Hi Megan,
How are you doing today? How is your little one? Sometimes it's harder for parents than it is for the kids.
I just wanted to stop and say hello!
LeslieAnn

Hi, Megan. Welcome to Alopecia World! This is a great place for great people, so be sure to make your positive presence known. :-) - rj, Co-founder

Hi Megan, I wanted to welcome you 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 and we look forward to your input. Cheryl, co-founder

Hi Megan,

Welcome to Alopecia World. There are a great group of people here and lots of parents who can offer you good advice and support. I was surprised just how many kids in our daughters peer group have some form of Alopecia.

My daughter Samantha is 6 years old and started 1st grade this week!! She started losing her hair in May 07 and by Dec she barely had any hair and we purchased her firs wig. Samantha has enjoyed wearing a wig and wears them when she is at school on special occasions. When she is home she typically wears headbands with hair sewn into them.

Samantha is currently doing a treatment through the Children's Hospital and her hair starting growing back in June. Although she has a long way to go. She has no brows or lashes as well. I have never educated her class because I have not told the parents about her AA. I just have this thing that I don' need to air my child's medical issues to the town. I did contact her teachers and school administrators about Samantha and were she was with treatment and that she would have a new wig when school started. Since Sam wears a wig and we disguise her AA I don't feel necessary to share. Each situation is different. If your daughter is going to have visible hair loss at school, I do suggest you educate her class so they will understand and send home a letter to the parents so they will be ale to talk to their children. You can find educational material through NAAF and CAPS. CAPS, Children's Alopecia Project is based out of PA. They run alot of children and family activities. You may want to contact them. We live to far to join their activities, but I hear they are wonderful.

If you are thinking of getting a wig you have a few options for a free hair piece. Most recently, Sam got a wig from the Kids club which is part of the Hair club for Men. They will give kids age 6-17 3 free hair replacements a year. Most recently added pics are her in the wig. If you plead a good case they may give one at age 5. You would need to call JoJO and the kids club office to talk to her about an application and your situation. She is super nice. www.hairclub.com. We love the final product.

You can also try Locks of Love, but they go by financial need and I found the process long and frustrating and in the end we go nothing out of it.

Next, you can try children with hair loss. www.childrenwithhairloss.com No questions asked they will send you a temp wig and then to a place in your hair to get a wig made. All services are free.

If you wanted to try a headband with hair like my daughter wears. We get them from hatswithhair.com. I only recommend the human hair scarfablous. I tried them all.

I hope I was able to answer some of your questions. I wish your daughter lots of luck with regrowth again. Are you going to see treatment? Please feel free to email anytime..Cindy

Hi Megan,

We tried several creams with no avail when we first discovered her hairloss. I took her to 3 doctors like a mad person on a mission to grow her hair and a year ago I cried all day when she was not with me. I still get sad somedays, but it is better. Sam is very happy and has accepted her hair loss with no tears and has a high self-esteem and self-confidence.

She is currently treated at Children's Hospital in Boston. It took me so long to get her in. They are doing a treatment called squaic acid. SADBE. It is a harsh treatment and many can't tolerate. Basically, you need to sensitize your arm to see if your body will produce a reaction in the form of a rash. If you get a response then your body may respond to the treatment. next you apply a dosage each week on a different area of your scalp. Again, it needs to produce a rash on that area of application. Likely, she would also have an itchy scalp. You don't want to get a blister which can happen and did happen for Sam 10days post her skin test. We had to wait for it to clear before moving forward. She did have a few road blocks along the way, but in June she started having regrowth. We started the process in Dec, but it took awhile to get on a regular schedule. Let me know how your apt goes..Ask away any questions you may have..

hi megan r u online now..if so would u like to go to chat.i would love to speak with u.
maria

i know exactly the situation you are in I will email you with my contact information...i also have a lil boy he is 3 1/2...hope to speaqk with u soon.
Maria

I requested you as a friend i think u need to approve me so I can email you.....I still dont have the hang of this.

