Three years old and miserable

In January I brushed my daughters hair and it started coming out in clumps. After four months, three doctors and blood test we were told it was alopecia aerta. Her baldness bothers everyone else more then her. She had super long curly hair. I wrap a scarf of hat on her to protect her scalp from the sun but it doesn't bother us or her. But her treatments are making her itch all the time and leaving welts and blisters. She so miserable for two weeks after her treatments . I really don't know what to do.

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Permalink Reply by Renee on May 11, 2014 at 4:36pm

Letting her head get some sun may actually help!  It's the same as the PUVA treatments that cost $$$ at the Dr.  The sun is free.

Permalink Reply by Cori on May 12, 2014 at 2:35am
Today was heartbreaking. We don't really have low mirrors or spend a lot of time in front of them. I guess today she saw herself for the first time. She grabbed her head and said she couldn't look at her and refused to open her eyes until I put her down. Then her uncle kept making jokes about. He meant well, trying to lighten the mood I guess. Then while playing in the sprinkler with her water hat fell off and her cousin kept telling she doesn't have hair and needs her hat. She was being protective of her baby cousin but still it was a gut wrenching day.
Permalink Reply by JEANETTE on May 14, 2014 at 2:34pm

Dear CORI,

 

My name is Jeanette, let me share a PARENT'S... Fears, My Concerns, My Worries, My Knowledge, My Power and Strength, OutShined and Overwhelmed By my 5 year old Daughters Resilience, Endurance & Perseverance

 

I can sincerely understand how this can be so difficult and hoping and wishing for results but all these other moms are correct in advising you the "Fact" that there is no "Cure" for alopecia! Dr, can recommend and make promises but in the end like myself as a single mom that dealt with my 5 year old loosing what was the longest hair for a child her age was unacceptable for her,

 

WORSE..... is if mom feels same way! You have to show her she is SOOOO much more than her hair!! Her presence alone is a blessing! Her health! And most important of all you are her :"Boost of Confidence~Her Cheerleader" Life goes on!! You have to build on her confidence and strength especially now soo young to deal with whats ahead the best way for her to face anything is to arm her with educating her with her illness, and as time goes on she will repeat those same words to kids and strangers when they ask!!

 

My daughter is 5 years old and she tells them straight out, "I have ALOPECIA"with confidence n full of life! Where at one point i felt hoplessness my daughter was able to recover quicker with her "Resilience" and its because i may have cried over the loss of her hair and difficult times to come but over joyed with happiness still having her by my side! Remember that during the difficult moments!

 

There was a time i made it a point to make sure i get inside her head but how..she is soooo young so i started off with a huge colorful chart of Happy Faces, but other faces that showed feelings of fear, sadness, crying, all types of emotions. I asked my daughter use or point out which face your feeling today?! One night she posted the face representing fear/scared and i sat beside her and asked y? She said "Mommie, i dont want my hair to all leave, i will miss it! I will look like a monster! Ugly? How will kids know im a GIRL!? Im SOO SCARED>>>as i held her tightly and cried without her noticing ofcourse, but hearing that broke my heart!

 

You need to bring an understanding to a child her age, in a way they can understand! So, i replied with? Do you think your fun? Do you still get mad when you dont get your way? she said yes? Do you still love desserts over dinner she said ofcourse mommy! and so, on as silly as it sounds, but told her loosing your hair is not going to change any of those things! YOU ARE WHO YOU ARE, AND PEOPLE WILL ALWAYS BE HERE FOR YOU AND LOVE YOU TWICE AS MUCH! AFTER THAT NIGHT!!....SHE WASNT AS SCARED! SHE DID FEAR BEING BALD BECAUSE ID PEAK IN BATHROOM AND WATCHED HER LOOKING INTO THE MIRROR,...THOSE LITTLE THINGS YOU HAVE TO CATCH, TICKLE HER TUMMY AND POINT INTO THE MIRROR, THATS THE SMILE PEOPLE WILL WANT TO ALWAYS SEE FROM YOU AS A FRIEND, NOT SADNESS!!

At 3 years old i had my daughter in this pre school talent show they had for preschoolers as a way to boost their confidence and she had that energy because i showed her other kids doing talet shows that its more fun than it is scary..She was doing it til she hit 5! At 5 because of what was happending to her she didnt want to do anything but sit around depressed! The light from my babygirls eyes disappeared!" That is what hurt me most not loosing her hair but watching her give into it and "LOOSING HER SPIRIT!!"!!

 

After spending months of emails, letters, and blogs a single mother without the funds of being able to afford a wig and making all these treatment copays, meds,etc...Dr's listings of false hopes but filled pockets of my hard earned money and getting no where fast angered me!

