Alopecia

Helen - posted on 02/28/2009 ( 25 moms have responded )

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Hi, my Name is Helen and my young duaghter got Alopecia about 4 years ago. It has been really hard to deal with. The hair loss is really not that bad you get over that pretty fast. But how do you get over the feeling of helplessness. This is something I cannot fix. No matter how hard I want to. This illness remains. Each time it occurs it's different. Small spots, all the hair everywhere, larger spots, falling out then growing in, at the same time it is falling out. Strange illness.

It is also hard to watch as your child changes. Spirit goes down when hair falls out. Comes back up when hair starts to grow back in. When your beautiful young daughter buys clothes (dresses/skirts) to wear to school and then won't because her hair falls out just before or slightly after school starts. How can I make her understand that she is beautiful no matter what. With or without hair. When I say this I think she feels I have to say this because she is my daughter. Hope I am not venting too much. I have so many feelings I have been holding onto. Like not letting her see me get upset when her hair starts to fall out or get upset with how fast it is falling out. I have 2 cats at home and I find more of my daughter's hair on the floor then theirs.



Please write back if you have any suggestions or you feel the same way.

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Elisabetta - posted on 12/01/2013

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I am 36 years old and I passed all the stages of alopecia. For many years I was without even my eyebrows and hairs on the body, now I am back to the patches situation! What I want to tell you is that:
I am happily married and I have a young and beautiful daughter that thinks I am a beautiful mum.
Do not stress your children by reverse on them your worries for them future and the judge of the world.
Do not look at them with sadness, do not shop round for the miracle product that will give them back the hairs.
You are going just to grew them up in anxiety and feeling bad about themselves.
Just walk next to them hand by hand, help them walk in their future with a smile on the face, relax and happy.
When I stopped any treatment, after few years they start to come back. I do not have them back all ... but for me it is already something!!
I do not bother, I use a foulard on the head in fancy way and I walk around confident of who I am. I am a very popular person, people love me and my husband is very gelous of any other man looking at me.
Just kiss your little ones and tell them that every things will be ok ... It is not a lie, IT IS THE TRUE!!!

Tammy - posted on 06/20/2013

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hi my name is Tammy my daughter is 5 years old and has been told that she has alopecia areata i cry my self to sleep because of my baby girl going throu this how can i help her?

Amy - posted on 08/21/2009

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Hi Helen, I completely understand how you're feeling. My daughter is 12 yrs old, she started showing symptoms of Alopecia back in 2008 when she lost part of her eyelashes on both eyes. This year she lost all the hair on her arms and is loosing parts of her eyebrows and scalp hair. It too is coming out similar to what your daughter's going through. This by far has been the hardest thing to watch, I know it's only hair however I do see how it's impacting her. When my daughter's hair starting coming out she was crushed, she didn't think it would happen that fast. We talked and this what I told her - "The doctor said this condition was highly unpredictable and this may happen. Yes I know you're upset and that's understandable. Whether you wear the latest fashion in clothes or have hair it doesn't make you who you are. You get to decide you and who you're going to be. We have to continue and move on, you have some much to do and accomplish that whether you have hair or not isn't going to prevent that. You're still beautiful whether you have tons of hair, small baby like hair or none." I told her of different women who either had very little hair like the pop singer O'Connor (can't remember her first name right) or pretty much none like Farrah Fawcett and pointed out the things they did. We talked about how brave & courageous Farrah was to show everyone what she was going through and that she's still beautiful.
My daughter thought the same thing, that I have to say she's beautiful because I'm her mom. I tell her I don't say things that I don't mean. Up until about a week ago my daughter had never met anyone else with Alopecia. Our church so graciously covered the expense to get a wig for my daughter. The salon we went to had a children's wig specialist who has Alopecia and got it at about the same age as my daughter (she is 26 now). She met with us, talked with us, but most importantly connected with my daughter. This wonderful person will forever be part of our extended family. Just from having that person now being a part of my daughter's life is giving her a different perspective about this condition. She still has her ups & downs especially when classmates are insensitive and make hurtful comments. I try to remind her that sometimes what people don't know scares them and this is something others need to be educated about. That it could easily be them in this situation, that it could happen to anyone regardless of whether they're white, black, purple or green or come from a well to-do family or an average one. It's not anyone's fault that this has happen, one of the best things you can do is to let people know you're still the same person and you don't want to be treated any differently.
I have seen in my daughter that she has unbelievable inner strength, she is a strong girl and even though at times we think all of our positive praises aren't getting through to her, she amazes me yet again with that strength.
Hang in there, it is tough, your daughter feels all the love you have for her.
I'm here if you need someone to talk to.

Amy B.

