Thanks Maria!!!!

I will be thinking of you guys on the 21st..Please let me know how you make out. I hope Savanna loves it!!! Now, if only ours would come in too..

Cindy

How did it go?

Maria, Savanna has done quite a 360 in the wig wearing dept! Bummer about the apt. Samantha wears her wig all day during the week and opts not to wear it on the weekends. I am fine with that, especially since her hair is growing her scalp can breathe during the weekends. She likes those headbands.

As far as wig care, the only time hair comes out is if Samantha accidentally sticks the tape together and the hair is caught in the middle. Then, I try to remember to use alcohol to loosen it up. Samantha has been warned to be more careful. We only typically only wash the hair once a week, sometimes twice and after swimming if she swims with it. They told us not to use a comb with the hair and to only use the brushes they gave me to use with it. I don't think you need to wash more then 2 times a week. Other then that I don't know what to tell you. I think it is a great idea to use one for school and one for play. That is my plan too. But, I do think you will find in the hotter weather that Savanna won't want to keep it on. Samantha head gets hot and it just rolls off her head, but now that it is cold she wears it all day until bed time and we need the alcohol sometimes to take it off. I am frustrated that her second one is not in yet and it was ordered Sept 1. They told me today they are going to put a track on it...They always have an excuse for why it takes so long...

We went to the doctor yesterday. She is very pleased with Sam's hair growth and said it seems solid since Sam could feel her pulling it and no hair was coming out. Now, if her brows would just stay in as they grow..

Hope this info helped some..I look forward to hearing how you and Savanna like the new hair.. Have a wonderful Thanksgiving!!

Anytime Maria...Let me know how it goes next week..I would have Savanna wear or bring the one she wears now to show them...Hope you had great family day!

Thanks for your post on my blog Maria. I have been waiting to hear how it went at the hair club or was that rescheduled again?

Glad she got it..Samantha has no interest in keep it on for days, but I would not mind a stronger tape that would let her sleep in it if needed. I find in the pool the tape is not enough, she needs a cap on. Post some pics!!! You must be thrilled that you found a wig she will wear or shall I say wants to wear and wear and wear!!. I am still waiting for her new wig, but I am so frustrated because she is taping to her hair is many places and taking it off makes me nervous. Does Savanna have the cap the goes down to her ears? We don't and that is what I am waiting for, hoping she will need less tape. The top and sides are filling in faster then the back and front... Let me know how you like the tape.

Maria, You are so welcome. Samantha and I talk about Savanna all the time and she always says how happy that she will wear her wig now. And as a mother we always try everything until our resources are exhausted. I guess what Samantha told Savanna about wearing her wig really happened to her. When kids tell another kid something, it is not the same as if it came from a grown up. That tape sounds great, but we would never be able to use it with her hair growing. You have me very excited about getting her new wig. They said it was ordered Sept 1..The wig she has does not come to her ears so you can see the hair underneath so it is not that full full look in the back and you just can't do as much with it. Her wig looks great, but in the back if it lays messy I can see the difference in the hair not coming from the scalp. Hope that made sense..Have fun with the new hair and I can't wait to see the pictures..

Maria, Thank you for posting the new pictures of your daughter. They are an inspiration to me. Your daughter is very pretty. I hope my daughter handles alopecia as well as yours.

Maria, I love them and I love the expressions on her face..She is so much like Samantha..Are you guys anywhere near Palymra VA or even Atlanta GA? I maybe spelling it wrong. I am considering dodging camp this year and I doing a traveling trip with Sam and I want to hit VA, GA an FL to visit friends and family. I have not told my hubby yet though.. Just FYI, I use a flat iron on Samantha's to make it straight and it has not damaged the hair. I see a big difference in the two wigs. Is this one wavier? And you can't tell from the front like the other one...Do you think overall, this cap does not need as much tape? Samantha has the mold one and you need to tape the whole wig.

Samantha said a funny thing to me this morning at the bus stop. She said mommy, I like having Alopeica. When I asked her why she said because I get to watch my hair grow. When I said what if it stops she said then I won't like it anymore..I just had to laugh..

Hi Maria,
Thank you for the welcome! :o) It's nice to know that someone else knows exactly the way I feel. My daughter is Taylor. She is so so beautiful and happy. We are in the middle of her losing all of her hair. Today is the first day she felt the need to wear a hat to school. I'm so lost as to what to do for her. You are right.... it is much harder on me as her mother than it is on her. :o( She would like a wig, but I don't know where to start. Could you help me? Thanks. Caroline

That is really thoughtful of Savanna...NO, I have not heard about her new wig coming in and I am getting quite anxious because this wig is not going to work for her soon with the hair she has coming in. I need a wig that needs less tape..They said they would track it and call me back and of course I haven't heard anything. They have it noted to call when it arrives. If I don't hear anything by XMAS I am calling again..So sick of their excuses..