 

Worse, it was harming my child, and if it was making her ill or pain in any way it wasnt worth using, just because i wanted to see her with hair again!! Remember, their are no guarentees, IN THE END THEY USE HER AS A GUINNI PIG of never ending experiments! I met a 20yr old that over 15yrs of testing, trials, shots and meds, that didnt work and that is because her mother wanted her daughters hair bak desperately, but child was week, tired, in pain and angerd, because shots to the head as painful as they were the headaches worsned and hair came and fell off constantly, the daughter was at the point of yelling and crying to mom to "STOP" she no longer cares for hair!! However, her mother was still trying to convince her their may be possibilities, because dr's say soo....Lets just say daughter and mom no longer speak! She decided to live with her father..Hearing other stories and peoples success or failures, allow us to learn and grow and learn points that will help any parent dealing with their childrens ALOPECIA!!

I was blessed with a Dr. that did advise me of a club for kids wigs, for free! I thought ok i have to make sure to get it before the first day of school!! I did i finally got it...but with that being said, "I also made a conscience decision to send my daughter to school without the wig!" Yes after spending months trying to beat the clock for her first day of school i realized that she is beautiful no matter what she wears, why should a wig be any different?!  Why would i force on my daughter what society finds acceptable and what isnt!? Just because people say so? I will be honest, everyone including my mom was against me on this one!

 

My childs father also, repremanded me for not sending her with the wig to school! I was afraid of it falling off and children being scared and uncomfortable and making her feel the same. So, i sent her to school with no wig and spoke with her everynight about her condition and she isnt the only child with issues.

I WANTED MY DAUGHTER TO LEARN THIS MESSAGE EARLY!! """LOVE YOURSELF FIRST, FULLY AND COMPLETELY ACCEPT YOURSELF FOR WHO YOU ARE, AND WHAT ILLNESS YOUR DEALING WITH, WITHOUT WORRYING ABOUT WHO WILL OR WONT ACCEPT YOU!"" NOT HAVING HER DEPEND ON A WIG!!

"""AMAZINGLY SHE DID WITH GODS BLESSINGS!!""

It helps if you introduce to your child someone else with a worse issue. My friend was a young girl wit no hands and legs. Advised my daughter you may bot have hair but you can run n play, where this other young girl could not!

 

Thru a childs eyes she understood the message i was tryin to put across with "IMAGES" I also showed her models that are BALD and beutiful! I showed her she can still do what she loves, be the center of the stage!

 

What i saw was the "LIGHT & LIFE" come bak into her eyes! Now she has more confidence than any of the girls in her Kindergarten class. What i did the moment the last of her hair fell out! I brought her to MACYS, makeup chair and let them beautify her with natural earthy tones, to make her feel beautiful again! "and SHE DID!"

 

She just did a documentry for the Alopecia Foundation, and is full of life and doesnt care what others think! I always did as a child and hurt myself in a million ways but my daughter was my 2nd chance in raising her right! Letting her know we all have purpose in this life, and that is guided by STRENGTH & Knowledge!! She is an "AMAZING LITTLE GIRL!" Im happy to say there are days she is more comfortable without her wig than she is on days with wig! I allow her to make the choice of putting it on or not! She is happier that way!

 

 

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Permalink Reply by Nikki on May 12, 2014 at 9:42am

Our son Cale has had Alopecia Universalis since he was 2 years old. He is now 4 and we have done no treatments at this time.  If he decides to try treatments later in his life that will be his choice but for now we are not. I wish you the best in your journey and find acceptance in your child having Alopecia. God bless :)

Permalink Reply by Nikki on May 13, 2014 at 3:21pm

Thank you Aimee!!!

Permalink Reply by Aponi HF on May 12, 2014 at 3:45pm

I'm so sad to read this, alopecia touchs any kind of age. It can be healed if treated earlier ( with a very small possibility). I know this will be so hard for a child, if me adulte and have difficulties accepting it, how a child would feel about this :( .

It might be good to make her grow strong, making her accepte her self, we are beautiful with or with ou hairs.

I wish all the best for your child, and I hope it will heal, if not, to live a happy child .God bless her :) 

Permalink Reply by athenasdad on May 12, 2014 at 10:13pm
So here is the deal. This is a inflammatory disease. Check out the studies being done at Columbia University in NYC. Here is the link
http://techventures.columbia.edu/blog/profile/dr-angela-christiano-....
This is ground zero for AA, AU, research. If your unaware of this research by Dr Christiano then you are very welcome.

