Alopecia Areata Support Group

I feel exactly the same as you. My daughter is only 2 and has been diagnosed with this. I wish it could be me instead of her. Its just not fair. I guess all we can do is get all of the information possible and just be there for them when/if things get tough for them. My daughter too has the most beautiful hair...I feel guilty like somehow this is my fault.

Thanks for replying. We are going through the same thing. My daughter's spots are getting bigger, and last night someone asked for the first time "what is wrong with her hair?" I broke down, I just can't take this. My beautiful baby is going to lose her hair. I think you and I need each other.

My mom and family won't accept that this is happening. They all say, oh don't worry about it...It is just hair. Or don't worry...give it to God. They don't understand.

My DD also has not had any treament yet, as she won't goto the drematologist until Dec 12th. I am dreading that day, and Hope she still has nay hair by then.

P.S. ----I am still crying all day, every day about this. :(

I too am still crying about it everyday. My parents don't want to believe that she will have to live with this for the rest of her life, I have to be prepared to deal with this for the rest of her life and cannot keep listening to them trying to be unrealistically positive. There isn't a way you can get in sooner? Even to a PA?

My Daughter did see a PA. In the pediatrian's office. She will see the dermatologist on December 12th. I called the pediatrician's office today and asked if they would please send her for blood work to check somethings like hormones, Iron, anemia, and such -just to be sure they don't find any other problems(My DD had 2 uneplained fevers in the past week that both were weird and resolved quickly). I am waiting fo rthem to call me back.

I am not sure what to do, but I feel like I should be doing something. I know many don't try treametns, but I will try anything safe for her.

First. Stop crying (I know it is hard)....You can not worry about the future. Live in the moment and make the best a most informed decisions you can.

1. Don't make it about you. It is not your fault and you have no control over it.
2. Don't worry about children teasing her years from now. We don't know what will happen 1 min from now let alone 5 years from now
3. Make sure you have the RIGHT doctors
4. Pick a treatment path that is right for your child. Don't look for a magic pill
5. D-Stress your life and the household environment. Do you yell alot? (If so, STOP!). I've learned that spilled milk is just spilled milk, nothing more.

Deal with things as they come. If it ever gets to the point where she needs a wig, let her make the decision. Don't do anything that would make her feel ashamed of the AA. When my son had it, I was prepared to shave my head and just keep living...It's not easy, but self inflicted emotional stress can make things worse...Keep up the fight...

Yeah, it's pretty depressing. But, my mom has been extremely supportive of me as I have been fighting this disease for most of my life.

" I can't accept that this could keep progressing, that her hair could all fall out."

That's how I feel pretty much every day of my life and continue to hope that well, it'll just stop and I'll be better. I used to pray every night that one day I would "wake up and [my] spots would be gone," but it hasn't happened and I've come to accept it probably won't. I still hope occasionally, but reality hits hard.

For me, I get cortisone injections in the spots every month and thankfully, my hair grows back eventually. Perhaps you can look into that for your daugher. It is traumatic, but once you recognize that you really can't control it, you just need to suck it up and move on with life. It's all about how you respond. I know I am a stronger person because of it. It definitely forces you out of superficiality.

If the disease continues, it will be amazing for her to have someone who cares in her life when she is older. Your compassion for her will play a huge role!

Truthfully, I am so grateful for my mom. It's the sort of thing where I almost forget I have the disease from time to time because I want to try to have a normal life as much as possible. But, well, more always falls out. And, I am so thankful to know that I can call my mom who will tell me how sorry she is and that she understands the pain and trauma. I can't tell you how many people have said to me, "Your hair looks fine. There are worse things in life." This is a very personal disease and most likely, you will be one of the only people in her life who understands.

Honestly, this disease is a, well, bitch. And, I hope you don't have to watch your daughter suffer for much longer.

Have you thought about home-school your children. It can be a very rewarding wonderful experience. I did it for about 12 years and my sons are good guys. All grown up now and on their own. One is a Computer Tech and the other works for Starbucks and loves it. So there is really a light at the end of the tunnel. I know it must be hard not to cry god knows I do enough of that myself, but the important thing here is that your daugher has this and it can't be changed. If you look at this way it is only hair and she is healthy I hope. One idea is that she could be tested for Celiac Disease. I have CD and that's the reason I have this lovely disease. So you could get her tested for that. There is a home test is ideal and as good as the tests at the labs. If you are interested I can get you that information.

Really think about home schooling though it wonderful for both of you. The social aspect is easy Girl Scouts, Camp Fire, Church, 4-H just to name a few.

Take care and stop crying for your daughters sake if not yours. It is NOT YOUR FAULT!

withhope,

Thank you....I wish I could homeschool her, but it wouldn't work for us. My sister does this and it works well for them. I work full-time from home and would not be able to give her the attention that she needs to home-school. I think it would make me tense all the time (trying to manange 6 daycare children, my young son, and her schooling). I also can't leave my house between the hours of 7:30 am and 5:30 pm. My daycare kids take up a lot of time and energy and it would not be fair to her -she'd be missing out on too much.

Can you tell me what Celiac Disease is and the symptoms? I am going to have her hormone levels checked, and checked for lupus and blood sugar levels. She is a very moody, very highly stressed out child. I worry about her.

I have a three year old girl who has it. She has had it since she was 18 months. We have been to several dermatolgists and they all say the same thing. You can try Minoxdil (the higher strengh) and topical steriods. That is what the pediatric Dermotologist suggested. The shots I hear are difficult and maybe too hard for the little ones who don't undersand it. I find I am more upset by it than her. I am trying hard to simply be positive and let her know that she is beatiful the way she is. I think the more matter of fact you are about it the better they handle it. The better they handle it the more the kids around her will be able to ignore it. Of course my girl is in preschool and the kids don't seem to notice. If it becomes an issue I will try to go in and talk to her class about what she has and why. Hopefully this will preempt some problems. Let's face it we all have something we could be teased about. Make her strong and she won't care what strangers think of her. Hope this helps. I do know how you feel. I just pray that I can handle well enough that she will grow to be strong and beautiful inside and out.