Replies to This Discussion

Permalink Reply by Deeann on March 12, 2009 at 1:28am

I was 7 when I was first diagnosed with alopecia. Your love for your daughter is very evident in the way you write. Love really is enough. My parents loved me, and nurtured me, and helped me through it. The one suggestion I will make to you is to try and read how she feels about treatment, and about wearing a wig. Thirty years ago, it was assumed that I would wear a wig. For years, I felt like I had to because it was the right thing to do. Things are different now, but I still read all these posts about mothers desperate to find a cure, and willing to try almost anything in order to see hair grow on their child's head. I would recommend that you just listen to her, and everything that she wants to feel and express to you. My hair grew back on its own (after 5 years), without any treatment at all. It fell out again after years of yo-yoing. Here's the blah, blah, blah part. I did graduate from high school, and I am still friends with girls that I went to elementary school with. I went to college, got married, and have two kids. I own a business, and am my own success. We do get through it. Even though it is difficult to see the end of the tunnel right now - It exists. I thank my parents for the way they handled things. As a mother, I know they did the best they could considering the circumstances, and I feel confident that you will too. Talk to other parents of children with alopecia too. There are so many helpful people on this site. I hope you've been able to get some sleep tonight. Take care.

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Permalink Reply by Laura Lee Kozikis on March 12, 2009 at 10:36am

Hi: I am a newcomer to this website I just wanted to say that I totally can appreciate what you're going through. My daughter who is 10 started losing her eyelashes, and eyebrows about 3 years ago, Unfortunaltely I didn't act on it right away thinking she was playing around. We've been dealing with just the facial hair loss up till September of this year, and now she is losing her hair from her scalp. It's a loss, and of course you will grieve. My sister ( who has now passed away) had some hair loss when she was around the same age as Hayley, and unfortunately I cannot ask her about her situation.
It breaks my heart to watch her go through this, but at the same time, I know I need to be strong for her. She's a very sensative person and I want to help her, but she is still trying to deal with it herself, therefore I feel if I'm patient, she will come to see that she will need to wear a wig. Right now she is not there yet, and I need to respect her feelings.Slowly I have been sugguesting that we go see a lady who sells wigs.
She has been doing steroids on the lids/eyebrows up till now. We recently had a biopsy on her scalp and will get results to confirm what I already felt.
Recently however I took her to an Optomotrist who did not want her to use the steroids on her eye lids any longer ( complications of Glucoma), now we have started putting eye drops in that is actually used for Glucoma patients, and one the side effects is the growth of eyelashes. Her dance recital is in June, and hopefully we will have eyelashes for the first time in a long time.
Hang in there. I think this website is wonderful.
My daughter just recently had a substitute teacher come into their classroom last week and she had AA, and she had no wig on.
She came home and said that I had been right and she was not the only one with this condition.
Just love her, and treat her like you would everyday... She will let you know when she's ready..
Laura Lee

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Permalink Reply by Dielle on March 14, 2009 at 2:47am

If I was you I wouldn't try and persuade your daughter to wear a wig. This experience is very different for the people going through it, but if you try to get her to do something specific like wear a wig she will feel worse about herself. Not all alopecians wear a wig and some feel more comfortable without one on, especially when they are younger. Personally I wear a wig now, but when I was in middle school I just wanted to wear a hat, and while I had one person in particular that teased me, the rest of the school was really great. Even though I wear a wig, I resent it heavily, and everytime I get a new one so many emotions come flooding in. Mostly I get angry, upset, and frustrated to the point where I may not go to school the next day because I feel so insecure. If I was you I would stop with the treatments, because I went to a world-class dermatologist (who specializes in alopecia) a couple of months ago and he said that all treatments at this point for alopecia are only temporary fixes and that when you stop the treatment your hair is just going to fall out again. If I was you I would just leave her be and be glad that she is otherwise healthy because some of the side-effects just aren't worth it. This is a very touchy issue (especially for girls), and while you should encourage her to talk to you or a therapist about what she is feeling, you really don't want to try to tell her what the "best" option is. I know that if my mum tried to tell me what was best I would be really angry and would throw it in her face that she doesn't understand what it is like at all. I would strongly recommend getting her involved with a therapist or some kind of support group for kids her age with alopecia because it really is hard to talk about it with someone that has no clue what it feels like. Personally I had a bit of a nervous breakdown at 16 because I just had such a hard time dealing with it and my chronic health problem (thyroid) and I internalized all of my feelings until finally I broke down and sobbed in my parents arms for three hours straight. Bottom line, if she doesn't feel comfortable or interested in wearing a wig don't push the issue. Hope this helps, because being a 18 year old girl that has had this since age 13, I think I know how she is feeling because I am also a very sensitive person.