There is a mom who posted about a drug her daughter is using that is internal. It is an inflammatory drug called sulferazine. If you look at my page she is poster before you with a phone number. It may be worth looking into for Savanna. The important thing is she is happy!!

What are your plans for her birthday?

Maria, I have the same questions and my parents ask all the time will she need to do this even if all the hair comes back..I just don't have the answer. That treatment Katie mentioned is tempting, but why change what is working for us right now. I think you an Savanna are just going to have to make a choice try something vs see what the future brings. You already know her hair is capable of growing so give it a jump start. I do have to say, this treatment is on my raider if what we are doing fails in the end.

Samantha would have loved the party you are planning? Does Savanna have alot of there music? She sings it all day long.. I have it all downloaded on itunes..Samantha would have fun making her cd for her birthday..Let me know..

Maria, Thanks for your thoughts. I loved the pictures of your daughter. She looks quite the character! Full of spunk. Gotta love that in our kids. Lauren is like that too. Her sense of humour just gets me going and her way of living life. Does she always wear a wig. I loved the curls and the strawberry blonde wigs- she is gorgeous! Nancy

Early Jan seems pretty quick to me to get an apt..I am glad you are finally willing to look at some alternatives..It will give you something to think about. What does your husband think about trying something? What is on your radar for treatment ideas?

Thanks for the suggestion....

I am so fed up with her wig that I am calling the club today...Now that it is winter time her head is not hot so the wig is really sticking to her hair..I can't watch her take it off..I get worried the wig is yanking out her hair somedays..i am going to post a pic of her regrowth later if I can..

I posted some regrowth pictures..Tell me what you think..

I asked Lauren if she wanted a pen pal and she thought that was a good idea.I love Savananna's photos. How would you like to have the girls write. I haven't done anything like that from this web site.
N.

Thanks!!! Well, I called Hair club today and it is in!!!! We are going next Saturday to get it..I hope you and Savanna feel inspired now..

You sound more optimistic about trying something then 6 months ago. Your excitement is jumping off the page. With the squaric acid your body must respond in the form of a rash on the spot you treat. Your arm is sensitized until you get that rash. Samantha took right away and had then blistered 10 days later. You also have an itchy scalp. On occasion, Sam has had a rash on her body and the doctor told us not to worry because it means that her whole body is reacting. As she put it to Sam, she said her body is mad her for making it do something it does not want to do. Samantha is a very good sport and puts up with it all. I have to say the occasional rash is usually on the inside of her thighs and it does not bother her. But, if she gets it on her arm, it is more visible so you know how that is. I hope answered your question. I can't wait to hear about the apt..

That's okay..She is sending Savanna a card too..I can't wait for Saturday. I swear I am pulling hair out every time she takes it off..

I would love to tell you about our experience with sulfasalazine. It's such a long story it would be much easier if we could talk live. Please call me on my cell--404-660-3414. I understand your hesitation about trying sulfasalazine. I share your fears, but after many many hours of research, conversations with doctors and sleepless nights we decided it was worth a try. If my daughter had any adverse reactions we would stop it immediately. Sulfasalazine is not for everyone, but it has been a miracle for our daughter. Please please call me. I understand what you're going through and would be happy to share my story.

It's our mission to spread the word about this medicine to parents with children that suffer from alopecia.

Samantha and I wish you all a Merry Christmas..We get the new hair this Sat. We have to reschedule since we got blasted with a big snow storm last weekend..

Maria, Samantha got her new wig yesterday and I am so upset that I can't even begin to tell you how sad I left there and have been. I am so frustrated with Alopecia this week. They stylist cut the hair with bangs when she knows it is not how I like the hair worn. I am not sure she realized it. I specifically said are you cutting some whisp bangs for underneath and the next thing I knew it she cut bangs. I hate it and Sam likes it. She told me if I am that unhappy with it she will send it back and have hair added to it..I am so disgusted you have no idea. If I had paid for this wig I would have sent it back..Sam said she likes the way the cap feels, that is more comfortable. How is Savanna liking her new wig? We did redo the color since she has hair now. I told her I am not sure she will need another one and she replied yes she will. How does she know how much hair will be on her head by April..I am just so annoyed. I saw a few hairs on her pillow the other night and that upset me too. I try to say it is just the cycle of hair growth, but I don't know what to think. It is still growing in at its own pace..Oh well, I don't know what to do anymore..That is my rant today..Hope you had a nice Christmas and have a Happy New Year..

