I just put it together...need support

Has anyone else been here?

It's 1am and no signs of sleep.

My little girl is 5. a few weeks ago, we noticed a bald spot, and thought her baby brother had actually really yanked on her hair this time. As time passed the spot didn't seem to grow in at all.
Then, a few days ago, we noticed another bigger patch, and thought it odd.
This evening, I noticed a few visible patches and decided to look when my daughter was sleeping.
I was astounded.
She has at least a dozen patches larger than a quarter over her scalp. The hair around is very easy to pull out.
I also found out my aunt had alopecia.

Upon quick Internet search it is very apparent that she has alopecia areata. It seems to be moving along very quickly.

I am so sad and scared for her. Part of me tries to remember that she will always be a special person and all that...just as her mom I am grieving that she is going to have to live through this. Sure she may become a stronger person and flourish and blah blah blah, but can someone please tell me they understand? I am grieving for her. I almost feel like I need permission to be sad for right now before I can pick up and be strong and move forward with her. I know she is not her hair. I know she will always be beautiful. I know all that. But I just realized this a few hours ago and I'm sad. I am dreading talking about this with her. How am I going to get hold of myself? She is going to notice very soon and I have to get it together so I can be honest and positive with her.


Aside from all that, I'm feeling so overwhelmed with the medical implications...the associations or correlations with other illnesses as well as the overwhelming issue of what kind of treatment, if any.

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Permalink Reply by Danielle & Lilly on April 12, 2009 at 12:29am
I am having a sleepless night. I can empathize. My daughter just got her biomatrix from the hair club for kids. It was something that I brought up to her and she liked the idea. She loves it. She is always looking at herself in the mirror or brushing her hair. She is nervous about school on Monday and what the other children will think. I am nervous and scared for her.
My daughter has a therapist and I see him as well. I suggest you look into therapy.
We stopped treatments because it was only temporary and it was such an emotional roller coaster ride.
I also suggest you find a child near your area with alopecia and arrange a meeting with the children and each other's families. We did that and it was wonderful.
My next step is choosing an accupuncture therapists. So far they have told me that herbal treatments are the way to go. We shall see if this is something worth trying. Good luck and remember, there are many mothers (and fathers) having sleepless nights. We are awake with you.....
Permalink Reply by Alyssa (barbara-mom) on June 1, 2009 at 9:06pm
I know exactly how you are feeling. I can't seem to drive in my car without crying anymore! My 8 year old daughter was just diagnosed with AA. She has one patch in the back of her scalp and everyday, I fear finding more. I can't imagine the emotional effect this is going to have on her! I am praying I won't see anymore loss, however, her hair does look like it is thinning on the top of her head. She always has had very thin hair from the time she was a baby. She is plagued with multiple allergies and I wonder if all the meds she is on have caused this. So yes, I am feeling the same way you are. I don't know where to begin to help her!
Permalink Reply by Nikita on June 2, 2009 at 6:25am
I am so sorry you and your daughter are going through this
but I put it into perspective when I went wig shopping and the women asked how long I have been in treatment ( cancer ) and everyone around me had cancer, after that I felt sort of lucky.

Also because you are older you no the implications whereas she won't understand yet.

Don't be too worried about other Auto- immune diseases because the internet really amps it up, I looked up AA on the internet and the next thing I read was I have an 80% chance of getting Lupus, This is not true though, obviously you have an increased risk, but it is not a given.

I understand what it would be like to tell her but if you get upset then she will see it really negatively. Maybe if you get your husband, parents or siblings to tell her. Also because she is young let her no that at times it can be tough but that she will get really cool scarfs, hats, bandanas, and wigs she can have Jessica Alba's hair one day and Sandra Bullocks the next.
Also I was diagnosed when I was 18 and it is only now that I realise my parents felt it twice as much as me, it is hard to believe but I guarantee you are more upset about it than she ever will be. When I found out (1 yr later). I had my up and down days but eventually I accepted it but my parents, particularly my dad took more time coping with it

xox good luck
Nikita
Permalink Reply by vikki saravia on July 14, 2009 at 6:24pm
Hi There,

I have just joined this group this evening, for the same reasons everything in your message states. I am so devastated for my 9 month old baby girl. She seems so fragile all of a sudden, when a week ago I had this beautiful robust little girl. Now my head is whirring with the implications/causes/treatments etc and I just can't stop crying. The only conselation I have right now is that she is so young she may never know any different and I have plenty of time to train her to be thick skinned (I know she will need it) and her big brother to be the most protective big brother ever.
Permalink Reply by Eva on July 15, 2009 at 8:27pm
I was diagnosed with alopecia areata when I was only 2 years old. It has sometimes been rough, and it is fine for you to grieve. She will too as she gets older, and it's fine.

My parents were always wonderful about it. The best thing they ever did for me was to let my own decisions about it. They made everything available to me- dermetologists, wigs, etc., but never implied or demanded that I seek treatment to cover it up. They let me choose when and what I wanted to do. When I was ready to wear a wig, they took me to a friendly wig shop and helped me find something that I liked, and when I told them I wanted to try medicines, they went with me to the dermatologist and supported me. That freedom to deal with it as I felt comfortable was the best gift.

If you know anyone with AA, or could find someone in the area with an AA child who you could gently introduce her to, that might also be nice. I do sometimes wish I had known someone with alopecia as a little girl just so I would not have felt alone with it.

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