Developing alopecia at a young age

My beautiful baby girl developed alopecia at 8 months of age. At first, doctors passed it off as normal infant hair loss, because it fell out, not in patches, but diffusely. We, and the doctors, became more suspicious when she continued to lose her eyebrows. She then developed excema, and terrible patches around her eyes, which she would rub constantly. One day, I noticed that she no longer had eyelashes on one side's lower lash line. She was finally diagnosed with alopecia totalis about a year later. This was then downgraded to alpecia areata, because another professional noticed that she is able to develop peach fuzz (it happens on and off throughout the year, although I've only ever noticed one real, pigmented hair form). We were told that her chances of regrowth were next to nothing, because she'd develped the disorder at such a young age. We were also told that our only option was steroid injections when she's about 8 years old, which I've heard are painful. I also have an issue with injecting a child's system with steriods. I'm just not confident that there won't be side effects down the road. So, about 6 months ago, we switched gears. We began to see a naturopath who took a long look at her allergies and sensitivities. He found, through testing, that she has a good deal of sensitivities to certain food groups and molds, and that she has a dairy allergy (which brings on the excema). Since then, we've paid closer attention to her diet and environment, and have begun to give her a supplement called sterol - which is a natural immune system balancer - because her immune system was in overdrive with all these allergies etc. Over the past 2 months, her eyebrows have returned fully, I've noticed her eyelashes starting to grow back...v-e-r-y slowly, and she has peach fuzz all over her head!

I know enough about alopecia to not get too excited and to know that this might all change tomorrow, but it's encouraging, anyway. Like I've said in my profile - hair or no hair, this little girl shines, and she just accepts that she doesn't have hair like other people. It's not an issue. Not to say it won't be someday, but for now, we have the chance to build up her self confidence day by day. I really wish you could all meet her. She's lovely! Her big sister is very proud, and very protective about her. Isley, who is 5, is the first to speak up and give people a lesson in alopecia awareness when someone mistakenly says "Well, there's a cute little guy!" to which Isley will reply "Actually, that's my sister and she's a girl. She just doesn't have hair because she has alopecia. Do you know what that is?" It's pretty cool to see.

I'd love to hear from other parents of children, or from individuals who've had alopecia from infancy/toddlerhood. It's hard to find others who are going through the same parenting issues at the same time, specific to a young child with alopecia.

Take care all. Hope to hear from some of you.

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Permalink Reply by Hayley on March 8, 2008 at 7:47pm
hi there Janna..
i had Alopecia as a child..i didn't have much hair till i was about 5! I also had excema,and sore eyes...from rubbing..but didnt lose my eyelashes.
I had a lovely head of hair all through my teens..............................it grew back like you wouldn't believe!!
I just want to say to you that my mum says that the worst thing is feeling helpless......i never knew she felt like that till i lost my hair all these years later..xx
It's great she has her sister in her corner,and we can educate the children of todayxx
BIG HUGS MUMxxxxxxx
Permalink Reply by Janna on March 8, 2008 at 10:42pm
Hayley,

I completely relate to your mom! There have been nights where all that I can see is every opportunity for teasing or bullying 5 - 10 - 15 years down the road, and I've doubted my ability to equip her to deal with it. And I've felt utterly helpless and heatbroken...not because she has alopecia, but because I know that she'll meet with hurdles and potholes and I won't always be able to come to the rescue. It's also hard as the mom to filter out the 'friendly advice' from people who insist that we send her to a montessori school, or homeschool her, or 'teach her to wear a wig'. I so desparately want to raise her with enough confidence that she can choose to wear a wig like she chooses to wear a pair of earrings, or a skirt. I hope that she'll see herself, as is, as whole, and her future wigs (she's being sponsered...already!...by Children With Hairloss in the US. I applied early thinking there'd be a 5 year waitlist, but they got her set right up!) as a way to accessorize and to express the way she's feeling that day.

I'm learning, day by day. And those moments of helplessness come and go. I had a friend who, when I was feeling low, told me "God doesn't make mistakes. Often the people who are obviously different can make the biggest impact on those around them. She's going to do great things in her life." And I agree. She's a neat kid. Both the girls are.

Thanks for taking the time to write to me, to let me know that I'm not alone in my feelings.

Big hugs right back atcha!

Janna
Permalink Reply by ciearap6 on February 9, 2015 at 1:42pm

I can so relate to your message above. I have the very same worry for my 4 year old little girl. I don't so much worry about the now as I do the later. What will the school age children say to her? What will she say back to them? I won't be there to rescue her and that pains me! But I'm going to adapt to your quote. I like the "God doesn't make mistakes" line from above! He knows what he is doing. I must be strong and supportive of my baby!

