on Savanna. Samantha always says how proud she of Savanna for wearing her wig. Sorry for my rambling..I am sure you wish you did not say hi now...

And on a different note. I decided to start a CAP group here in MA after the new year. I have corresponded with Betsy, but I do need to call her.

Write soon,Cindy