Alopecia World
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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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Replies to This Discussion
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Permalink Reply by Cori on
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It's very confusing. I want to believe the treatments help and they could be she getting some fuzz on top. But I also don't want her miserable. She's always been so healthy, she never been terribly sick so going to the doctor so much has been rough. Thank you so much for the support.
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Permalink Reply by Fidgety on
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Only you can decide what is right for her. You aren't alone but the best thing I found for me was to stop stressing. Like yours mine is perfectly healthy and happy also confident even bald and that is paramount. When she is older iffy daughter wants some treatment then we will try. At the specialist he told me nothing was wrong with her just that she lacked vitamin D3 as a result of a blood test now she takes a supplement. The diet could help. Good luck .
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Permalink Reply by JEANETTE on
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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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MY DAUGHTER JAZZLYN~MADE SIMILAR FACE AFTER SEEING HERSELF IN MIRROR FIRST TIME, AND THAT WAS 8 MONTHS BAK...CONFIDENCE BUILDING ..AND HELPING HER TO LOVE HER FOR HERSELF TO BE SECURE OF WHO SHE IS!!
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Again thank you so much for the advice and support. And all the beautiful pictures. She's still self conscious but it's still new to her. This fall out stage wasn't as bad as the last one. She still blames me since I'm the one who does her hair.
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Awww, Im sorry to hear that and as a mom that went thru the same it hurts! To see them looking at you as if your to blame. However, by her looking at photos of other children and letting her know in her language(3-4) she is sick, and this is why your hair is falling. My daughter couldnt comprehend the word illness, but as a child understands what sick means. It will take awhile for her to understand but its all on you to stay strong and creative while helping her accept it. Sending you huggs and kisses to your babygirl, filled with many blessings!
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This is meant for everyone not just Cori. You can write how amazing it is for your kid to love who they are and be comfortable in their own skin as AA does not have a cure and go on, and on. These are all great life lessons. However do the research put it together and change your kids diet. This is not an invasive treatment. How badly do you want your kid to have hair?
The real debate is what triggers Alopecia, as it seems we know what inflames it. Don't just give up and say there is nothing you can do. Is there anyone that has tried a gluten/dairy free/anti inflammatory diet that has not yielded results? I have had only one person claim this, and I'm not sure if they were legit with their diet. So if there is anyone out there that has tried this and it not worked please contact me. Legit diet though 100% no cheaters for at least a year.
Even if the diet is scientifically un-proven it can't hurt your kid to stay away from processed foods, and gluten, dairy products. Stop buying wigs and start shopping healthy.
It's like my post and JAD's post are invisible here!!! Good Lord...
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Permalink Reply by Dena on
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I am one of those people who tried gluten/dairy free/anti inflammatory diet with my child and didn't see any results. We were actually semi following this diet when she lost her hair and changed to a very strict routine once she started losing large amounts of hair. And before you say we didn't stick with it long enough or we weren't following it closely. We were on it over a year, with a dietician overseeing her diet and had absolutely no growth. I understand that it does help some people, but so does injections, creams, and steroids for some people. Alopecia reacts different in people. Some people lose hair and get it back. Some never grow it back. Some have success (sometimes only temporary) with treatments. I really don't appreciate the guilt trip. I don't know a parent out there that wouldn't move mountains to help their children get their hair back.
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Permalink Reply by H's Mum on
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I agree with you. After a year of losing her hair (80%) and no effective treatment from health professionals I put my daughter on the GAPS diet, having done a lot of my own research into AA/diet. AA and celiac disease were often seen together - so we got a blood test for H, which actually came back negative. OK we thought, let's give the GAPS diet a try anyway as we have nothing to lose. That was last September, and after three weeks her hair started to grow back 100%. After a series of (necessary) injections in March, H has developed 4/5 tiny bald circles on her head, but there are signs of regrowth on one of these patches now. Our diet is grain free, sugar free, lactose free (you can still have certain hard cheese and fermented yogurt), no processed foods - just fresh, healthy food. What is so bad about that, and why such negative comments? The GAPS diet isn't an instant fix, typically you are on it for 18 months before the gut heals, and after that it's a life-long change. It may not work for everyone, but then I don't know a treatment for any condition that can claim 100% success.
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H's Mum...I don't have a problem with the GAPS diet. I have a friend who has gotten her health back because of this diet. That was one of our main reasons for giving it a go. Unfortunately it wasn't the answer for my daughter. Diet is very important to us. It was before Alopecia and continues to be. We eat about 80% vegetarian, no milk, and little to no processed foods. Health wise my daughter blood work is perfect, so I would never tell a parent to not worry about what they are feeding their kids. I don't regret trying this diet and would probably tell someone it was worth giving it a try. What upset me was the comment by athenasdad, "How badly do you want your child to have hair? Don't just sit and give up and say there is nothing you can do." Trust me, I don't know of a parent who has just given up. Comments like that make it sound like we are to selfish to try something hard. Going through the treatments was hard on my daughter and when she said she was done, I thought I needed to respect her wishes. She went through all the painful treatments and diets, and decided enough was enough. I felt I needed to respect what she wanted. The same way I would take her back to the Doctor if she decides she wants to try again. Every parent I have talked to who has a child with Alopecia, has a tremendous amount of unwarranted guilt. I just feel it is a personal decision when it comes to how we handle it and I shouldn't have to feel guilty about it. My daughter is happy and I couldn't ask for anything more.
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I don't think anyone goes on this site to guilt-trip people intentionally - I think we just want to help each other. I joined up because I was so frustrated with the lack of help I received from medical professionals. When comments get posted, maybe they can be open to misinterpretation or not conveyed in the best way. I think you are right in saying your daughter's wishes were the most important factor in all this- that's what we all have to remember. Very best wishes to you and your daughter.
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