Replies to This Discussion

Permalink Reply by margaret and nicole on August 31, 2009 at 2:57pm

I have no ideas how to stop the hair loss, but I can offer some ideas on thickening the hair that he still has. My daughter has several patches, they started in March after an illness/hospitalization. But we've been doing the following things to thicken her existing hair and it has worked well. The patches are just now growing to the point where you can see them anytime, not just when you move or wet her hair. Here is what has helped us:

--Give him flax seed oil, either straight or mix it with food. We blend 2.5mls into her milk each day and she doesn't notice it. She will take it straight too.
--Rub jojoba oil on his hair once a week. It might take a couple of washes for it to come out so it is best done on a day where it is ok if he looks oily.
--Rub avocado on his hair. This works great! Also takes a couple of washes to not look oily.

Hope this helps! Keep your head up, I think it is very important not to fret or worry about the hair loss in front of the child. Fret to us, we'll be here!

Permalink Reply by Jennifer on August 31, 2009 at 5:35pm

I try really hard not to worry in front of him. Its so hard not to panic every time I think I see a new thinning or it parts wrong and looks like a new patch. I don't want him to lose all his hair. As of right now he has 2 and a 3rd starting. I just wish I knew, know what I mean? How do you know if this is it? Or if more are coming? Is he going to lose it all?...The questions just keep coming. And I hate that the doctors know nothing about it. *sigh*

Permalink Reply by Cindy on August 31, 2009 at 5:58pm

Hi Jennifer, Sorry to read that you and your son are going through this. On a more positive not, kids tend to be more resilient then we give them credit for. Kids are just interested in playing and not appearance. When Sam was 5 she was starting kindergarten and I had the same worries you had and still do. Sam started school with hair and then lost it all by the second half of school and wore a wig. The kids would notice her brows and lashes disappearing and often commented that it did not matter, that they were still her friend. I do suggest in your case if your worried about peer reactions to send a letter home to the parents. This will help the parents be able to explain your son's condition to them. You can also get materials to do a talk to the class. I also make sure that all my daughters teachers know what is going on. I also suggest continuing to build your sons self-esteem. Maybe there is a sport that he really enjoys that he can participate in or some other activity he enjoys. Give him the tools an the power to feel good about himself. You should also contact the childrens alopecia project. They maybe able to help you locate another family in your area. Best of luck .Cindy

Permalink Reply by Larry on October 14, 2009 at 4:44pm

My son was about five when we discovered patches of hair missing. First, one or two spots didn't think much of it. Then they would come and go and moved around and we got the diagnoses. Our son too, is a handsome, happy boy and were able to hide most of his spots by growing his hair longer. But, when he turned 11 he lost all his hair within two weeks; we couldn't hide it. He lost it during the school year, but because it happen so fast I believe that may have helped him coping. His friends new something was wrong and the teasing I think may have been eased some. But his friends and the school have been supportive and my son remains very active in sports and many activities. I believe the more that the people he is around know about alopecia the better. He doesn't wear a hat at school and don't hide the fact he is completely bald, he wears glasses which I think helps because he has no eyebrows or lashes. Another student at his school also lost his hair around the same time which was strange. We worried that environmental conditions may have been a factor, or stress of middle school? Though we don't have an answer. I hope our story helps, and I wish the best four your son. But if his appearance should continue to change I believe children are resilient and stay positive, educate your self with as much info as possible. Try to keep you sons self esteem positive by keeping him involved in many activites. Childrens Alopecia Project (CAP) has a great program.

Permalink Reply by Suzanne O'Leary on November 4, 2009 at 4:04pm

Hi Jennifer - so sorry to hear what your son is going through. I went through the same with my daughter when she was 5. It's horrible isn't it? you just feel so upset and helpless at first. I just wanted to say: it definitely gets better and you get used to it all, and it doesn't seem so scary after a while. My daughter (now 7) now has no hair at all, but she is just a normal girl with friends and is quite happy. She is coping really well and I'm sure you're son will too!

I also wanted to really agree with Annie - what she says about treatment & wigs & how to tell people at school is exactly my experience too. My daughter did get teased at first, but so far this school year she hasn't reported any bullying/teasing to me.

I hope you find a way to deal with it all - and I'm sure you will find inspiration and support from all the amazing people with alopecia who are on this website & others!

take care x

Permalink Reply by Jean on November 8, 2009 at 12:17pm

Jennifer,
Sorry I didn't see your post earlier, better late than never!!! I understand how emotionally difficult this is for a parent. My son now 16 started with AA just at his 15th birthday. Within two months for him he lost all of his hair and then within a few more months the facial and body hair.
There is no way you can prepare yourself for what will be with regard to his disease. There are so many treatments you can try, however, there is no specific "cure" for this disease, as I'm sure you have discovered by now.
I think the more you worry the more difficult you make the situation for yourself and possibly for him especially if he is sensitive to you.
It sounds like your family has had so much going on through a pregnancy and move, stress I firmly believe is such a trigger for people with Alopecia. And we can not shelter our children from changes in our lives and and what life "hands" them, we can only help them be guided I believe to deal with what life gives them. Do not blame yourself for what you think you did wrong we are only human, and if there were any kind of manuel that came with how to raise any kind of a child especially those with "differences" well someone would be rich!
I live in So. Cal. as well if you would like to contact me let me know. I have had my son to several dermatologists and went to see a specialist in San Francisco. I'd be happy to share what I have learned.
You need to take care of yourself as well, you can't help anyone if you do not take care of yourself.