Comment by Claire Eadie on June 26, 2013 at 3:39pm

Thank you for that .... U are so right my beautiful girl will not be defined by hair or no hair or even some hair ..... She is a larger than life little girl and I think my job is for her to be self confident as a person ! Iv already decided that if the worst happens and she looses more than is there I will share her journey and shave mine too !! It's only hair at the end of the day and I will also point out the fact that Iv spent far too many pennies on razors over the years for what society deems the hair we shouldn't have as girls ;) I'm still heartbroken I can't lie :( I know been a teenage girl is all about the hair make up etc but with 4 big bros I dare anyone to diss my girl for been special :) xxxx

Comment by Irongirl on July 3, 2013 at 7:16pm

I imagine how sad you might feel.
I noticed in this forum that most parents try natural treatments with their children before they try prescription medications. I'm not a child but onion juice is helping my AA.
Re- you shaving your hair, I'm not sure if that would make a difference since she will see people with hair somewhere else. We are all different and unique just the way we are.
Just my two cents. Good luck!!

Comment by Lili Añel (aka Eulalia) on July 3, 2013 at 7:16pm

Go to www.childrensalopeciaproject.org The are also known here on Alopecia World. They will be able to help you.

Comment by Roberta on July 3, 2013 at 7:23pm

Hi Claire,
My daughter has alopecia too. She started getting patches when she was about 2 years old, but wasn't diagnosed for a couple years. Initially her patches went away on their own (or maybe from the meds) - we've had quite a few bouts of hair loss (sometimes quite extensive) with hair regrowth. About 2 years ago her most recent bout started and progressed to total hair loss. That doesn't happen to everyone, but it is more likely when it starts at a young age. When the dermatologist told me she had alopecia I almost started crying in the room, because I knew what it meant.

I think the most important thing for your daughter is having a supportive family. The next most important thing is finding other kids who have it for her to meet. We went to the NAAF conference for the first time last year and it was really eye-opening - for both us (her parents) and my daughter. It was the first time she had seen bald children - and there were lots of them. This becomes more important as she gets older and becomes more reliant on friends. Be sure you get the support you need too - I'm not sure where you live, but there are support groups listed on the NAAF website that you could look into. I met with a counselor for a while - there is definitely a grieving process involved in coming to terms with this diagnosis. Little kids tend to handle it better than their parents (they are not self-conscious yet).

I don't think there's any point in you telling her the worst case scenario at this point - that's the kind of thing that you can gradually start to talk about if her hair loss worsens. As AiChan said, probably the hardest thing about alopecia is that it is so unpredictable. We'll all be hoping for your daughter that this patch goes away and she doesn't have any further episodes.

If she does get to where she needs or wants a wig - there are a number of organizations that provide free wigs for kids (Children with Hair Loss and Hair Club for Kids). At her age though, she may just prefer to go bare.

The other thing that can be helpful is letting the adults around her know what is going on. If she is in daycare, talk with the teachers and consider sending a letter to the other parents (there are sample letters on the NAAF website) explaining what is going on. Having it out in the open really helps.

I wish you all the best as you and your family come to terms with her alopecia.

Comment by Funnybone on July 3, 2013 at 7:29pm

For a number of years, my son would ask me every year if he could shave his head for this annual father-son photo contest in the local paper. I would always answer no thanks. His hair was generally kept short anyways, and would have been easy. Now he's older and somewhat vain about how his hair, so whenever we butt heads I just ask would still like to do the father-son photo contest. That chills him out instantly. :D

I developed AA in my mid-20's after my son was born and progressed to AT, and now AU. But there are so many amazing AA, AT and AU women to look up to who have been dealing with it most of their lives. See Anna Fitzpatrick... http://youtu.be/ANLtisjH-Zs

Comment by LouAn Williams on July 3, 2013 at 7:33pm

Hi Claire- I joined this site because of my sis. I'm 44 she is 42. She was diagnosed at 8. I remember he being diagnosed, but for the most part I don't remember anything about it until we hit our 30s. I tell you this because my mom may have been extremely wise, or just extremely relaxed. I am not quite sure which ;-) I think it was good that she didn't dwell on it too much. My sis always had bald spots. She was very lucky though, because a lot of times when we were young her bald spots would come at the bottom of her hairline and were kind of covered up with hair on top of that. And, she was lucky because they always seemed to eventually grow back and fill in...that is until she hit 30.

I'm not going to paint this all roses and sunshine though. My sis is a red head, and as that goes, it kind of defines you in a lot of ways. In addition to that we grew up in the big hair 80s, and at that time in our high school lives her alopecia wasn't that bad and she wore the spiked up bangs with all the aqua net she could muster ;-) Fortunately for your daughter, we are in a very global culture where beauty is defined in such a variety of ways now! I think you can easily show your daughter a lot of great examples in some very subtle ways without dwelling on the disease. She'll need to know that beauty comes in all shades, styles, shapes and sizes. Heck, as that goes, my sis has been a size 5 or less the majority of her life and me....well, I got my mothers side of the genes, and haven't been a size five since I hit puberty in 6th grade ;-) But, my sis has her beauty (and believe me she is) and I have my curvy beauty too.

