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Permalink Reply by Samantha Rockwell on June 1, 2012 at 9:11pm

Lynn, Thanks so much for all your help/advice. This is still so new to us and it is taking a while for me not to get emotional over it. Every time I see a bald spot, I want to cry. I keep it all in around my son because this is hard enough as it is for him. It is getting better as the days go by. We went to the dermatologist yesterday. She seems to think that he will not lose all his hair - but I do have to wonder "how does she know that?" Any way, she gave us Clobetasol cream because my son did NOT want to endure the shots. He has up to 8 bald spots now and she said she would have to do multiple shots per spot. I supported his decision, but I have to admit I wonder if the shots would be more effective. In any case, we started the cream last night. We put it on twice and day and go back to the doctor on June 26. I have my fingers crossed that this will work. My husband put the cream on last night because I get so emotional over it. I HAD to do it this morning before school because my husband was asleep!! I did it and didn't cry :) I think I am pulling my emotions together with every passing day! I do still cry, but I feel I have it under control better now than I did last week.

It is so good to talk with another mom that really understands and knows what I am going through. If you don't mind, I am going to add you as a friend. Can I contact you with questions or just plain frustration?

Samantha

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Permalink Reply by Lynn W. on June 2, 2012 at 8:42am

Hey Samantha -- I saw your friend request and approved it this morning. :-) Feel free to contact me whenever you want! I may not respond immediately, especially with my summer semester of school starting on Monday (yes, I'm one of those "non-traditional" students who has returned to college), but I will respond. It is nice to talk to somebody else who understands.

Right before Dylan lost all his hair, I was the one who had to be the rock of the family. My husband was constantly freaking out and I had to be the one to say, "It is what it is" despite what I was feeling inside. I know Ronald said he didn't like the idea of a mother crying in private (thanks for your other comments, Ronald!), but the truth is I knew I had to show strength in front of my son. I had to show him his hair loss wouldn't be the end of the world, even though it may have felt like it. So I did my grieving, and make no mistake, it really was grieving, in private. It's hard to watch your child go through this. I think the hardest part was (and still is) the helplessness. The cause of the disease is unknown, the cause of the attacks is unknown, and there are no guarantees on the treatments. That really stinks! Because of all the unknowns, that gives a parent no path to focus on. No place to assign blame. No behaviors to avoid in the future. It does get easier, though. I still cry sometimes, but not nearly as often as I used to.

Good luck with the cream! The shots are very effective for some people. My sister had a friend in high school who had one AA attack, got the shots, saw full regrowth, and never had a problem again. Like I mentioned before, we did see some results. But the shots are painful, and there are a lot required. Dylan said that sometimes he could even feel them hit his skull.

This may not matter since your son is already wearing a hat, but one thing that helped my son's self-esteem a little back when he still had spots was that old spray on hair you used to see on late-night infomercials. We would spray it on his bald spots then artfully arrange his hair over them. That way, when my son ran around and did things, even if his hair moved it was more difficult to tell there was a bald spot there because there was no day-glo scalp showing through.

Now if we could just find a way to fix his eyebrows...

Good luck to you and your son, Samantha. Please keep me updated on his progress. :-)

Lynn

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Permalink Reply by Samantha Rockwell on June 3, 2012 at 2:37pm

Thanks so much for accepting my friend request! It is hard to talk to my friends about it because they just don't understand - just like I would not have understood just 3 weeks ago! You really have to live it to fully understand.

We are hoping the cream works, but as I have read it may not. The good news is that no new spots have come up in the past 2 days!!! My husband and my son seem to think that they see tiny new hairs coming in - I pray they are right! I know the cream will take some time to work and it will take time for the hair to fill in IF it is growing back at all.

You are right in the fact that I do feel helpless. When you are told "We don't know what causes it, treatment may or may not work, we don't know what triggers it, etc" you are left with a completely helpless feeling. As a mom, I just want to fix it for him and I can't. I have even been told, oh he is a boy just shave his head, it's only hair!!! I don't think people understand how emotional alopecia is. Even though he is a boy, he is struggling with his emotions. It is more than "just hair".

I wish I had the magically solution for you about Dylan's eyebrows! Tell him I said I think he is very handsome in your profile picture:) Like I have told my son, he is still the same person with or without hair. Nothing can take away who he is on the inside!

Thanks for your replies and accepting me as a friend. I will be talking with you again very soon I am sure! Have a great day!

Samantha

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Permalink Reply by Me&myGirl_Aussie on July 25, 2012 at 10:45pm

Hi, don't mean to butt in but have a look at the parent support pack, here is the link,

http://www.naaf.org/site/PageServer?pagename=support_resources_parent

When my daughter lost all her hair earlier this year, I was on a mission to make sure she did not go through what I went through at school when it happened to me(as in my day it was all hush hush and I was teased etc..., I saw her teacher and the principle, wrote letters to all the teachers (using templates customised to Brookes situation) and letter to all the childrens parents of year 3 and 4. The school was very helpfull in distributing these out for me.

Brooke is now so confident - her friends are always looking forward to "what wig is she wearing today" and to the point where she even talks about it in show and tell time, takes in different wigs for the kids to see, talks about her pen pal friend in America who is same as her - and when she has sleep overs, no wig, she goes bare, I am so proud of her.

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Permalink Reply by LitchKing on July 23, 2012 at 6:13am

So sad to hear that. I hope your son will be getting better soon.

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Permalink Reply by Samantha Rockwell on July 28, 2012 at 8:23pm

Thank you LitchKing! It has been very hard on all of us. I hope his hair comes back soon, but I know not to get my hopes up either :(

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