Replies to This Discussion

Permalink Reply by Connie - Chris' Mom on March 6, 2012 at 1:12pm

My son was 14 when his hair fell out, so I know your pain. He lost all of his hair within 6-8 weeks and started high school without hair. He stayed completely hairless for about a year. He's now 17 and has most of it back (he even needs to shave a couple of times a week!). All I can tell you is to be there for him. Be his advocate. My son found comfort (if there can be any) in the fact that I went to the school and made sure he could wear a hat. I let people (family and family friends) know what was going on so he didn't have to talk about it. We didn't try any treatments because of some of his other medical concerns we were dealing with. My son is also dealing with some serious medical issues, but alopecia has by far been the hardest thing he's had to deal with. Try to make sure he doesn't cut off his friends and go into seclusion. My son became very depressed and escaped into his video games, shutting everyone and everything out. His school work suffered because he just didn't care. Just recently he's began to open up a little bit as to what he was/is feeling, but that's only after he's gone through it and has hair again. He continues to wear his fedora whenever he leaves the house and his biggest fear is that he could lose his hair again. It's a tough road to travel, just be his rock, his safe place, that's really all you can do.

Permalink Reply by Wonder on March 6, 2012 at 1:23pm

Thank you so much Chris' Mom for replying.

I have offered to talk to his school, teachers, principal ect.. But he doesn't want me to say anything. He says if they want to know they will ask him. He's very embarrassed about it, but he won't even let me ask the principal if he can wear a hat. I know he's stressing about this, and he doesn't want to talk about it at all. I don't know what to do to help him deal with this. :(

Permalink Reply by Me&myGirl_Aussie on July 23, 2012 at 6:58pm

I lost all my hair when I was 12 ((AU) and my daughter now this year who is 8 (AT), please believe me, when I say knowledge is the key to happiness at school. In australia here I used the Alopecia school pac to get info and letter templates to help my daughter (which I got from the Australian Alopecia foundation web site), I did up a letter for the teachers and a different one for the kids, had a meeting with the principle and her teacher and went from there, she now openly talks about it in her news time in front of class, wears wigs to school (what ever one she feels like on the day) and the kids in her class are so accepting of it, even on diversity day she got up in front of the whole 3 and 4 years and told them that "she is different because"........ Also with the school support, if there is any trouble with children that are unaware with her problem, the teacher quickly tell the bullying child what is wrong with Brooke, and the outcome is completely positive.
My mother did the opposite, and it was hush hush, and my experience was terrible, the children unknown as to what was wrong with me teased me, and my wigs, pulled on my wigs, etc........ I wish I had the information my daughter has now.... Please really talk to your son about this, and I think the national alopecia foundation web site has school packs to with the templates etc.......

Permalink Reply by Julie Kurth on March 6, 2012 at 2:50pm

My daughter was in 6th grade when all her hair fell out. We tried everything (including steroid creams). Nothing worked. Since she was a girl, we got her a wig. She did not want anyone to talk to her about it either. My best suggestion, if you have the means, is to get him to talk to a therapist. We did that with our daughter and it helped immensely. Of course, it has to be the right therapist so don't settle for one that you don't think is helping. We went through a couple of therapists, too. If you have a bad feeing, go with your gut instincts. When we did find the correct therapist, it was amazing how much she helped my daughter. My daughter did not want to talk to me or her dad about it. She is still that way. She doesn't want to talk to us about her personal feelings. It hurts us, but we've come to try to accept it. We eventually went to a dr. at childrens' hospital in Denver. He put her on oral steroids. They worked and her hair is now all grown back in. She is now in 8th grade. It is still short, but at least it is there and she no longer has to wear a wig. I talked to her teachers to get her out of gym class when she had no hair. We didn't want her wig to fall off while doing sports. After a while, she started telling people what was wrong with her. Make sure he knows to tell people that it is not contagious. Kids can be cruel and not want to be near them so they don't "catch it." I remember feeling exactly like you. People started telling me I had to get over it and be strong for her and not always be falling apart or sad. That is hard to do, but I try my best. We do not know if it will all fall out again, but I think we all believe it will. It's just a matter of time. Again, my best advice is a therapist. She was the only one that could get through to my daughter and make her feel somewhat confident about herself again. If you can't afford a therapist, just be there for him if he wants to talk about it. Try not to talk about it too much yourself or you are always reminding him. Tell him he is handsome inside and that is what matters. He probably won't understand, but you still need to say it. Make sure he knows you are there for him to do anything for him that he wants you to do and then step back. He will let you know when he needs something. I'm sorry you are going through this. I remember the horror when it first happened to us. God bless him and your family.