Maria, have a nice week with the family and Happy New Year..We are going to get blasted with snow and am not going anywhere now. Sam says this cap is more comfortable and she wants to keep the bangs for now. I still have the other wig..I don't know what that lady was thinking.I do have a feeling she forgot what she was doing. Did Savanna get Samantha's card she made. We sent a dreidal in it. Do you have her derm apt this Friday? take care,cindy

Have you looked into sulfasalazine yet? It's truly been a miracle for us and I really hope you'll call me if you have questions. i'm at 404-660-3414.

Maria, Sam got Savanna's card today..I hope you got Sam's..How did your apt go at the derm?

Hey there, Is Savanna already for her birthday..Samantha is making her a card, but she takes so darn long to make them. She is a true artist I guess...
Too bad about your apt. But, your new date is Sam's birthday. We are growing so let's see what happens. I posted new pictures last week. Sometimes I see hairs on her, but yet she still has plenty coming in so I hope it is the cycle. I took her for cranial therapy and I am wondering if it had an impact on her. I noticed white hairs in the front where she is smooth and bald...take care,Cindy

Have a great time at the party...It sounds like a party Samantha would love. I told her too bad she wanted pump it up b/c I came across a place that offers karaoke parties.

Please let me know what Katie says.. Yes, Samantha lost all of her hair, but when we started she had a few strands of hair which eventually all fell out and she did have a few lashes and brows too pre-treatment. Shortly after the start itall came out, but it was already on that path. I would say a year later she has more hair now then she did this time last year. This time last year we were starting the first application. I posted new pictures of her growth if you did not see them.
Take care,Cindy

HAPPY BIRTHDAY SAVANNA!!

YOUR FRIEND, SAMANTHA :)

Something does not sound Kosher to me..

how was the party?

Glad she had a good time and that Savanna liked her pictures..She has a class project to make something with 100 things..My daughter is drawing 100 pictures and making a collage with it. I can't wait to see the final product. Sam likes her wig, I had it..I am finding a lot more hair coming out of this one then the other one and I feel like it is not as full in the front like the other one. I think of you when I feel that way. It is not quite as bad as the first one Savanna got. I would not let her wear it otherwise. Does Savanna still keep it on 3 days at a time? I am so excited for you to go the dr next month. Can't wait to hear how it goes. We are going on the 24th of Feb. Sam is getting lots of new growth now, on the top of head where it is smooth and bald. Ever since I took her for the cranial therapy she has been getting rashes and her hair on the top is growing. I am taking her again next week. I am giving her a break from the meds because I need the rashes to clear. The doctor said the rashes are the body fighting what the treatment is doing so it is a good thing if you handle it ..She does...Did you ever get hold of Katie?

Hi Maria,

I am so sorry to hear that Savanna has been sick...I hope she is feeling better, but I guess you are ready for a call to pick her too. We are getting another snow storm today so we have no school. It is our first snow day, but many schools have had several already.

When ever you write to me about Savanna wearing her wig b/c of Sam's letter it brings tears to my eyes. I think that Samantha and Savanna are going to be good role models for other children dealing with Alopeica. I am starting CAP meetings in March in my area. Not sure if I told you I was going to to do that. I just found a meeting space yesterday.

Samantha started wearing her old wig again this week. There are things about her old wig I like and things about her new wig I like, but overall I don't like the new wig. Sam says the old one is more comfortable, but the new one is easier for he to take off with the hair she has. I also think the old one is easier to put on. If she did not cut those bangs. I am finding alot of hair coming out of the new one and the front does not seem as full as the first one which is another issue I have. She said she ordered it less full. I really don't know what to do. They both have pros and cons for me.

Treatment-The insurance does not cover the meds, but it is on $40 a bottle and it lasts awhile. My dr. apts are covered. She was just on break from the meds because she was getting rashes that did not go away. I just did an application this week after about 10- days. She was fine. Every since I did the cranial therapy she is getting hair on the top front where she is smooth and then she got the rashes. She hadn't gotten any rashes like this in about 6 months..I am taking her again on Thurs. I am seeing lots of fuzz coming in. I wish I would see some brows. I do feel that if Savanna is willing to try something more aggressive it may work for her. We know she can grow hair. Her apt is on Sam's b-day so she will have good luck with her. We are going to disney Feb 11-18th and then having her party on 19th.

talk to you soon..Cindy

Disney was running a special so we are going on a good deal. She is having a pump it up party on the 19th, the day after we get back. I need to send out the invites so I am organized before I leave for our trip.
Samantha loves lotions on her, maybe I will have to tell Sam to tell Savanna how much she loves those girly things..I can't wait to hear what you and Savanna decide. I def agree that it does not sound like she would tolerate our treatment method..have a nice day..it is pretty white outside right now..

