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Permalink Reply by Rose Marie' on August 19, 2008 at 8:24pm

Hi

I was just reading another thread here and RJ put an idea to another lady which included the use of a colouring book that helps explain alopecia to little ones.

I think it would be very helpful for you and your little girl as well. Take a look and see what you think.

It is on the the Forum topic SOCIETY CULTURE POLITICS "What to say and how to say it ????.......................etc. The colouring book is called Being a Friend.

I have e-mailed RJ to see if he can pop the link here.

Hope it helps.

Rosy

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Permalink Reply by rj, Co-founder on August 19, 2008 at 10:37pm

Hi, everyone. Here's the link to the alopecia coloring book. Enjoy! :-)

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Permalink Reply by Megan on August 28, 2008 at 11:10pm

hi Christina
thanks for that great reply. we've been on vacation the past week and i'm just watching as my daughter loses more hair every day. i have just a few questions for you. was it weird for you to wear a hat to school every day? i'm planning on having my daugher wear a hat for right now because i'm hearing that at the age of 5, she won't keep a wig on, plus she's totally fine wearing a hat. it's just such a bummer, because she's really into dance class and i don't plan on keeping her from doing anything she wants to do. she'll be wearing her little cap in ballet class!

how did you respond to anyone that wasn't so kind to you at school? i'm just trying to prepare her for anything she may encounter. thanks so much for your advice.

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Permalink Reply by Vickie on August 20, 2008 at 11:48am

Hi Megan-My name is Vickie and my 9 yr old daughter is going thru the same condition. She was diagnosed in late March. I tried one cortisone injection with her, but didn't want the toxins from that in her body so I've been trying natural remedies(injections and medications) was having great results and regrowth and recently had a set back, all of her new growth has fallen out. I am still on the treatments with her, now started a Gluten-free diet and just wishing and praying for a miracle. It is the hardest thing seeing your child going thru such an odd disease. I've told my daughter what the worse outcome will be and she is fine with it, I on the other hand am terrified, sad, frustrated and mad. I haven't heard of olux-E, but I have a friend who's mom is also a homeopathic doctor, and I was advised that once this is present in the body, it will always be something they will have to deal with. The most important thing is that your child having the healthiest diet possible(organic preferred) and stress free as possible. Hope this helps.

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Permalink Reply by Megan on August 28, 2008 at 11:18pm

hi Vickie,
how is your daughter doing? it's nice to hear that she is dealing with this somewhat like my daughter is. when my daughter first lost her hair, she would have a few incidents at school where someone was teasing her. she was pretty bummed out about it, but got over it quickly. what is your game plan of how to deal with possible teasing?

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Permalink Reply by Vickie on September 7, 2008 at 5:49pm

I have no idea on my game plan for dealing with teasing. My daughter is, I think very mature for her age and she likes explaining things to people. I think she would end up probably explaining what Alopecia is. I honestly don't know, but it would need to address it soon, since her spot is quite obvious now. A friend came over the other day and they went into the pool. I kept on giving her signals to cover up her spot with the other hair around it, but she ignored me and kept on going. That showed me she's not self concious about it and I'm probably making her. I honestly don't know what to do. I just take it day by day and when the issues arise, we confront them at that time. I don't know if that does more harm than good, but she seems to be dealing with it better than what I am. It was nice to hear from someone going thru the same issue. Thanks for writing back.

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Permalink Reply by Maria, Mia's Mom on August 30, 2008 at 9:03pm

HI my daughter had somewhat the same experience she lost almost all her hair in july of 2007. After using steroids abbout 90% grew back beautifully, after 2 months off steroids she started losing hair again and has lost about 80%..I guess for some people it is a pattern. as for olux when we seen the first spots in 11/06 thats what we first used and it did nothing for my daughter. I dont know what is worse the first hair lose or the lose after regrowth? GOOD LUCK.

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Permalink Reply by Carmen Dayhoff on September 7, 2008 at 10:52pm

i think that if she has confidence and is used to going to school and places without her wig on that that would be the way to go. there is such freedom in it. be proactive tho. get involved with her school and bring information to the children and to the school. help them understand. people are only curious and don't know what else to do other than stare or whatever, especially children. i'm sure a 5 yr girl will know what she feels most comfortable with, mind would have been.
talk to the teacher, principle, school nurse, etc... before hand, make these people your best friends. it could be difficult in the beginning but it will all work out in the end. remember that people see things the way that you do. what you are comfortable with won't bother another person, and it won't affect you if it does bother them.
i live near indy and there is a young girl here who is 10 or 11now (she lost here hair at age 4 i believe) and has lost her hair and has made the decision to go without a covering. she is an inspiration to sooo many people. go to Olivia Rusk on you tube and on alopeciaworld and check her out. she does modeling, interviews, her mom is head of a support group, they started an alopecia awareness cause and created tshirts, etc... they have done soo many things to bring good to this issue.
her story is very open and inspiring.
i hope his will help you.

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Permalink Reply by estrella on November 4, 2008 at 5:45pm

Hi Megan:

I know exactly what you are going through. I have a 6 year old daughter and she lost her hair already twice and right now she is having regrowth. The first time was awful for her and for me I thought I could not take it, the second time was very sad too but my daughter was in a way ok. She now understands that her hair is going to fall and regrowth through her life and I accepted that no matter what is going to happen in future with her hair I have to give her a happy, healthy and normal life. Out there you are going to find all kind of remedies and doctors, I am trying right now accupunture and I do not now if it is going to work. I have never tried with olux-E.

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