 

Cieara

Permalink Reply by Alex on March 9, 2008 at 12:59pm
Hi Janna! I've had alopecia for as long as i can remember, since i was about 4. when i was first diagnosed, my mother went to a local AA support group meeting. they told her about their experiences and how they dealth with alopecia. the group leader told her to go out and try every treatment that was available at the time, and if and when none of them worked to come back to the meeting and they would all be there for support.

as everyone had suggested, my mom tried every lotion, injection, creams, diets, ect. that could possibly help. nothing did. the people at the group kept telling my mother how important it was to teach me that i was beautiful with or without hair. they told her the importance of having self-confidence always.

obviously, you already know and have been working on your daughters confidence. i think thats great! keep it up, she will need to know that she is always beautiful, even if she is bald. as she gets older, this will be vital to her development as a confident and beautiful woman.

now, i am 17 years old, completely bald, and i know that i am beautiful. i am a junior in high school and i am involved in many activities that many others my age (that ive met with alopecia) are too shy/ embarassed to do. i play basketball, golf, and am the president of the national honors society. without the confidence my mother instilled in me when i was younger, none of these accomplishments would be possible.

i do have a beautiful wig that i do wear on occasions. every once in a while, i have one of those days when i dont feel pretty (but who doesnt), and it gives me a boost of confidence. most of the time, however, i go bald. to be honest, its too much work for me to deal with doing my hair all the time. =)

i know you will give your daughter the confidence and other essencial values she will need growing up. i hope that this helped you in some way. feel free to ask me any more questions, ect. that you may have!!
Permalink Reply by kastababy on March 9, 2008 at 1:35pm
Hi there Janna!

My mother first started noticing my hair loss at around age 4. Previous to that, I was bald as an infant, but when my hair did grow in (at around age 2) it was full and long and wavy. I never had eczema like some of the people on this site have reported. My mother first noticed a smooth spot in the back of my head about the size of a dime when I was about 4 years old as she was getting me ready for school one morning. She checked all the combs and brushes, my pillow, and removed all the scissors from the house because she thought maybe I had cut a plug out of my head. The next week, she found two more spots the size of quarters and it was then that we started going to doctor after doctor, hospital after hospital. We started out at Park View (now Centennial) Hospital in Nashville, TN with Dr. Hamilton, who started me on steroid creams. They worked for about 6-8 weeks and then stopped. Then we went to Meharry Medical College and saw Dr. Johnson, who honestly had no idea what was going on. When I was about age 6, we finally went to Vanderbilt University Medical Center and saw Dr. Dana Latour, who was the doctor who officially diagnosed me with AA. We tried countless conventional treatments, but in 1985, those treatments were very few and largely ineffective.

I started wearing wigs when I was about 6, because by that time my hair had completely fallen out. I had two sisters at the time, one who was 4 and the other a year old, and my 4-year-old sister was extremely protective of me, fighting all the bullies who wanted to pick on me because I was different and chasing away anyone who only wanted to be my friend so they could poke and prod on me like I was a specimen of some sort.

My hair also grew back as a teenager; from the time I was 13 until just before I turned 17, when it all started falling out again. I think sometimes emotional trauma can be a trigger for alopecia to start with, because my hair started falling out about the time my grandmother and my great-aunt (they were sisters) died. It fell out completely and I was bald throughout college, until I was about 20. It grew back in and fell out again when I was 21, and fell out again when my father died suddenly when I was 23. My hair has been pretty much gone ever since.

I probably got the biggest support of all from my father, who loved me unconditionally and taught me more about acceptance than anyone I have ever known. Where my mother and my grandmother always insisted that I keep my head covered, like my alopecia was something to be ashamed of, my father never insisted on my covering my head, and told me if I wanted to leave my head uncovered and bald then to go ahead and do it. Your little girl will learn the most about acceptance and love from her father, and the way he treats her now during her formative years will leave a lifelong impression about how men should treat her when she is dating and in a serious relationship too. The main reason I am not married now is despite all the relationships I have been in, I have not met anyone who even comes close to loving me and accepting me the way my daddy did.

I hope my story gives you some insight on how to raise a child with alopecia. I like to think that I am a well-adjusted, normal adult who has made it her life's work to educate others about alopecia. I have my good days and bad days, but being on this site and being able to share my story with others has made a VERY good day for me so far!!!
Permalink Reply by Maria, Mia's Mom on March 9, 2008 at 4:08pm
Hi Janna
My name is Maria from NY. My daughter was diagnosed with alopecia almost a year ago when she was almost 3yrs. I was looking at your daughters Pictures and the way her grows remind me of my daughter at that age and makes me wonder if she may have had a form of AA then...She had very little hair until she was 2 and also suffered with bad cradle cap. Then all of a sudden she grew such beautiful curly hair. Then within a year the alopecia started and with 6 months of noticing the first patch she lost almost all her hair and eyelashes on 1 eye..We can only hope by the time our daughters are a bit older there will be a cure...Stay strong..ITS the hardest thing to do
Permalink Reply by Laura Duksta on March 10, 2008 at 7:59pm
I'm sure she is absolutely beautiful! And how great her big sister is being...its actually quite an opportunity that will probably have a significant impact on her future or both of their futures. I am clear that every situation we are presented with in life has its challenges and drawbacks but there are, if you are willing to look for them, an equal amount of blessings and benefits. When you begin to find them your energy around the situation changes from one of "theres something wrong here" to a more empowered place where right actin can occur.