With that being said Alopecia, Celiac, and Rheumatoid Arthritis are caused by the same gene. So relief for Celiac is Diet and Diet only. Diet has also been found to give Relief with Arthritis. You see where I'm going with this.

Gluten/dairy free diet with a probiotic supplement and good multi Vitamen regiment daily is your answer. My daughter was diagnosed at age 1 with AA, it quickly progressed to AU. We gave her a heavy dose of predisolone which is an anti inflammatory by the way. It kick started her growth, but the drugs will only last for a little while. So the diet was the next phase to maintain healthy growth. She has grown about 90% of her hair back.

I understand people not wanting to put their kids through any kind of drug treatments or injections. I don't think you have to, I just think you will see results faster. It annoys me to no end when people post and say there is no hope and just let your kid be themselves. No, how about stop feeding your kid processed food and gluten filled products. Here is a little link to explain Gluten and why it's not a problem for some and a big problem for others.
http://youtu.be/p6CK_QlagWA

It can't hurt your kid or yourself to try a diet approach. It's not easy, especially for a young child, but it's a lot easier compared to 20 yrs ago. There are plenty of products now a days to make it work. Treat it like poison that seems to help us, because that's exactly what processed food is, it's f'n poison. If you have any questions please feel free to contact me directly.
Permalink Reply by Jason on May 27, 2014 at 11:19pm

Thanks for your post, I truly appreciate your honesty and totally agree with your viewpoint that it is all rooted in the gut. Can you please share your email with me? I would love to chat on email if possible. You can send it to me on here, message it to me, or send me an email directly at Jparker1178@yahoo.com. Thanks so much, I really appreciate the help.

J 

Permalink Reply by madhu on May 12, 2014 at 10:40pm
Hi cori,
Ur baby is an adorable kid. I remember taking my daughter for a haircut when she was 3 yrs old cos her hair was falling uncontrollably. We had to trim it as close as possible. To date she thinks we cut her hair and that's why it didn grow back. It hurts, but what to do. Over the years many kids have thought she was a boy and teased her abt her bald spots. I wanted to jump in and shield her, but I equipped her with knowledge about the condition so that she can stand up for herself and explain the facts.
We also have changed her diet to include more gluten free items ( though not 100% ).
Our kids will believe what we tell them abt themselves. Teaching our kids abt inner beauty and confidence will help them succeed.
Take care
Madhu
Permalink Reply by Cori on May 13, 2014 at 5:11am
We've been talking about changing her diet. I think everyone would benefit from it. I've also started wearing scarfs and turbans with her. She likes it when mommy looks like her. She's been so self conscious lately and it's been breaking my heart . We thought about cutting the back of her hair to prevent tangles but she doesn't want too.
Permalink Reply by Fidgety on May 13, 2014 at 3:18pm

I have a 7 year old and we are on the third cycle of Alpecia Areata.   I have never applied any treatment because she was so young.  I didn't want to subject her to that.   She has had AA since 9 months old when those first patches appeared.    I am afraid that it will be you that worries more about it than she does at that age.  I remember all the staring and being upset over her beautiful curls falling out and those patches ..... oh how I hate those patches.   At 3 she and other kids don't pay much attention, they are quite oblivious to it.   It kicks in when they are older and it starts again.  My daughter is fully aware of it now.  She wears hats, scarves or nothing.  As she sees fit.    You have to learn to live with it.   You just want to wrap them up and find a "cure", but the hair will do what it wants to do when it wants to do it.    My daughter has just decided she wants a wig.  Her classmates don't really bother any more, they have seen her with no hair when she was 3, so this time round it isn't so new.  I am more relaxed too.   She want's princess hair, but she will get that when we find the best wig.   She knows that she can wear the wig if she wants, she is in charge of her own hair.   I say chill out.  Relax and accept.   She's too young.   She's healthy isn't she, then that is the main thing.   Good luck

Permalink Reply by Rose Marie' on May 13, 2014 at 8:57pm

Hi 

This decision is so very personal and one that only your family can make.  Opinion can help to educate but it also can cause confusion and guilt over whatever you and your family decide to do.  Know from the bottom of my heart I support you and your choice no matter which way you go.

I'm just going to also pass on my experience.

My daughter lost her hair at 12 years old.  She regrew and lost her hair 6 times in the following 10 years.  On two occasions she grew back 97% of her hair.  The other times it was more like 70/80%.  During those ten years we never used medications or treatments.  My experience showed me that alopecia does what it wants when it wants.  If I had been trying a medication or treatment during those years I'm sure I would have credited it with the hairgrowth... as we didn't use any I fully understand how precarious and precocious this condition is.  Remission for children is very very common.  So, don't loose hope.  

Hugs

Rosy

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