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Permalink Reply by Rose Marie' on March 12, 2009 at 1:49pm

HI

When I read your post it took be back to how I felt 6 years ago. I believe you are doing well and I very much understand what you are feeling. You have started to research and educate about what to expect and how you might like to handle things. It's very early days for you, your family and your daughter. Keep doing what you are doing. Read as much as you can and ask as many people as you can about their experiences and how they are handling things.

You are right everybody needs the right to be sad to grieve about this situation as it is both sad and stressful. I understand the pain you are feeling. In my situation I never hid from the pain and I was very open with my family and daughter about the situation we were all in. As we were in it together. Somedays there will be tears from all and that's ok. Don't feel you have to continually be strong to get through. You will be once you have got over the initial shock. The decisions you make will very much effect your daughter, but in saying that trust yourself to know what she needs, remember you know her and love her as much as anyone in this world. You and your family are her world.

I think you are a fab mum already you are here being proactive and letting that pain be dispersed somewhat. You will get it together to pass on the knowledge you have.

The only advise that I will give is to educate yourself and continue to do so for as long as your daughter needs your input on this condition. Be honest with her and yourself and talk, talk, talk. This condition may take centre stage in your life's for a wee while (it sort of has to until you find your way). But then you will have learned and moved past the initial shock to a place where you feel you can help and will be able to move onwards and upwards. Then it will start taking a back seat to life and all the wonderful things your daughter is going to be.

Other conditions. Sometimes all you get with Alopecia Areata is Alopecia Areata, but sometimes their are other conditions that come along with it. Try to put your mind to rest, take her to the doctor to check her out and make sure there are no other problems that need to be dealt with. You are both going to be ok and you will be able to deal with this.

Hugs for you and your family and of course your daughter. You aren't alone there are many here ready to help, don't feel isolated because you aren't and never will be.

Take care and hear from you again soon.

Rosy

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Permalink Reply by Carley on March 13, 2009 at 4:40pm

I'm exactly where you are right now.

Last Tuesday, my 11 year old son woke up with a full head of hair, only to get out of the shower with large patches missing.

Here we are now, 10 days later, and his eyebrows and lashes are completely gone, along with most of his hair, and bald spots on arms and legs. Just totally out of the blue. I've never heard or seen anything stranger...

I know exactly what you mean about feeling sad and not wanting to let yourself.
I feel like I really have no right to cry or be sad right now, after all, he is the one going through this - not me, not really. I have broken down and cried a few times, but then I just feel guilty and like I should suck it up.

If my feelings are this confused, I can't imagine what his little spirit is going through.

It's much easier to be strong when he's around me and I'm worried about affecting his mood. Alone...I get pretty upset.

It just sucks this happened now....I'm just thinking of how mean kids were at that age. It makes me want to yank him out of school and homeschool him to protect him. But, I know that's not the way to approach it.

I think you just have to be strong and choke it back until she gets a chance to accept what's happened to her.

I can't really offer any advice other than to say "I feel ya."
We are just waiting to see what is going to happen now, and I'm trying to help him accept that this has happened...

No doubt about it...it sucks bigtime.