Vinh - posted on 12/02/2013

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Hi, I have a 5 year old who has had alopecia for two years now, and the cycles of hair loss, growth, uncertainty, and effects of topicals are all things you women probably are all too familiar with.

I have found little online information to help parents best deal with our grief, and how to best shelter our child from the negative psychosocial effects of the hair loss. Aside from trying to suppress my own sadness, I am unsure about how to deal with her obvious self consciousness. Can someone please share advice?

She covers her spots, retreats from any sort of attention (whether or not related to her hair), and often doesn't express how she feels. I feel paralyzed in not knowing if I should help her cover up her spots, or just slowly try to get her to just pull her hair back and bare it all.

I tell her she is smart, funny, and kind. I tell her she is beautiful inside and out. I don't know if hugging her is enough. She is moody, and irritable and I ask her sister to be extra kind, but I am not sure if this is making matters worse. I don't know how to help her.

April - posted on 07/20/2009

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Hi Helen, I have a son who is 5 years old, he was diagnosed with Alopecia when he was going on two years old. It was devastating for me as a mother because I feared the worst, the doctors made me fear the worst telling me it was a sign of cancer, but thank the Lord it wasn't. It is something that a mother fears for her child, especially them being so helpless and little. Now at the age of 5 he is completely bald, it has not grown back and as he gets older kids ask him about his hair, and he just responds, "Jesus made me handsome this way." When I hear him say that it just breaks my heart and I realize that it is so true, he just enjoys every moment that he has playing and laughing and not carrying whether he has hair or not. There are days when he will ask me, "Mommy when am I going to have hair again," and we just respond to him the best way we can and he just says ok and goes back to playing. I don't think we can get over the helplessness because there isn't a cure yet, but I can tell you that I have learned to put my trust in God and believe and thank Him everyday because my son is beautiful, healthy, and my inspiration. I stopped taking him to doctors and I stopped the steroids, they are just not good for them at such a young age. I research as much as I can but for the most part we just let him be a child and enjoy every moment of it. I know it's a lot different because you have a daughter and I have a son, for girls it is definitely harder I think, but all in all, remind her everyday that she is beautiful no matter what.

25 Comments

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Everschul - posted on 08/13/2016

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Hello Helen. You said exactly what I've been feeling. I keep searching the Internet and hoping that there is some secret cure that I have not yet found. My daughter is 12 and has had hair loss episodes on and off since being diagnosed at 6 years old. I just wanted to say thank you for sharing. You are not alone.

Rob - posted on 10/04/2015

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Im a single dad of 2 girls.. Not sure if its my place here.. But just yesterday i noticed a couple of bald spots on my 11 year olds head. Gonna take her to the clinic tomorrow but of course i did some internet self diagnosing and im just freaking out. i know ishouldnt self diagnose but i always do.
The internet leaves that temptation there. Gurww im just here to vent. My girls have been through enough and it just doesnt seem to end. my daughter doesnt have many friends .. Its always been hard for her to do that. Now with the thought of her having this disease.. Ugh... I worry about her and what thr future holds.. Thanks for listening..

Tina - posted on 08/20/2013

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My son Nate is 4 and was 3 when he was diagnosed with AA. We tried treatment and his hair grew back but starting coming out again. We tried treatment again but I just couldn't take putting him through the pain. We have not been back. The steroid thinned the skin and the squaric acid burned his head up. He would scratch and cry. I just couldnt do it anymore. He is very energetic and doesn't pain much attention to it. I just don't want to feed him with my insecurities. It really breaks my heart.

Mamacita8841 - posted on 06/25/2013

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My 1year old daughter was diagnosed with AU (ALOPECIA UNVIERSILS ) a few days ago. So heart breaking. The tears just keep falling. She started to lose her hair, eyebrows & eyelashes about 2months ago. Her eyebrows & lashes are growing back quickly. I just pray to my almighty God, that they never fall out again. I will not lose my faith. I have a friend who had AA when she was 15 (now30) & told me to chop some tiny pieces of onion, put it in my babies shampoo, to let it sit for 15days and start using it on my daughter. I hope this helps.

Tammy - posted on 06/20/2013

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my daughter has AA she is 5 and i cry my self to sleep thinkin is there a cure but the doctors say there is not

Gina - posted on 06/10/2013

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My daughter is 4 years old and lost all of her beautiful blond hair eyebrows and eyelashes in 3 months. I too am devastated. I desperately search for an answer or a cure! I feel your pain. I tell her she is beautiful every second I can. I know that it is not enough and that she has to feel it for herself. I pray that she will. I pray for a cure.
Good luck to you and your beautiful daughter.

