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.

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

Started by JEANETTE. Last reply by CMG2 on Thursday. 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

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

How to deal

Started by bluesky. Last reply by Debra (twin mom) Jun 10. 3 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

Kids head covers?

Started by Lori-akaMimi. Last reply by patty from NJ Apr 30. 17 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

Vaccines

Started by wclawvs. Last reply by Heartbreaking Apr 29. 6 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 13 year old son has Alopecia

Started by Wonder. Last reply by Wonder Apr 18. 22 Replies

For the last 2 to 3 weeks we have been seeing his hair fall out, and seeing a noticeable bald spot on the top of his head. It's getting bigger, and he has 3 more spots now. It's seems to be going so…Continue

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Comment by MummyWendy on Wednesday

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?

Comment by MummyWendy on March 25, 2015 at 6:33pm

Hi Felicia. We have chosen not to give our daughter (9) the injections. She seems too little to go through the pain! We'll let her make her own decision on that when she gets older. In the meantime we have had a wig made for her, and are trying to build her confidence that she is beautiful with or without hair. She now chooses to go without the wig quite often, and is comfortable with that. We've tried turning the alopecia into a positive (of sorts!) by showing her what a great choice it gives her - Go bald, wear a wig, or decorate - she has an amazing collection of headscarves and hats, and we recently had a Henna Crown done for her by an amazing lady (check out Henna Heals online, they are global). This got her lovely bald head a lot of very positive attention and did a lot for her acceptance of it. Good luck.

Comment by Igotluckey on March 25, 2015 at 2:27pm
I don't know if accupuncture will help but I'm wiling to give it ago! Has anyone tried this?
Comment by Felicia on March 25, 2015 at 2:15pm
My daughter is 10 with Alopecia she is losing more and more hair . She was receiving the injections but now she doesn't want them anymore because they hurt. My heart is breaking and I don't know what to do. I don't know know if I should have get injections, get a wig or what. Any advice or guidance would be greatly appreciated. Thank you !
Comment by Igotluckey on March 25, 2015 at 10:00am
Wow thanks for all the info.
Comment by carolyn on March 25, 2015 at 9:50am

DPCP WORKED for us. Same as most of you.  My daughter was age 11.  Started as small spot but within months totally bald including no eyelash and eye brows. I was devastated - obsessed to find medical treatment that works including trying methotrexate (short term - with no result). Tried 4 Demo Dr.s before before finding one that made a difference at Cleveland Clinic in Cleveland Ohio.    Today 2 1/2 years later she has a full head of hair.   The treatment that worked was DPCP (Applied to the scalp twice a week/not fda approved/not covered by insurance but not not expensive/need a demo Dr that willing and knowledgeable enough to prescribe/ we use Cleve Clinic in Cleveland Ohio) DPCP is prescribed in an increasing strength over several months designed to cause an mild irritation of the scalp.  In layman's terms it tricks the immune system into attacking the chemical applied to the scalp rather then the hair folical.  ALSO important it is use in combination with daily Vit D (5000) (have Dr check vit D levels very common that AA patients have very low Vit D), Allegra 180 mg daily, biotin forte with zinc. Stress reeducation and physical activity - very important.  To date over 2 years has no side effects.  Only down side.  Life long treatment.  If she gets sick (flu or severe cold) or stressed (anxiety) or prolong period of time will lose a little hair in spots but so far has always regrown.  STRESS: physical or emotional is a factor for us.  Don't let Doctors tell you it is not - it is.  We also added zoloft 50 mg. Losing hair is stressful - period!  Everyone is different. But as a parent, when we were first learning about AA I wanted to read a post like this one I am writing...specific instruction of what worked for others.  AA is an auto immune condition, typically genetic .  In our case my husband is diabetic, I have vitaliogo and my mother RA. Spend time educating yourself on triggers and solutions for any auto immune conditions in your child genetic family tree.  I hope this helps!  I been there - It's so hard for others to appreciate what us mothers go through!  School bullies, wigs, hats, overcompensating with material items, friendship and boyfriend worries.  Moms remember take care of yourself too - your kids will look to how you are managing your own feelings and stress over hair-loss.  Be as honest as age appropriate with your child. I am not overly religious but admit that when I had no where else to go but down on my knees to pray and turned my stress and worries over to god believing that everything is happening for reason because I had no other options. I felt some relief and found strength to rise to this challenge. Educate yourself and find a Demo Dr that specializes in AA and hair loss.      

Comment by Igotluckey on March 25, 2015 at 12:46am
Will do! Thank you.
 

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