Hope this all works out for you. Please feel free to contact me any time because I'm freaking out too and not very sure what (if anything) I can do!

Good luck to you.

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Permalink Reply by Mari on March 13, 2009 at 5:50pm

You ladies have so touched my heart. What wonderful Moms you all are! For everyone involved Alopecia is a nasty scary beast. The only thing I really wanted to add is as Deeann stated, listen to the kids. I know it is terrifying, and you want to help and protect so much. Just talk and find out what your children are comfortable with. Wigs, hats, scarves, bald, drugs, lotions. All of those things can be soooo overwhelming, just take the time and talk it out with them so everyone is comfortable with the decisions. And just know you aren't alone, there are so many people here to help and support you! God Bless

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Permalink Reply by Dielle on March 14, 2009 at 3:01am

The best thing you can do for your daughter is to start building her confidence and telling her how great she is and teaching her that it doesn't matter what other people say or do so long as she is happy with who she is because it is a hard world out there, but not impossible. If I was you I would find a REALLY good doctor that knows a lot about alopecia and is excellent with kids that can explain to your daughter what is going on so that she doesn't panic. I would also recommend finding a support group for kids in your area or getting a therapist because the first few years are the hardest. Whatever you do don't grieve about the loss of her hair because our society is way too attached to it already and if she sees you "mourning' the loss of her hair it isn't going to be a good boost for her self-esteem. Instead be proactive and put a support structure in place for her so that she doesn't feel alone and isolated (two very common feelings). She is still a relatively "little" girl and so if you treat this the right way she might not be too bothered by it. I would also educate her about this disease so that if she chooses to go bald she can educate people that are inevitably going to ask her about why she is bald. Also consider teaching her witty and quick remarks as she gets older so she knows how to shut rude people down. Having had this for 5 years I wouldn't recommend any treatment at the moment because the dermatologist that I just went to is world class and the leading doctor on the research for cures/treatments of alopecia and he said that almost all treatments when stopped will cause you to lose your hair all over again and that there is a better shot of your hair growing in by itself and staying in than with any treatment. For the most part alopecians are completely healthy and have nothing else wrong with them so relax, although you may want to take her to an endocrinologist just to be on the safe side because autoimmune disorders generally run in packs, but not always. While it is a very upsetting disorder, the whole attitude of grieving is a little bit insulting because it feels like you think people without hair are less than everyone else. There are worse things than alopecia that could happen to your daughter, because as my mum says "everyone has something going on", which I have found to be true. She isn't dying, she just isn't going to have any hair, and it might even grow back on its own really quickly. As hard as it may be grieve in person because little kids can't separate strong sad emotions with a prognosis that is not life threatening. I know that when all of this started happening to me that I thought I was dying because the doctors were so grim and I could tell that my mum was worried. All you can do is encourage her and support her and make sure that she feels loved. Best wishes to your daughter.

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Permalink Reply by errantpigeon on March 14, 2009 at 12:57pm

Grieving is not insulting.

I am not grieving my daughter's hair loss. I am grieving the experience she may have, and the reality that my child may suffer emotional or psychological distress about her hair loss. It's an important difference, and my grief is normal and valid. I'm sorry to have to explain that here as I was looking more for support than to be told not to grieve because it's just hair. Any parent will grieve anything that may cause their child pain.

To the rest, thanks for your understanding and for sharing your stories. It helps to know I'm not alone.
Last night was better. I didn't stay awake crying or worrying. We shared the news with our friends and family and have gotten support. Now we wait and see. She has lost more hair, but is still at less than 50%.

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Permalink Reply by errantpigeon on March 14, 2009 at 1:53pm

I also meant to update.