Yeah, Della WILL NOT wear her wig. She wears her hats, and boy does she have a lot, but she'll take them off when she is inside. Right now she has 25% of her hair left. I don't know if she will lose it all or not, but we are prepared. I hope things go well for you and keep in contact with me!

Hi Megan, how is your daughter doing and you? I see you are going to a doctor in Garden City who specializes in Alopecia. I would be interested to hear how your apt goes and wish you luck next week. I can't belive you are going all the way to LI from NJ. Where is GC is the doctor. I grew up not too far from there..

Megan, it answer your question, YES...When Sam lost her hair my husbands high school friend told him that he had it and no one ever knew, including him and they went to school together. And my neighboor noticed during the winter that Sam looked different and asked ifs he was sick. When I said no, she said does she have Aleopica. I said yes and we keep it private. She responded that her youngest daughter had it at age 2 and today she has full head of hair. And just last week the gym teacher told me that a colleague had it as a child, lost it recently and then it all grew back. Good luck at the doctor! We have to believe. Samantha's hair is growing now with treatment and she is very excited, but has a long way to go. I look forward to your post after the apt.

Hello Megan, How are you doing? My name is Maria and I have a 6 year old daughter with AU and has had it since she was 3yrs old. I know exactley what you mean about wearing wigs, my daughter refuses to wear them in public..she just likes to play dress up with them... LOL...she is most comfortable with her hats, but we did have her a wig made from Kids Club and she actually loves it and she wore it for the first time to school today and I am very proud, but dont know if she will wear it tomorrow.. I wish you and your daughter the best of luck and in hopes her hair will grow back and stay.... Maria

Hello Megan, I was glad to hear from you, your daughter too is so very cute, what beautiful hair she use to have, I know how it feels to watch their hair fall out and there is nothing you can do about it. savanna had blonde curly hair almost look like your lil girl. She has adjusted well to her alopecia but she has had several years to adjust. She lost all her hair within months and has never grew anything back. She was taking Cingular for about 6months and her hair started growing back and she got her eyebrows and eyelashes back, I dont know if it is from the medicine or not but that has been the only time she has any hair growth and since she has been taken off of it her hair fell out again.
I have noticed white fuzzy hair all over hair and a small patch of hair in the back. I dont do any treatments for her only because I know there is no cure for it and I refuse to try anything that will cause any kind of discomfort or pain. I have seriously consider trying treatment but I havent yet.

Savanna loves her hats, that is her comfort zone, she has so many I couldnt even begin to count them. She did not wear her wig to school today I was a lil disappointed and was hoping she would, but I refuse to make her wear it. I strongly believe picking your battles and this is one i assume to let her win. This is her condition, not mine and she needs to deal with the way she feels most comfortable, I am just her side kick...( I am here to stand next to her and back her up) because she is my HERO!!!! Maria

HI MEGAN, How was ballet for Paige? Mia also started this week. Ballet went much better than school. The only issue with ballet was that a brat that came in for the second class was witing inthe hall she was about 9yrs old was laughing and told her mom look theres a bald girl in that class..It took all my energy to not say something because it was the first day and there were about 15 parents there..the mother just laughed didnt even tell her daughter to be quiet..I saw you new pic..the losing it pic reminds me of how mia lost her hair..I will post new pic so that u can see how much she lost..At least part of your post made me smile, the part about the cod liver oil soaunds just like me as soon as i hear something I aso go out to try it....Do u think paige will take the cod liver oil?Hope to speak with u soon.
Maria

Hi Megan, Good luck with he cod liver...Does paige want to be a mermaid or ariel? Maybe u can get her to wear a wig? Mia has changed her mind several times about what she wants to be...supposedly this week the school said they would show the dvd on alopecia to all grades...I hope it makes a diffrence I will keep u posted on how it goes.TAlk to you soon.
Maria

How did your apt go?

Hello:
My daughter who is 12 has had AU for 3 years now. She is in the 7th grade. This is a very trying time for us. I would love to chat with you some time. I hope Megan is doing good. She is just precious.
Terri

Hi Megan..I have not heard of the med your doctor is giving you. I can't believe it cost that much $$$$. Are you going to use all 3 the things together ? Samantha is continuing to do well. No big changes yet...I hope things work out for you daughter..Keep me posted. She is adorable not matter what!

