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: 619
Latest Activity: Jun 26

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Discussion Forum

How to deal

Started by bluesky. Last reply by Molly Mar 13. 4 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

Mom ISO of advise and input..

Started by FernandezFamily. Last reply by Wendy Green Aug 17, 2015. 1 Reply

Last year we discovered small patches on our 12 year old.  Within that week of noticing the hair patches, the following week he broke out in hives and had an allergic reaction to nuts.  Before the…Continue

New to this

Started by aweiss. Last reply by aweiss Jul 23, 2015. 4 Replies

HiMy 12 year old has been losing hair on the side of his head which we were sure was caused by him pulling it, which he was.  Now, however its clear he is losing by the fistfull every day. He has…Continue

Vaccines

Started by wclawvs. Last reply by tracieB Jul 11, 2015. 7 Replies

My five year old lost all her hair in August. She just recently lost her eyelashes and eyebrows. She  needs her kindergarten shots. We followed the recommended vaccine schedule so far. However, now…Continue

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

Started by JEANETTE. Last reply by CMG2 Jun 25, 2015. 16 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

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Comment by pterese on June 18, 2016 at 8:53pm

https://www.facebook.com/groups/143543962732869/members/

Please join my FB group LDN and Alopecia.  LDN is a safe and non toxic drug that is growing my daughter's hair.

Comment by pterese on May 18, 2016 at 1:14am

My daughter's regrowth after 14 weeks of using LDN.  Please join the group LDN Users if you would like to explore this non toxic, little known drug that helps heal the body with its own endorphins.

Comment by Teekay on March 16, 2016 at 9:25pm

Hi

My 10 year old son has AA - realised he has had it mildly since he was about 4, but now is losing more and more hair in the last six months.  I am so heartbroken for him - seeing him sobbing because he doesn't want to go to school - is just awful and I feel so incredibly guilty too - like it's a reflection on my parenting, which I know is stupid.  I was wondering if there are any support groups in Wellington, NZ, for other parents and the children with Alopecia?

Hope to hear from you. Teri

Comment by MummyWendy on July 22, 2015 at 6:52pm

Hi Mama Rissa and Aweiiss

Hope you and your children are doing ok. My 9 yr old daughter has AT - her hair fell out about a year ago. It's tough hey? Just thought I'd pass on a beautiful quote I saw online today - " I am not this hair, I am not this skin, I am the soul that lives within". Also - buying lots of hats & headscarfs have helped turn it into a bit of a positive for my daughter as she loves fashion and sees these extra shopping trips as a bonus of alopecia ;) ! 

Comment by mama rissa on July 22, 2015 at 2:33am

Hello everyone

my daughter is 7 i just found out a month ago my daughter has alopecia her hair just kept coming out we thought it was caused by rubber bands but that wasn't the case unfortunately this is so hard for me living it the kind of world we are in today everyone is so judgmental she believes having no hair is ugly because of the kids around her I let her know she's beautiful everyday and I even cut my hair bold to support so has my mom and sister this brakes my heart my little girl has to deal with this she get's so embarrassed when kids stare at her or ask her what's wrong with her hair but i'm working on that because i want her to be able to tell them with confidence and be able to be proud of who she is.   

Comment by aweiss on July 12, 2015 at 11:54pm

Hi All

Not sure if I am in the right place, I saw there was an area for parents.  My son is 12 and is losing large areas of hair now on the side of his head - it happened rather slowly, and we thought it was triciliomania, since he was pulling it. Now however it is coming out in clumps. I am trying not to alarm him, but it seems to only be speeding up. We see new dermatologist tomorrow and he is on a steroid creme, but I just want it to stop and it seems to be only getting worse.  I hope the creme is not making it worse.  However, he does seem to be getting new growth in the places that were lost already.  He has bright red curly hair so it seems even more obvious with him.  Could use some words of encouragement.  Thanks

Comment by MummyWendy on June 24, 2015 at 3:36am

I wondered if anyone has any experience of travelling internationally through Customs with alopecia. My daughter's passport photo was taken a couple of years ago before her hair fell out. However, we are travelling from NZ to Australia soon and she has chosen to travel without her wig. I just had a terrible vision of being stopped at customs and them not believing her identity! If anyone has any experience or advice I'd love to hear it. Thanks!

Comment by Alayna's dad on May 27, 2015 at 12:45pm
  • Hello, My daughter is now 12 with AU. I prefer to follow the advice of those that have been "suffering" with AA for here entire lives into adulthood. What I discovered. Most treatments are fruitless and painful. Those that  have had temorary success with, pounding needels ,cemical burns and  drug therapies are let down years latter.
  • Everyone's responece is defferent to treatment. But one thing children have in common is the need for acceptance, particularly from family. I like the idea from the CAP foundation. Growing selfestem not hair. That is what it is all about. 
  • I like the new trend that is happening the world over. That is acceptance. More and more people are comming out and exposing AA.

Comment by carolyn on April 6, 2015 at 12:01pm

Hello Trusting in God

DPCP is typically prescribed by a dermatologist that SPECIALIZES in  AA or AU & filled at a pharmacy capable of mixing the compound.  We use Cleveland Clinic. my daughter has had little to no scalp irritation, no blistersor other side effects been using treatment nearly 2 years.    General info:  http://dermnetnz.org/treatments/diphencyprone.html

Comment by Trusting in God on April 4, 2015 at 12:39pm

Carolyn Thank you for your post.  My 4 yr old has had AU for a year now and it seems every time their is a little tunnel of hope his Dermatologist crushes it.  I am going to talk to his PCP to see if he can help me by prescribing DCPC.  He is on vacation and will not be back for the next month so hopefully he does this and does not try to talk me out of it.  Do you know what exactly DCPC is?  Is it like a steroid or something totally different?

 

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