There will come a time when your daughter will have to transition. What I mean by that is that she will have to make a bold decision. Do you wear a wig? Do you shave off what isn't falling out and go completely bald? Do you wear hats or other clothing to complement the smoothness of your head? This was a very difficult transition for my sis, partly because being a red head had truly defined her. You'll have to be there for her when this time comes. You'll have to listen to a lot of concerns and sadness and do your very best to be a positive force. Ultimately, all you can do is love her though. She will never get through it until she accepts and embraces the disease as a part of who she is.

My sis is a shining example of coming out on the other side of this transition with humor and grace though. I know from her perspective it probably isn't always easy even now, but I'm so proud of her for making her decision, embracing her disease as a part of her and for making the most of it. Sometimes we laugh when someone comes to the house and we're just sitting around lounging =) She quickly runs to the bedroom and comes out and says "instant hair" with a big smile. At first, when she started wearing wigs it was really hard for her, because she didn't want anyone to notice and swimming and other things make it hard, but now she is past all that. She has no problem transitioning her wig from one style to another (growing six inches) overnight if she feels like it or if she chooses a new (usually yearly) style that is different than the last.

Even now, I'm tearing up a bit as I write all this, because I truly understand what you are going through as the loved one and I can't even imagine if it were my child instead of my sibling. I'm here to say though, this is a disease that you can absolutely live a normal life with. Hang in there, Claire.

Comment by Margaret Brennan on July 3, 2013 at 7:34pm

Claire,
welcome to the world of alopecia. I have had it since I was 2 years old. spots from then until I was 19 and then I lost it all. Times were very different then. I wrote an article in last months NAAF newsletter that tells my entire story. What I can tell you is the same thing I have told other parents for years. 1st. You have to get yourself okay with this. Not see your daughter as anything except the wonderful little girl she is who just happens to have alopecia. 2nd. As she grows she needs to be able to explain to others what she has and to talk freely with others about it. 3rd. don't make her cover her head with hair unless she asks for it. Let her know the choices available to her but that is she wants to go without hair that is great. when she goes to school tell her you are going to educate all the kids parents about alopecia so they will all understand about her hair loss - if she has it then. Give the parents the info they need to be able to educate their children. Schools are very good about sending home a letter from a parent who is explaining about it. NAAF has copies of letters and all kinds of helpful information for parents. What I never had growing up was the information myself to help me cope. I never knew another person who had AA so I thought I was the only person in the world without it. When she is 5 take her to a conference or earlier but at 5 she can participate with the other kids.
You will be fine as long as you come to terms with it yourself. Be grateful every day for the wonderful child you have and how lucky she does not have a life threatening disease. This disease will teach your child about kindness, compassion and caring about others. I have seen that over and over again. Life is good.

Comment by Mommy of 2 boys on July 3, 2013 at 7:40pm

My 6 yr ok son was diagnosed with AA when he was 4. I did not want to try any medications as its just introducing chemicals in his body. He lost about 50% of his hair in about a month. It (thankfully) lasted about 5 months. I tried onion juice, all if his hair grew back (could have been coincidence) his hair has been back with no fallouts for almost a year! I also keep him on a good daily vitamin regimen, which I heard is a huge help!
Good luck! I remember when my son was diagnosed I cried for days!!!!! The worst part is not knowing. But you have to e strong and teach her to be as well. I wish the best for you and your daughter!

Comment by Lilia on July 3, 2013 at 7:48pm

hi, when my son was 2 and half he started getting patches(he was diagnosed with alopecia areata), and at his 3rd birthday he lost almost all of his scalp hair. i was devastated, as you can probably imagine. but i was glad that he was too young to be aware of it or be self-conscious about it. the cream the doctor gave us didn't make any obvious difference, but within months hair started growing back, and i felt it was just "the time for it to come back". since then he only had occasional patches, but they grow back and now he's 5 and has a patch at the back of his head, he doesn't see it and it doesn't bother him. I understand your worries; i was worried too, that once he starts school other kids might make comments that might upset him, but to be honest with you other kids don't seem to take notice of it and luckily most people are aware of the condition and know it's not contagious or anything. (it's never as bad as it was that first time, now he only gets one or two small patches at the time) the hair will come back don't you worry. and let her watch Rapunzel,girls love princessy stuff;) Unfortunately there is a high chance your child might have alopecia patches re-appear at some point in the future..

Comment by Margaret Brennan on July 3, 2013 at 7:49pm

Also about treatments. this is a systemic disease for many of us - no hair, no facial hair, no leg hair etc. putting creams etc on ones head does nothing for it since it is a whole body issue. There at this point is no cure so I would not bother with any treatments. They are costly and might give you some relief but it never lasts and for a child you send the message that they are not okay the way they are. If there was a fullproof treatment I would tell you go for it. but there is not. I had every treatment imaginable and here I am 69 years old and still no good hair. I have grown fuzz, a few hairs etc but nothing worth writing home to mom about. My son also has AA which was very hard on me since we knew where he got it. But he is a happy, contented man with a lovely wife and his own business etc. He has never worn hair and told me he has no interest in it. My young friends in our support group recently almost all decided to get rid of their hair. One 9th grader did a fabulous job and got her school Key Club to do a major fundraiser for us. The other beautiful young woman started kindergarten with no hair but later one decided to wear a wig/prosthetic but her senior year she decided enough is enough and left it at home. She is totally my hero. She is a confident, smart, young woman going off to college in NY City and will be great. I am so pleased her mom called me when she was 2 years old and her hair had fallen out. I have walked the walk with them and am so pleased with the outcome. If your daughter loses all her hair she can also be that young woman one day.

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