Maria, I am debating what to do with Samantha's new wig. She does not want to wear it and rather wear the old one. She says she does not like the way the cap sits on her whole head. Does Savanna have an opinion? I also don't think the girl did a good job even cutting the bangs. I am thinking of calling tomorrow to talk to a kids club person. Any advice?

404-660-3414 is my cell. Try me again! What's your area code so I'll be looking for your call.

Hi, Sam wants it longer too so she can put it up better in the back. I did find when we left with it longer it was hard to manage and we ended up cutting in a few inches and now I realize longer would be a bit better. I am going to have it cut to her back bone this time. When I come home and flat iron it straight the hair looks so much better. It is hard to judge the way they do the hair because you leave with it fluffy. I forget that her hair was longer then her wig, but it looks different as a wig. I called them today and they said it was too late to make the change, but I could come down and we can talk to her. She said she rather not and will just wear what she has. Keep in mind the tape is over her regrowth now so who knows how it feels to her...We go to Disney in a week..YAY!!!

Hello Savanna, I feel the same way about Ray, His had alopecia since he was 3. When he first started school he would come home crying because of kids picking on him, put I kept on telling him Gods got a reason for it. His now in the 3rd grade and his doing great. He takes his hat off at school now and his in all sports. There are still some kids that pick on him about it, but Ray just over looks them and goes on with his life. His big sister Cierra is in middle school, so all her friends love Ray and make him feel cool.

I wll be happy to send a picture for you. I didn't get your call. What email address can I use?

I am leaving for Florida tomorrow and want to wish you guys luck at your derm apt next week. I look forward to hearing about it. Thanks for the nice words about Sam's skating..She must have a power over Savanna to try to new things...Enjoy winter break..

Wow, I can't believe you only live about an hour away from us. I would love for Ray and Savanna to meet each other. Does that sound ok with you? Please let me.
Paula

Hi there, how was your apt yesterday? We are back from Disney and had Sam's party yesterday..I so glad all the birthday hoopla is over. Seems like her birthday lasted forever..I am bumming b/c long story, but all my vacation photos were deleted from my camera and I am trying to get them recovered. No luck yet.To my surprise I got a message that Sam's new wig is in!!! I am shocked given that is was ordered Jan 3rd and every other time it has taken almost 14 weeks. I think I am going to get it b/c we don't like the new one and she is back to wearing the old one. I am hoping this will be our last one and come summer she will have a short cut. Today Sam had her annual check up and her ped saw her regrowth for the first time. She told me that she is getting reports of excitement from the derm and feels that her story will be published at some point based on the notes they are sending. We will see. We got Tues to see the dr. Did you ever get the info on Sulferazine?

I asked Ray and he said COOL.... I think this is great, I hope Savanna feels the same way. Keep intouch, Paula

Hi Maria, sorry to hear your apt was a bit disappointing. But, it is great that Savanna is getting lashes and brows. We don't have any yet...Please don't invest any energy into the Sulferizine treatment. I asked our doctor about it and she hands down said no to it. She said that is suppresses your immune system and it has awful side effects and your body is at a disadvantage for getting sick. Sam goes to Children's in Boston so I trust the doctor there and her dr. is a Harvard Professor. I know you have to make your own decision, but it is not worth it to me. Samantha won't have her new wig till next month. But, I can't wait to see some new pics of Savanna with her wig and facial hair growing. Sam is planning to get a letter out to Savanna. For some reason her pen pals have dropped off the earth and she was feeling sad about it recently. I am glad you stepped in with that situation. I hope things work out for your niece. talk to you soon..Cindy

Would you be open to letting Savanna make her own page on A world? I am thinking if Sam and some of her friends had one, they can do board messages instead. What do you think?

Great, I told Sam that we will put one up this weekend and she is excited to have her own"email." if you want to call it that..That stinks about the camera. Did I tell you I lost all of my photos from Disney and hoping Ritz will recover them. I accidently reformatted my card. And I got a new camera for the trip to boot. I just got a cannon powershot s10 IS and I love it. It is priced well on amazon, but you can find it in best buy..I love it!

HI SAVANNA -Just to let you know I have my own page. You can send me messages to my page. Maybe your mom will let you have your own page. That would be awesome. Samantha

Hi Maria, Samantha saw your post on her page.She is excited to write to Savanna on here..Please let her know when you are up and running. How is the new wig? How are the lashes and brows going..write soon...

Hi , thank you for the compliment. i am so excited.

Hi Maria, how are you guys doing with everything going on.. Sam is getting her new wig this week, Can't wait since they were able to match he color to her regrowth. Didn't Savanna get her new wig a few weeks ago.Post some pics!!
Any chance you going to Alopeicapalooza. We will definitely be there. Cindy