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
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.
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..
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!
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
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..
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, 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,
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
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Maria
maria
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..
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
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
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Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.