She is just precious. I think that it is harder on us as parents than the kids. Espeically with her age because she can't rationalize it all in her brain. (which could be a good thing) My little girl is getting some regrowth back, but not much. She wears a vacuum sealed wig made of real hair. She uses a little eyeliner and has bangs. So no body really doesn't think about it anymore. I have boys and hormones coming in the picture now. I am not looking forward to the drama with that! Take care and keep me posted on how your little girl is doing. I hope school is going good for her. Kids can be so cruel.
Terri

Hi Megan!
I get cortisone injections when my hair sheds. I'm actually still getting them once a month, even though my hair has stopped falling out. I think that they helped for me, although I know that it doesn't always help for everyone. When I first got them, they were really traumatizing for me and they were really painful. But now, i hardly notice them and I'm totally comfortable going in to get them. Although it isn't much fun, it only lasts a few minutes! Anyways let me know if you have any more questions. I'd be happy to answer them :)

Hi Megan,

I can completely understand what you are feeling as Amber is going through the same thing. She has a little crop as well and is not shedding for the second time. She is also turning five in Nov so we are on exactly the same boat. Maybe not a boat that we would like to be on but I guess we can take comfort in knowing that we are not alone in this journey.

karem

Hi Megan, how is it going? How is Amber doing? Did u start the treatment...I havent heard from you hoe all is well.
Maria

Sorry about the name mix up to muc confusion at once but the post was intended for u..Sorry to hear the treatment isnt going well...we started anthralin 10 days ago and Mia isnt having it...Sorry to hear about school, there are rotten children everywhere...I also went to a chinese med dr. in the past he gave me something for Mia to drink.but that never worked out it tasted terrible..she is so picky about things she eats/drinks..Good luck with what ever it is you decide for treatment, because at this point I think we all need luck because none of us know what to do to help the situation..talk to u soon.
Maria

Megan is a doll! You mentioned this was her second bout of hair loss. Did she have full regrowth? Jessica has 3 wigs. She liked wearing them last winter but when the weather got warm she didn't like wearing much of anything on her head. We've been putting flowers and butterfly tatoos on her bigger bald spots. She likes scarves and hats. She really likes the wigs that are sewn into headbands, like the one in the photo. And she loves crochet caps. She clips flowers onto them that match her outfits. We like the generic colors - black, white, etc... She really has been doing well with it. She thinks it really funny when older kids tell her that she isn't supposed to wear hats in school and she gets to tell them that she can cuz she's special - then she just pulls her hat off and shows them why! She also thinks it's funny to tell people it's contagious. She's such an easy going kid. I think she's lucky that way.

Thank you for your words. Your daughter is beautiful. You're right, there are some amazing people on this site and there's a lot of knowledge and experience being shared.

Hi Megan, I mostly wore ball caps and "bucket" style hats. I think that the hats can certainly overwhelm little heads/faces. Have you thought about maybe checking out the headscarves that come in kids sizes? Check out: http://www.4women.com the owner, Susan has a great collection of headscarves that can be wore lots of different ways and they come in kids sizes too! Lots of pretty fabrics and are a nice alternative to hats.

If I see anything else that might be good I'll drop you a line :-)

Hi Megan, I'm a slow responder but......

You'd asked if Jessica keeps her wigs on. She loves the ones with headbands. She always wears them. At first she thought she could only wear the black one if she was wearing black and the read head with something yellow, orange or red. I couldn't figure this out until one day she asked me if her hair matched her outfit. To CUTE! Try www.headcovers.com! It was silly hat day at her school two days ago and she decided that because she gets to wear a hat everyday it was only fair for her to go without on hat day. She had me put some little clips into the little whisps of hair she has left and off she went. She's amazing!! Keep in touch! Kim (Jessica's mom)