Irma - posted on 05/24/2013

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My daughter is 3 1/2 and has alopecia areata. In fact, she was born with it. Her spot is about the size of a quarter and is located about an inch above her ear. Now, we are seeing a derm doctor and he prescribed different ointments. They have been helping, but the spot is clearly still visible. Like the rest of you, I am worried about the teasing in school. I try to hide it for her, but feel bad because I want her to know that she is still beautiful (even with the spot). No one in our family has it and when she was born with the spot, we clearly had no idea what it was. I hope they find a cure soon...God Bless you all!

Melissa - posted on 03/15/2013

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Hi ....my daughter has alopecia too....she had her first spots at age 3 and was so bad a year ago that top of her head was almost all gone becuz of big spots .....I feel helpless too but I must give god praise becuz for the first time in two years we didn't have to use cream last 2wk round and so far not yet on this round....I pray that your daughter knows she is beautiful no matter her hair or not ....God blesss you

Dawn - posted on 10/10/2012

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Hi. This is the first time I have ever entered into a chat forum. My beautiful daughter is almost 14. She has alopecia. She has been losing her hair since she was 7. It grew back when she was 9 and has been falling out again slowly since then. She now never lets me see it. Tonight she wouldn't let me say good night until she had put the light out, as she had gone to bed. It hurt, so I had another glass of red wine! It hurt a lot. Does anyone else feel like this? Dawn.

Robin - posted on 01/02/2012

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My son started balding in october. I noticed his hair startded thinning. At this point he had grown his hair into like a skater cut... a little long on his shoulders. Well just the left side of his head was thinning. I cried so hard. I never even heard of this till now. In a matter of two months it has spread to the right side of his head and now attacking the hair that was long on his shoulders. This all breaks my heart so bad. He has three inches of hair left that it hasn't affected yet bit its gettin there. Luckily I talkd to the prinicipal and his school allows him to wear a hat. He only takes his hat off at home. This last three months is the first time I've dealt w this so its new to me. But if its ginna grow bak its gunnahappen on its own. I ain't gunna harm my son by tryin out techniques that don't really work anyway. We can just take it day by day.

Andrea - posted on 02/26/2011

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Hi, My 7 year old daughter has AA..It's getting worse!! bald spots and thinning all over. We went to a dermatologist who suggest we do a treatment called DNCB.. Has anyone heard of or done this treatment on there child???? I don't know what to do?? i feel hopeless at this point...

Desirae - posted on 12/29/2010

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I come from a family with way too much hair... same on my husbands side. Nevertheless, out little girl (age 7) has just been diagnosed with this and given drops, which are working... there is already regrowth, but new spots appearing at the same time. She is adamant about hiding it and has come home teased from school once already. What do you say to your children when they are teased?

Melissa - posted on 01/31/2010

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when my son was diagnosed we found out that my cousin had it at the same age as him (4yrs old) and that they advised my aunt is what due to hyperactivity so they changed her diet and her hair grew back...we've done that and nothing he's actually losing more hair. so for us it was in our family

Melissa - posted on 01/31/2010

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my son was diagnosed with Alopecia Aerata at 4 yrs old and he has a about 4in round circle back-center of his head and he's losing more spots around the base of his head..Like everyone else I'm going crazy looking for something to fix it...I'm going to be trying Rene Furterer line (sold in Saphora) I read on Earthclinic.com that am women tried the french line on her daughter and her hair grew back....I will keep everyone posted as to if it works....I did do the steriod cream as prescribed by the dermatologist but we stopped his head would get raw...I'm also researching the possability of maybe changing out foods in his diet to that of the ADHD diet I've heard on a couple of sites that it works...PLEASE LET ME KNOW WHAT EVERYONE HAS TRIED

Shawna - posted on 07/08/2009

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My 3 year old was diagnosed 1 1/2 years ago. She had some regrowth, but it just all came out again. We are seeing a specialist at Sick Kids Hospital, but there is really not much that can be done. She is starting school this year, and I am really nervous about how the other kids are going to treat her. Right now she is a normal three year old, and it doesn't seem to affect her... she knows she's beautiful no matter what.

Helen - posted on 06/17/2009

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I do not have family members with AA but my husband's cousin has it. He got it when he was around 17. He only ever lost a spot or two. Very small though, He kept his hair long so no one would notice.



My daughter doesn't go to the doctors anymore either. I give her natural vitamins and immune boosters to keep her healthy. They tend to help.

Francine - posted on 05/22/2009

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Hi all,
I have a 4 yr old dd with alopecia areata. She still has about a 1/2 head of hair. and losing.... I have joined a group called Children's Alopecia Project. (CAP). This is the only organization solely geared towards children. the meetings have a psycologist and he interacts with them. Their mission is to have these kids grow up with a strong sense of self. To help raise/ keep their self esteem high.

