In January I brushed my daughters hair and it started coming out in clumps. After four months, three doctors and blood test we were told it was alopecia aerta. Her baldness bothers everyone else more then her. She had super long curly hair. I wrap a scarf of hat on her to protect her scalp from the sun but it doesn't bother us or her. But her treatments are making her itch all the time and leaving welts and blisters. She so miserable for two weeks after her treatments . I really don't know what to do.

Views: 3355

Attachments:

Reply to This

Replies to This Discussion

Hi Cori,

I'm just curious, if it doesn't bother you or your daughter (the alopecia), why are you going for treatment? Sounds like DPCP (which, as it sounds like you are finding out, is so constantly uncomfortable..

I am so sorry about this difficult time for you & your daughter :(

Best of luck to you both :)

Once we found out we started the treatments. But as I learn more about it I'm questioning it. We have some friend who have used the dcp and they said it works. We want to give it a few months. Today we went to a playground without the scarf and all the kids wouldn't play with her. One of the parent did the polite herding away from her.

I agree with everyone. My daughter started losing her hair at 5. I was going to do anything to stop it. After a year of painful treatments and tons of money she lost it all anyway. At 6 she said she didn't want to do any treatments any more. We stopped and she is a very happy child. Now she is just the beautiful kid with no hair. She has learned she is unique and that is nothing to be ashamed of. She is learning at an early age to live with it and I think it will help her in the future if she never grows it back.

Hi. My name Is Mark Hansen and I live on the east side of Milw WI. My hair started falling out when I was 8. By the time I was 13 its all started falling out, until I had a few patches here and there that were even ripped out by bullies. My parents bought me a wig that I wore, hid under, for 45 yrs until I finally took it off 10 yrs ago. I have had aleopecia universalis, no body hair from head t toe for about 45 yrs. I saw a  Endroconologist at about age 18 Bec this is an internal medicine problem not a dermatelogocal problem. I have heard, read, on and off over the years about injections, lotions, etc. As far as I am concerned, I hate to say it, but there is No cure. And I know that you are going though just what my late mother went through with all my pain, all those years. But with all due respect, I think you are wasting your daughters time with those treatments.

Lastly, I was accidentally diagnosed with a underactive thyroid gland, Hypothroidism, when I 1991. It just took a simple blood test, for which I have been taking a generic medication. Hair loss or thinning hair is one of many symptoms of hypothyroidism. Butt then again, one can have alopecia without having hypothryroidism and have hypothyroidism with out having Alopecia. I know that it probably is alopecia. I'm not second guessing your doctor.  But unlessyou already have, have your daughter get a blood test and check that out. There are probably millions more pep in the US that have this condition (hypo or hyper thryiodism) and don't know it than have it and take something for it. Good luck with & God bless your child. Personally I think the worst symptom of this alopecia is ignorance so spread the word for her about what it is when you can.  Take care Mark S Hansen

Hey there. That's awful :( I was two years old when my mom said she was doing the same exact thing and my hair fell out in clumps. I did treatments (creams, pills) untill I was about 7 then didn't want anything to do with them. It was hard of course the stares and comments, but as long as you stand by her and she has an awesome support system she's going to be okay! I'm almost 21 now and I've learned to love it. I'm actually very thankful I went through it so young, because you live with it and get used to it. Not like if you lose it when you're a teenager and
It's the end of the world. Things
Happen for a reason ya know :) sending good vibes your way! If you need anything or have any questions, my mother wouldn't mind swapping emails with you! In fact I'm pretty sure she has an account on here to!
Also yeah that's why I stopped treatments they were awful and showed no results.

Put her on a strict anti-inflammatory diet for like 3 months .. http://www.drweil.com/drw/u/ART02995/Dr-Weil-Anti-Inflammatory-Food... Her hair will grow back ..  (gluten free, sugar free, lactose free) .. its not hard.

Totally, totally agree with this - go grain free rather than just gluten free.  SCD, paleo and GAPS diet follow these principles.  Lots of recipes out there on the internet.  Doesn't need to be restrictive.  After 18 months and 2/3 hair loss, my daughter's hair started to regrow after approx 3-4 weeks on GAPS diet.

Yeah .. I know .. I am not sure why the doctors aren't suggesting dietary changes. . instead of just giving steroids, which don't work for a lot of people. I lost 1/3 of my hair in about 6 months and was continuing to lose more, when i changed my diet. And the hair-loss stopped immediately.. And the hair grew back completely in a period of 3 months. I didn't go completely grain free though.. I was eating brown rice ..

I guess because diets aren't scientifically proven, doctors won't acknowledge that they may make a difference, and what works for one person may not always work for another.  The Dermotologist we saw in our local hospital suggested a psychiatrist and gave us a book showing how children decorate their bald heads!! As you can imagine, my daughter was devastated, which prompted me to research diets.  Apparent AA and celiac disease are often seen together.  So happy to hear your hair has grown back. 

I would like to offer an opinion of dissent.  I lost all of my hair when I was three years old.  I was put on a treatment of irritating tar (hydrodrithocreme was its name; I don't know if they still make it).  After being on it for a year and a half, my hair completely returned.  Though I had occasional spots of alopecia areata, my hair regrowth held for almost thirty years.  To this day I am so grateful that I had treatment at a young age because it worked for me, and I think it kept me from being bald until I was thirty years old.  Of course, you should do what is right for you and your family, but if it was me, I would tough it out awhile longer and see if it works.  

Her daddy and I have been talking. Think we're going to try it for a little longer. Everything I've read has shown a high rate of working, especially on little ones. I want her to be strong and embrace herself. But I also know we live in a small town with small minded people.

RSS

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

© 2024   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service