Permalink Reply by Wonder on March 6, 2012 at 3:06pm

Thanks for the great advice Julie. Unfortunately we can't afford a therapist, but I will do what you suggest. He knows we are always hear for him, if he wants anything. I tell him all the time, he is gorgeous. :)

I have been reading that this could be connected to a thyroid problem? Did you have your daughter checked for that?

The doctor I went to, was just terrible. He told me the name of Alopecia areata, and told me to google it to find info on it. Grrr. Then I read that a thyroid problem could cause this also. I am so mad that all he did was look at his head, and give us a prescription for the steroid cream without even checking anything else. No blood test no nothing. Just take this and come back in a month if it's not better.

Permalink Reply by Julie Kurth on March 6, 2012 at 3:28pm

You need to see a different dr. for one. Someone with a little bedside manner and someone who actually cares. Yes, my daughter was checked for thyroid. Nothing wrong with it. There are other groups online to join. A wonderful group is CAP (Childrens' Alopecia Project) and GAM (Global Alopecia Mission). Check them out. Lana Becker is the founder of one of them and is a wonderful source of information. She has a little boy with alopecia and is very proactive in fundraising, etc. for kiddos with alopecia. She is wonderful. Also, there are support groups in all areas of the country. They even have summer camps for kids with alopecia. What area of the country are you from? The CAP group is in the Pennsylvania area and has a lot of activities and things to get involved in. We are in the Dallas area so are not able to take advantage of those things. There are many things that can cause alopecia. It is an autoimmune disease with no cure unfortunately, but getting involved in these websites is a good way to create awareness so our kids don't have to feel so insecure. Many kids think that alopecia kids have cancer and are losing their hair due to chemotherapy. My daughter just wrote a thesis on alopecia at her school to raise awareness so kids don't always stare at other kids with no hair. Like I said, there is much info out there, but check those two websites. You will enjoy them. I'm always here too if you have any questions.

Permalink Reply by Wonder on March 6, 2012 at 3:36pm

Thanks for recommending those websites, I will check them right away. I live in Ontario Canada, I will look if they have something here. My son told me that some of the kids already asked him if he had cancer. He just said no. He really is not feeling comfortable talking about it right now, it is probably a shock, since it came on so quickly.

I am taking him to another doctor next week, and have him check for everything.

Thank you again. :)

Permalink Reply by Connie - Chris' Mom on March 6, 2012 at 3:35pm

We went to our pediatrician when Chris' hair first started falling out. They gave us the referral to the dermatologist but also did some standard blood tests. The blood tests showed Chris was severely anemic and then more tests were ordered. The dermatologist told us to get to the bottom of his other problems first, they were more important and then he could help us deal with the hair loss. The source of his anemia is seemingly unrelated to the alopecia, but it was reassuring that all of his doctors stayed in contact with each other in ordering tests and sharing results. In Chris' case he presented with 2 autoimmune diseases at once (Crohn's and Alopecia) and we don't know if the treatment for the Crohn's is what is causing his hair to grow or not. In our case we had to deal with the more serious of the two and although his dermatologist offered treatments, Chris didn't want anything to do with injections in his scalp. He did even want to try Rogaine since his dermatologist said it would burn.

If I were you I would request that at least standard tests are run to rule out some other cause. Our dermatologist asked for a thyroid panel and even a chest and abdominal xray, in addition to what his other doctors were doing. I'm not sure what the xrays were for, maybe he had a hunch on the cause of the anemia, it was just great to see all of his doctors work together with his entire health picture in mind.

Permalink Reply by Wonder on March 6, 2012 at 3:46pm

I will be bringing him to see another doctor. I am angry that the doctor did nothing, he didn't even tell me what alopecia areata was. What a surprise to find out over the internet. Hopefully we find one who is better.

Permalink Reply by Julie Kurth on March 6, 2012 at 3:51pm

Rogaine may work for him. My daughter tried it, but didn't like it because hair started growing on her face. It never burned though.

Permalink Reply by Wonder on March 6, 2012 at 3:56pm

Thank you, we will look into that. :)

Permalink Reply by Nikki - Coley's Mama on March 9, 2012 at 10:10pm

Hey, I am sorry your son and family have to go through this. I don't have any advice as my son is only a baby. But you should definitely try and see a specialist, not just a pediatrician. It sounds like he is in shock (I would be, too.) Once that wears off, I bet he will come around to talking a bit about it to you and letting you do things like getting the principals permission to wear a hat and stuff. I can't imagine how he feels. He is probably devestated, heartbroken, scared, and sad all rolled into one. Poor guy. My thoughts are with you both.

• ‹ Previous
• 1
• 2
• Next ›
• Page