Hi Megan, Mia is about 95% bald know..I will post new pics soon.Mia has school pics in 2weeks last year she wore a bandanna this year she will do what she pleases. As for Paige the fuzz is a good sign. Mia had fuzz befoe her regrowth last time..Mia also had very light eyebrows and when they did regrow her hair and eyebrows were much darker..Keep feeling positive..hopefully the positive energy will show positive results. Good luck hope to speak with you soon.
Maria

Hi Megan, I was reading on another posters wall about the regrowth news. I am so happy to hear that. Do you think it is the treatment? And, I was glad to read that I am not the only mom turning on light during sleeping hours looking at eyebrows and hair fuzz...I took Sam to the doctor last week and the doctors were thrilled to see her regrowth. She was just getting fuzz when they saw her last...cindy

Well, what ever is working it is exciting. Samantha's hair started aggressively falling out around this time last year. Dec 1st will mark her one year anniversary of wearing a wig. I think I will cry. By the end of Jan it was all gone and by March her lashes and brows were gone. She never had regrowth till now so I don't know what to expect. She is taking Biotin, Aloe Vera juice and most recently the cod liver oil. How much do you give? Sam takes 2tbs a day. She has a layer of hair about 60% of her scalp and some thicker patches. Her brows seem to start to come in and then a few days later are gone. She currently has a few hairs on one eye. Some come in dark and some light. I am waiting to see some lashes. We went to the doctor on Wed because her scalp was flaking and she got scabs from picking. It is almost gone now. We think it was a shampoo I started using. Like I said the doctor hadn't seen the regrowth and was thrilled to see her. She feels strongly that Sam will have a positive outcome in the end and we are doing everything right. You should check out hatswithhair. Samantha loves them. It is headbands with hair sewn into them. www.hatswithair.com..
Cindy

Yes, post some pics..

My daughter just saw Megan´s photos and she said she is so beautiful, she felts better about herself because she can be as beautiful as Megan.
I´m so glad you add photos, thankyou

Megan, are all your pictures from this year? How long did it take for our daughter's hair to fall out after seeing the pirst patch? Exactly what vitamins does she take? Have you tried that Thymuskin product on her? Did you try injections? How is your daughter's diet? Is she an anxious child? The doctor's won't answer my questions, so I have no one to go to.

Your daughter is so pretty. My Daughter has a few larger patches and lots of small ones. I check her head about 30 times a day to see if those small patches are growing or not(as of right noe -one of those patches is growing). She has no clues as to what is going on. She has long VERY THICK, long, shiny brown hair. I never in my life thought I'd have to worry about her going bald! She has more hair than anyone I have ever known. So for now, the AA is not that nocticeable, but I wake up every morning and run in to her worried sick about what she may look like. I am willing (at this point) to try anything for her that is reasonably safe. I am very glad to know we are not alone. Thanks for welcoming me.

My daughter is a very poor eater, so I got her some very good multi vitamins, zinc tablets, and a HDA blend. It is a big chore to get her to even eat those. I have to bribe her with chocolate. How do you give your daughter the Biodin (what form and where to get it)? I want my daughter to have that too. I also got some tee tree oil shampoo. I know I am grasping, but I will t\ry anything to help her.n Thanks, Tammy

HI MEGAN, PAIGE and FAMILY,
WISH YOU ALL A HAPPY THANKSGIVING.
MARIA AND MIA

Megan - Welcome aboard. I'm recruiting for the NJ Group with Alopecia. Please check us out in the group section and join in. Thanks...JP

Hey Megan, How is Paige doing? Are you seeing any results with the treatment?

That great Megan..Did Paige ever lose it all? That topical treatment must really be working some magic? We are hoping by Feb Samantha will have enough hair for a short cut. She still has areas of no growth and what she has is getting thicker..It seems like it is taking forever for her hair to come in. She will have a few brow hairs and once they turn they don't stay long. It is so frustrating..I haven't seen any new ones in a while..It is bumming me out. I know Paige's AA is different from Sam's experience. She has lost and grown before right?

I am really happy Paige..Are her lashes and brows coming in as well..I hope Sam has the same luck soon..Samantha loves to skate..She competes and loves it.

