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: 593
Latest Activity: on Wednesday

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Discussion Forum

Squaric Acid

Started by Lisa. Last reply by wclawvs on Wednesday. 10 Replies

Hi everyone I am new here! My name is Lisa and my son Dell is 4 years old.  He got diagnosed with AA about a year ago.  We have tired olux which made his hair grow back but then his hair fell out…Continue

Vaccines

Started by wclawvs. Last reply by Angie Feb 27. 3 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

Kids head covers?

Started by Lori-akaMimi. Last reply by Lori-akaMimi Feb 15. 10 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

How to deal

Started by bluesky. Last reply by Bestmommy1977 Jan 28. 1 Reply

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

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

Started by Marianne Peterson. Last reply by wclawvs Jan 25. 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

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Comment by MummyWendy on Wednesday

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 Wednesday
I don't know if accupuncture will help but I'm wiling to give it ago! Has anyone tried this?
Comment by Felicia on Wednesday
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 Wednesday
Wow thanks for all the info.
Comment by carolyn on Wednesday

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 Wednesday
Will do! Thank you.
Comment by MummyWendy on Wednesday

Good luck - let us know how it goes!

Comment by Igotluckey on Wednesday
We are picking up the blood test order tomorrow. I want to get to the bottom of this asap if I can help it!
Comment by MummyWendy on Wednesday

No we didn't have blood work done for the alopecia, but funnily enough she had just had bloods done about 2 weeks before her hair fell out to determine what was causing eczema and rhinitis (the answer was dust mites). Re hormones, there is a family history of thyroid issues so our doctor has talked about maybe getting her tested, but she is really terrified of blood tests after last time so this may take a while.

Comment by Igotluckey on Wednesday
Thank you.
 

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