I do think it's the parents that suffer the most. We worry about our kids. Sometimes, I am watching other people as we walk to see if they are staring and wondering, but other times i don't even notice or care.

It is very difficult to understand. I think I am a little at peace now, because I believe all of her hair will fall out. I just wanted it to do one thing and be done. The hardest thing to cope with is when it falls out and grows completely back only to have that patch and more fall out. Education is key.

We decided not to go to any more Dr.s because as we all know, they cannot help/cure this. Why waste your money.

I keep hearing that once they find a cure for juvinele diabetes, there will be a cure for AA.

Does anyone have family members with AA? We do not. We have family with eczema.,allergies, asthma and MS.

Lyndsey - posted on 04/29/2009

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My 3 year old daughter Cadence was born with Alopecia Totalis. She has a few eyelashes and eyebrows but no hair any where else on her body. The doctors said that they didn't know anyone born with it. She was seeing a specilist for a year but they didn't do anything. Basically they said that she's got no hair folicles and there's nothing they can do, so come back in a few years when she wants a wig. I was gutted because all I could picture was Cadence growing up, going to school and being picked on. Luckily the kids at her school are used to her so she's got lot's of friends and seems very happy. I still worry about her but I won't make a big deal out of it because I don't want her to think it's something to be ashamed of. She has told me she want's me to buy her a black wig but won't wear it because she says it itches. When she meets anyone new she tells them, My name is Cadence, you have hair and I have a head. It usually breaks the ice. I find that it's the adults that judge her more. The kids just say oh you've got no hair and then start playing with her.

Helen - posted on 03/29/2009

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Hi Lonnie, it is definitely hard to deal with especially the first time.  I took my daughter to a specialist at Sunnybrook Hospital where she had treatments for a year.  Unfortunately, we stopped them because it had side effects.  They were treating her head with a topical medication.  They can also give steroids injections but that is too painful for young children.  With the treatment my daughter Victoria was getting, she would have to have her head covered for 24 hours afterwards.  No sunlight.  If sunlight did somehow come into contact with an area that was treated she would get blisters.  Also after treatments her head would get hot and very itchy.  She would not put the lotion on that the doctor gave her because she knew it would counteract the treatment.



Apparently, alot of research is being done but they still really do not know why this happens.  They say it is an immune system illness.  You can get some great information fron the National Areata Alopecia Foundation.  They also have a 9 minute dvd " why my hair falls out" that you can watch with the family and share with friends.  We used it for a discussion in my daughter's class.  We also gave a copy to the school so they could show it during health class so that the children would know what it was.



The children at her school have been really good about it.  She has never been teased.  However, she is going to middle school next year and I fear the worst.



I t hink the one good thing I did was let my daughter decide how she wanted to go about treating  her illness.  It gave her the feeling that she was in charge of something even if she couldn't stop her hair from falling out. She chose to stop the hospital treatments and take vitamins and natural supplements to boost her immune system.



I am just thankful that everytime it falls out, it does eventually grow back in.  Some peoples hair never comes back.  I am trying to keep positive about it.



We met a young lady about 2 years ago who said she looked exactly like my daughter at her age.  Which was 10 years old.  My daughter had no hair anywhere.  She lost it all.  Eyebrows, eyelashes, legs, arms, etc.  The young lady said that once she had finished maturing it pretty much stopped altogether.  She said she only loses a small spot here and there now but she had a full head of thick, dark, gorgeous hair.  So there is hope.  My daughter and I joked about how much money some people spend to get rid of body hair.  It is quite funny if you think about it.



Lonnie, I encourage you to be strong for yourself, family, and son.  It is not the end of the world even though it may seem like it is.  Try to stay positive.  At least it is not life threatening. I have to keep reminding myself of this.  I know exactly how you feel.  Everytime I talk about it, I still get very emotional.  My eyes are watering now as I think about my daughter and your little boy.



Please keep in touch and let me know how things are going.



Helen

Lonnie - posted on 03/03/2009

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My son was diagnosed 3 months ago.. So this is all fairly new to me. I have so many mixed emotions about it that I can't even pin point just one feeling. Everytime I think or talk about it I cry - We're taking my son today to see a second doctor and on April 1st to get a 3rd opinion. It started out with just a small patch and now its taken over almost the whole bottom right side of his head. When you mention helpless..I definitely can understand and relate. The fact that there is no warning or some way to prevent this from happening again and again is heartbreaking for me and very hard to understand. I've been doing  alot of reading and I just can't believe this is happening at all -

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