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 Brandie Bowman on March 11, 2008 at 10:04am
This is why Im here. I need to hear these stories. I have AA and my son lost all his hair at 14 months. My own AA is hard enough I havent even begun to deal with his. He is going to be 2 in April He is My beautiful bald little boy. I fear of what he will haft to go through in school and social situations. My husband says it will only make him stronger. I need advice and support. I never dreamed my children would haft to suffer from this.
Permalink Reply by Janna on March 19, 2008 at 12:25am
Thank you all for your responses. Every glance into someone else's experiences, hurdles and triumphs helps me remain grounded and realistic and better yet hopeful that Lynnea will turn out as strong and beautiful and supportive as all of you have.

It's so nice and such a relief to have other people to relate to!
Permalink Reply by Shawna Reed on May 8, 2008 at 11:18am
I can relate to this. A week ago my 2 1/2 year old daughter was diagnosed with AA. I found a large clump of hair on the ground, and when I checked her head she had a bald spot the size of the top of a pop can. Since then we have noticed many quarter sized areas as well. For now the majority of the spots are under her hair which is thick and wavy. But I know that soon it will more than likely be noticable. I am really trying to deal with the shock, and the fact that there is not much education on the AA here in Canada. I really want to make sure that she lives a happy healthy balanced life. I am trying my hardest to not let her see me upset, but I feel so helpless. I am here if you would like to talk.
Permalink Reply by tony on May 17, 2008 at 11:04am
Hi there, just read your story unbelievable how identical to my daughters situation , she also very sensitive to food dyes and additives ,shes presently going through her second time of losing hair but this time shes lost most of her eyebrows. My wife and I are learning to cope with this but find courage through my little girl, shes unfased but we know teenage yrs will be tough. We do go to a homepath and are going to ask about Sterol, thank you for sharing hope to chat more if you don't mind. God Bless.
Permalink Reply by Annette on June 12, 2008 at 3:57pm
hej! My babygirl is now 3 months old and loosing hair. My biggest son (8 years old) had AA last year so I am very concerned about my youngest daughter. I am afraid that she has got AA.
Permalink Reply by Monique (Mom) on May 16, 2009 at 9:40pm
Wow! You sound like my baby. She also started loosing her hair at 91/2 months. She is now 13months and has lost everything including her eyebrows and all her eyelashes. I am devistated. I have been looking for someone like you with another young child diagnosed. I wrote down the STerol you tried.
Thanks,
Monique
Permalink Reply by Janna on July 16, 2009 at 4:28am
Hi Monique,

I just wanted to let you know that the naturopathic route that we are taking with Lynnea is definitely showing us results. Apart from the sterol supplement that we give her, we also make sure that we monitor her diet and give her a multi-vitamin each day. It's been a slow process (but non-invasive, and no chemicals, which I don't feel right about giving her at such a tender age) but we're now seeing established pigmented regrowth - patches about 2-3 inches wide and 1 inch tall, and getting longer each day, above her ears, and more just starting in the back and on the top of her head. Her eyelashes are full and thick, and her eyebrows are completely filled in again. She turns four on Saturday, so it's been a long process.

I'm excited to see these changes, because it means that her system is finally balancing itself out. I've also FINALLY come to that place where I don't blame myself for her hairloss, and I don't spend each waking minute imagining the 'what if's'. My husband and I have made an effort to educate her about alopecia, and she's just fine and dandy with her herself bald. So if this is all temporary, it's ok.

I hope the sterol works for your daughter, too!

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