My daughter went to the doctor and we are trying a steroid cream. I'm not convinced of its usefulness, but for right now that's where we are. We are going back in a couple weeks and will be referred to a dermatologist. It does just happen that our doctor also runs a hair loss clinic and says she has a "few tricks up her sleeve" (?). We talked to our daughter about how we've noticed she has some "spots" on her head where her hair has come out. We talked very matter-of-factly and yes, it is amazing how a mom can be steadfastly calm and reassuring in front of her children and melt in private, isn't it? I think the discussions have gone well. We have taken the approach of talking to her about what is happening as it's happening. Yes, we know her hair loss is pretty quick and that she's young and that there is a greater than average chance that this will progress to totalis or universalis, but we are not going to burden her with the worry that her hair may all fall out until such time comes. Her big sister has a friend with alopecia, and big sister (who is almost 8) is so inspiring to me. Of course, as soon as we showed her little sister's spots, big sister said "that's what happened to my friend then ALL her hair fell out!" 5-year-old did not seem alarmed at this announcement. I said something to the effect of "oh, really?". No one asked if little sister's hair will all fall out, but if they do we'll answer as honestly and compassionately as possible. It will probably sound like "hmmmm, we're not sure. Right now we can see little sister has some spots where her hair has fallen out. No matter what, we love little sister and she is so very special to us." Big sister has been so kind and compassionate. She asked if she could please help put cream on little sister's spots, and little sister wanted big sister to help. Big sister has said things like how nice bandanas look on her friend who doesn't have hair and that if little sister lost her hair she could wear a bandana, and maybe big sister could get matching ones. And so on. I'm so so glad my 5-year-old has her big sister in this way.
Right now they share a room and we are moving to a bigger house where we'd planned to separate them into their own rooms. They say they want to keep sharing. We were going to separate them anyway because they do bicker a lot and all that, but with recent events, I think we're going to put them together in the same room after all. I think having family closeby even physically like sharing a room with big sister will be important for my little girl. I'm so glad we have such inspiring children.

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Permalink Reply by Rose Marie' on March 14, 2009 at 5:53pm

Hi

You are doing really well. Your whole family is in this together and even though it is so very hard I know without a doubt that you will all find your way.

I said on my first message here to keep talking to your daughter and your family about this. I also meant that listening was part of that process and even though your daughter is little she will have things that will be quietly worrying her. (I can see that you are doing this - pretty wonderful really)

I think one of the hardest things for me as a parent was keeping those lines of communication open through all the ever changing needs that my daughter had. I remember when she was 14 years old she just really wanted to do her own thing. Which of course was fine, but I had to always be quietly present to understand her and be plugged into her needs. This condition is very challenging for parents and children. It takes a lot of effort and hard work to keep things on an even keel and sometimes you may feel like you are all drowning, but I believe with your family you will all be able to help each other. :)

I've never come across Dielle's point about grieving for hair being a little insulting before and even though I think what she says is valid, it hasn't been my experience with my daughter. I asked her if my grief made her feel less and she said no, she understood it wasn't because I was focused on this being her that was causing me the pain, it was the condition and the ramifications for her that was (as you have explained) causing the upset.

I think communication between child and parent with this condition is beyond imperative as children needs of course change as they grow and with alopecia I believe this happens tenfold.

Take care and hear from you again soon

Rosy

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Permalink Reply by KL's Mom on March 14, 2009 at 6:21pm

My daughter has alopecia totalis. She was diagnosed almost a year ago (at age 2). I convinced myself that her hair would come back. I have finally accepted that it may or may not. She is beautiful no matter what. Like someone mentioned above, it's dreading what she may go through that bothers me, not the hair loss itself. It is wonderful to have support like this. :)

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Permalink Reply by Dielle on March 14, 2009 at 11:43pm

I think I need to explain myself about the grieving thing better (never been too great at explaining), I meant that it was insulting to grieve about the actual hair being gone, not the experiences that it will lead to because the experiences are harsh sometimes and my mum was sad about that. That I understand I have grieved over my experiences but not my actual hair loss. It is different, but easily confused. sorry to anyone that thought I meant it was wrong to be upset at what the future could hold for the children because that wasn't my intention.

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