Parents of Children with Hairloss

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Parents of Children with Hairloss

Here you can talk amongst other parents about treatments, highs, and lows.

Members: 586
Latest Activity: 45 minutes ago

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Discussion Forum

Help with FDA response from those in US with alopecia - by December 5

Started by Marianne Peterson. Last reply by wclawvs 45 minutes ago. 1 Reply

Need help from anyone who lives in the United States and has Alopecia.I am the legislative liaison for the National Alopecia Areata Foundation in Massachusetts.  We have an action alert out that we…Continue

How to deal

Started by bluesky on Friday. 0 Replies

How did your kids deal with this at first and how are they dealing with it now? And about yourself, how did you deal with it? My son is almost 4 and he doesn't yet understand but doesn't want his…Continue

Looking for the kids with alopecia at Jenkins Middle School in Colorado Springs

Started by Sara and William. Last reply by Pearl Sep 12, 2014. 1 Reply

My son and I are moving to Colorado springs this school year to join his dad, who has been there for a year and a half now.  My son has alopecia, and naturally I was concerned.  Both times he's gone…Continue

My 5yr old daughter was diagnosed with alopecia and Dr. pretty much gave me no hope

Started by JEANETTE. Last reply by Daphne Aug 21, 2014. 13 Replies

Once he gave me diagnoses i started to ask for treatments however he pretty much advised me on wigs.To be honest i didnt know what questions to ask can their be alternatives etc? her father has…Continue

Tags: and, all, advice, Any, her.

Kids head covers?

Started by Lori-akaMimi. Last reply by MummyWendy Aug 5, 2014. 8 Replies

Hi All! My six year old granddaughter is rapidly heading to AT  :-(  I have been searching for child size scarves, turbans and/or knit caps - with little luck. Right now, I'm specifically looking for…Continue

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Comment by Angie on Thursday

Hello bluesky! My son's started at 18 months with patches, but everything was gone, including eyebrows and eyelashes, by the time he was 3. He is now 7. He occasionally gets light fuzz, but they never go anywhere. We are still always hopeful because it is unknown what the body can do. We have learned that his was probably triggered by leaky gut and infections, including Lyme. Anyway, he is still very confident and I attribute it to the fact that speak openly and honestly about everything and we don't behave as though it is a problem. We laugh a lot and enjoy life as it is and never give him reason to feel something is wrong with him. All I can say is focus on the positive so that your son doesn't pick up any negative energy as though he should be sad or embarrassed about hair loss.

Angie

Comment by bluesky on Thursday
Hello I have a 3 year old who has this. He recently started showing bald spots. How fast did your children's hair fall out? I love my son's hair.. full dark brown and thick. For now I can cover it but in the summer time I need to cut it short. I'm worried he might get shy.
Comment by PamFitros@boldlybaldwomen.com on Wednesday

I caught a segment of the Today Show this morning. They did an experiment to see the impacts of curly and straight hair when women changed their look from one to the other. The show invited women to tweet their comments and picture...so I did.

I think this is a great opportunity to get attention for those of us and our children who don't have hair. Please check out the link and share it in as many places as you can think of. And, if you are willing, tweet a picture of your child with alopecia to the today show. You'll find the hash tag when you click on the link.

http://boldlybaldwomen.com/57-of-teen-girls-and-44-of-adult-women-a...

Comment by Lynn AKA Mom of 2 w/AA on July 29, 2014 at 9:56am

Hi all!  Someone recently sent me a private message - it went to my personal email - but I am not sure how to respond.

My daughter will be a senior in high school & my son a junior in high school next year.  Neither one of them has had AA for about four years now :o)  Also - I have a friend I met at this site and her son has not had AA for that amount of time :o)  Hang in there and have hope!

Things I did differently:  Cooking more vegtables and making sure there is no mold in the house.  Love to you all & best wishes always!

Comment by jayden thompson on June 23, 2014 at 10:39pm

I just wanted to share with Alopecia World that, a doctor is treating people with Alopecia with a arthritis drug and it is growing hair back however it is not a cure but when I get more information and a link to his website I will post it.

Comment by jamom74 on June 23, 2014 at 10:37am

My daughter will be 12 and was just diagnosed with AA but there is also some hair twisting in the front that she has made worse it is very emotional time we don't understand what is happening and feel so out of control - :-(..  We are in NJ does anyone know about a support group in NJ we are more North Central.  My heart breaks for these kids that need to go through this.  Growing up and teenage years is hard enough and they have to deal with this.  I am so glad I found this group.  God Bless!

Comment by MomLynnne on June 23, 2014 at 9:52am
So proud of your beautiful girl. Mine is 10 and just diagnosed but in denial.
Comment by Janice on January 30, 2014 at 5:51pm

So today was the day that my daughter decided to share with her class that she has alopecia. I was there early to pick her up to go get some blood work done. I got to see her tell her class. She did a great job explaining it. Now she says that she will not feel like she has to hide it at school. Today was a great day! There have been a lot of not so great days-  but today was a good one! Just had to share! Very proud!

Comment by Janice on January 27, 2014 at 12:01pm

My daughter is using head bands right now to cover her spots. I am wondering what hats etc are best for using after the headbands are not longer doing the job?Yes she knows she has Alopecia. We talk about it with her. She is getting ready to tell her classmates, but is not there yet. So just wondering what works best.

Comment by Mystery mom on January 23, 2014 at 11:49pm
Hello parents just wanted to share my story and see if anyone has a similar one. My daughter as as an infant lost her hair and eyebrows around 5 months of age and her regrowth took long to come in. The regrowth was dark and wiry and coarse but her eyebrows are spare. Her hair is pretty thin but you couldn't tell because it is so "puffy" because of the texture and sticks up all over the place. We get lots of stares and sometimes comments. We met with the amazing ped. dermatology group at Columbia Presbyterian and also met with Dr.Christano. We are awaiting a diagnosis..but it is leaning towards Marie unna Hypotrichosis and most cases report complete loss of hair in the first decade of life. Has anyone ever heard of Marie unna?? I hate not knowing what will happen to her.
 

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