I believe 100% that there are other alternatives than steriod injections to help reverse the hairloss and eventually fully restore the body to its natural, healthy state. I personally do believe that it is stress triggered and stress is relative and often hard to pinpoint in adults and childen. Stress can be allergies...that our system is taking in something that does not agree with it and it is causing a stress on the body. Though, You Can Heal Your Life by Louise Hay says that food, element allergies are typically triggered as a reaction to some "one" and it manifests as an allergy to something. You may want to pick up her book or there is a new movie out that you can watch on your computer at www.YouCanHealYourLife.com. I had just moved from my beloved ocean to the country, my dad was an alcoholic, I had gotten my first bad grade...it is hard to say what stress might trigger it.
I believe that working with a nutritionist, perhaps a chiropractor or some sort of body/energy worker, yoga...deep, breathing is key are all helpful! And I also found for myself taking fruit and vegetable supplements (Juice Plus...they have a childrens test study going on-let me know if you want more info) and I was drinking Xango for a while...one of the products that is made from the mangosteen fruit...after almost 30 years of having no hair my hair seems to be growing back---though I am using my power of intention to keep it from happening...I have gotten quite used to being The Bald Chick and don't think I want to return to the days of styling, primping and now that I am almost 40 coloring?!?!
I have also gotten in the habit from Yoga of standing on my head...a practice your kids would probably find fun! And I think there is a real power in sending the blood and breathing to the head.
I know this is getting very long...but I will also share because I don't think I've seen it here yet a story that is repeated sometimes in the NAAF newsletter: A father takes his son to the doctor and the doctor says, "Congratulations your son has Alopecia" The father looks perplexed and the doctor responds, "there may not be much we can do about it, but I have never met a child with Alopecia who doesn't turn out to be an extraordianry human being!"
I paraphrased a bit there...but that was the jist and I can tell from your share that all of you are learning great lessons and you are doing the best thing for her in helping her to maintain her self-esteem and beauty!
Have a bright and blessed lifetime! Sending you lots of love, stregth and laughter!
Keep Shining!
Laura
Permalink Reply by Maria, Mia's Mom on March 10, 2008 at 9:44pm
Hi Laura,
your post very interesting...I am currently given my daughter vitamins in hope that this will help..I am interested in finding out more about the juice plus childrens test study going on. can you please email me some info. How do you feel about seeing some hair growth after all this time? Is it exciting...?
Thanks for the words of encouragement
Maria
Permalink Reply by Laura Duksta on March 11, 2008 at 11:13pm
Hello Maria...
Please feel free to call my trainer Terrence Thomas...he is an amzing nutritionist, energy healer and more.
info@expertfitnesssolutions.com or call (954) 454-5305. He is the one that I purchase Juice Plus through and he can tell you a lot more about its benefits. I believe the program/study for children that is free is when an adult also signs up. You can also find more info at www.JuicePlus.com
I don't think "holistic or naturopath" methods will just work on their own...I truly believe the healing process is one of mind, body and spirit. Gratitude is a huge healer...look for the blessings that are being brought your way from this experience (they are there :-)) and your energy will shift so hat you are making inspired actions. I love the New Earth book that Oprah is working with now...it says every experience we are going trough is the perfect one to help the evlolution of consciousness on the planet! And I am certain that this is the case with people, especially children with Alopecia!
Keep Shining!
Laura
Permalink Reply by Deeann on March 15, 2008 at 1:41am
Maria: I am also taking Juice Plus and Xango. I have always been "healthy" other than type 1 diabetes and alopecia. I rarely get sick anyway, but feel both are helpful. The Xango seems to help with skin issues. My daughter who has very large tonsils and would get sick often, has been taking both for 6 months, and seems to skate through colds now. My son, who had severe athletes foot takes just the Xango and his problems cleared up within a week. My daughter is doing the free program with juice plus because I am a paying adult. I believe you have to be at least 6 years old to be able to participate in the study. It's worth checking into. Good luck.
Permalink Reply by Deeann on March 15, 2008 at 1:47am
Laura: I am also taking Juice Plus and Xango. Although I haven't seen any significant growth, I would be resistant to it as well. I have been taking both for 6 months, and Xango for a year. I really started taking the Xango for skin issues, and the juice plus because my mother sells it. I am a type 1 diabetic, and was hoping that it would help out with that as well. My skin is good, never better in fact, but my diabetes and alopecia seems to be the same. I have enjoyed reading your posts to others, and I watched your youtube video yesterday evening. I am going to purchase your book for my children who are 4 and 8. - Deeann
Permalink Reply by Heather on March 10, 2008 at 10:16pm
I didn't get alopecia until I was 10 or 11 but I've tried Naturopath too although it hasn't worked that well for me. I wouldn't suggest the injections unless her hair grows back and their are only a few spots left without hair. The injections do work but they hurt a lot and if she doesn't have any hair than it's probably not worth it. I was also put an an oral drug which worked but the side affects were really bad so you could try that but make sure that its worth it. There is a study on Alopecia at UBC where they use a kind of cream to cause an allergic reaction which will somehow get the hair to grow back. It is still in testing so they don't know all the side affects though.

just a few suggestions... good luck!

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