Megan, the regrowth looks fantastic!..How many weeks has been since she grew all that hair? I just posted pictures of Samantha's growth which has been moving along, but she does not have head Paige does...She started in the summer sometime..

That is happy news..I wish Samantha's hair was growing in like Megans. Samantha only lost her hair for the first time in the last year. We tried several things before it started growing in. She is getting thicker areas of area and some have nothing yet or very little that the pictures don't show it. I think she will do just fine when she goes to school hatless in a few weeks. I hope she stays on this path..

HELLO....HOPE YOU ARE ALL WELL..Just writing to wish u a HAPPY AND HEALTHY HOLIDAY.

That is fantastic Megan!!! Did Paige go to school with out a hat today? Sam's is just coming in the way it left, slow...Do you think it is luck or the Olux doing its magic? Do you see hairs come out of her head on an occasion. I do and it drives me mad. yet, she is still having plenty come in. I am trying to chalk it up to the cycle of hair. Cindy

I know what you mean about being crushed..I don't think I will take it so well if this stops..Paige looks fabulous..Please let me know when she decides to go all natural!!! Cindy

Hi. I am Maygen's mom. Maygen first lost her hair when she was 3. She had the flu and got really sick. With in a week or two, she started loosing her hair like crazy, not that she had much. Her hair grew back in and then it fell out again. It was only maybe an inch long. However we started using steroid drops and her hair returned when she was four. When she entered school she had hair about to the middle of her neck. She started getting small patches, but with steroid cream it controlled most of it. It was always towards the back or around her ears that she lost hair. This year when she turned 13 all of her hair started falling out. So it has been 10 years since we have dealt with this much hair loss. She just started taking steroid pills. She will be on them for 3 weeks. If in a month her hair does not grow back, her derm doc will not due any other treatments. We just went to the Hair Club for Men last Thursday and had her fitted for a hair system.
Overall, the kids at school are good to her. They know about her condition and think it is cool that she gets to wear different wigs. There are a few that say mean things, but I will make sure that it is handled. Maygen is a leader academically, athleticly, and socially at her school. She is kind to everyone. I think that is why others are kind to her. I do believe that we can have hope of her hair returning with prayer and faith, but also with acceptance of this disease. If it is not God's Will for her hair to return, then she will manage through life stronger than we could ever have imagined. I understand your heartache. We only want to protect our kids. We want them to have everything that we have and more. Be her strong rock to lean on. Talk, and talk and then talk some more about everything with her. Listen to her about how she feels, don't let other people's lack of knowledge or ignorance cause you pain.
Maygen told me a month or so ago, mom please don't be so sad. I asked her how she felt about what was happening, and she said; Mom there is a part of me that is glad I have alopecia. I was shocked! She went on to say that she felt the AA is what keeps her humble. She successful at everything she does and yet the AA helps her to remember that she is not perfect. I was dumbfounded. If having AA has helped to shape the lovely young lady that I have as my daughter, then I too am glad she has it. For it has allowed her to have the greatest attitude a mother could ever wish for her 13 year old daughter to have. :-)

Thank you. Your daughter is lovely as well. Maygen wore hats at that age all the time. I know at one time she had a dresser drawer full of hats. You know if you start to see hair loss again, I think you should try and get ahold of the hair club for kids. They have hair systems that they can attach with clips to the hair that is there. You will find that the both of you will be stronger people because of this. Your daughter is a cutie, big beautiful eyes and such an amazing smile!

Hi Megan. How are things with Paige? Is she ready to shed the hat? She looks great!

Tell Megan how excited we are to hear she ready to wear her own hair to school!! Please post a picture when you can. Sam is still growing, but not at the rate Paige has and we still have no facial hair coming in. We are making progress month to month. I will post some new pictures soon..I am so happy and proud of Paige!!!

Hey Megan, how did it go with Paige when she went to school hat less?

That is so awesome..Paige sounds like a strong gal.Please post some new pictures of Paige when you can. You should be so proud of her!!!Sam is progressing slowly..I am trying to stay positive.We see the doctor on Tues.