Alopecia World
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Living and Treating AA
My daughter who at the time was 8 Nov 2016 was diagnosed with AA, like so many posts, articles, and treatments I did try the steroid injections, when the initial diagnosis was revealed to us. Its was complete shock to all of us. How Why what caused this??
AS you many know, they say stress induced, my daughter has been a chronic asthmatic since 2, and has been on many inhalants over the years. As a mom who listens to my intuition I know that the asthma played a roll just before her start of hair loss she it was fall and bouts of her asthma were acting up.
So i firmly believe that illness plays a role of the on set of AA. NOW with that being said, auto immune diseases do run in my family. My grandmother had a form of one as did I. Now no-one in our family had Alopecia or hair loss. partially what they say about auto immunes are true.
Since modern medicine in the state of Florida is "medicine" steroids, creams, ointments, you get the picture as we have all encountered. The first time at the demo, as we all cried, of course I wanted my daughter made whole immediately, so i didn't hesitate to their treatment. When I got home I did so much research on this disorder. No-one knows the cause of the onset or the whys? NOONE. Doctors can only predict and go by there protocol. which we all know.
I stated up spending great deal trying to find something for her to make this stop. I started to become writhing she educated so by the second demo appointment I know that these injections were just WRONG for her. My spirit was screaming at myself, as I wiped the tears from her face and mine and told her to be strong, this is going to help. I WAS LYING TO HER AND MYSELF!! So January of 2017 was the last time we walked into the demo. Now facing complete baldness, losing her eyebrows, all in a matter of less than 60 days, I started to notice the lack of life that is in my daughter. Her self esteem has crashed and she stopped doing everything she loved the beach, riding bikes, swimming, just going outside playing with her friends, playing dolls, and she turned to the computer something she can hide behind. This here has crushed me more than the hair loss, I feel as though I made decisions to hurt my baby girl. I have 3 daughters she being my youngest I can see her anger that she never had, she grabs at her sisters hair to lash out. When in our daily family prayer she is praying for eyebrows I had to make some serious decisions to help my baby.
My girls have always ate healthy not your normal kids. They love fruit (kiwi) vegetables (spinach) no soda, I make a lemon cucumber mint water, that she drinks all the time.
I started to research nutrition, and changing her diet. As this is the first part of the body healing itself and stopping the auto immune disease. Obvious her system is toxic and started doing a liver detox on her as the immune system is in the digestive system. I cut out sugar completely, and as far as fruit I limited that 2 2 a day. I got her tested in what she is lacking and what is going on through a sergeant. We found that she has a fungus in the digestive system, and as I figured her liver is toxic. So the new regiment I just started, is 3 enzymes in the morning and 6 different minerals 3 times a day.
Since we just started this that day, I noticed a change in her mood, she actually said she wanted to go to the store with me. Its this small steps I am rejoicing in at this point. If anyone has input on this approach to AA or has any info to share please do.
Many prayers sent out to you all who are going through this fight. Blessing CJ
Replies to This Discussion
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Permalink Reply by BB on
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Add cultured foods (not fermented). Fun to make at home & to your family's taste.
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Permalink Reply by chris_s on
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treatments available to children are pretty few and far between right now, some of the basic ones like topical steroids work for some people and not others.
Look into Narrowband UVB, my son had very good results (I have a thread on here about it)
People report mixed results with dietary change.
in the meantime what you CAN do is work on the mental aspect of the disease and teach her that happiness and well being are not dependent on hair
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Chris this is the toughest aspect yet! If you have some tips please share. I daily speak positivity and confidence in her. I wrote inspirational quotes on her wall so she can see them everyday, I try to show her other videos that she is not alone in this, we have tried to play dress up, I go meditate and pray daily to gain God's strength for her to keep her positive. Please let me know what you have done to help your son. Thank you
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it's easier said than done. Also a 6 year old boy places different weight on aesthetics than a 9 year old girl.
I try to really make it not a big deal in front of him, no obsessing over cumbersome treatments or unpleasant diets, no speeches on positivity and confidence (at least no more than normal). At one point we'd discussed trying lactose and gluten free, but no ice cream and cookies will make ANYONE miserable!
I push normalcy, sports, playdates, activities. don't hide who you are.
I think if I had a girl I'd get her a few different wigs to cycle through on different days. I say a few because that would allow them to still have "pretty hair" but also make it obvious to everyone else that it's a wig. If people think you're trying to hide the fact that you're wearing a wig (or any condition) it becomes a much bigger deal to everyone. Yes it's a wig. so what? If the hair is short and pink one day and long and brown the next it let's everyone know it's a wig without actually having to verbalize it.
but everyone's situation is different, you need to do what's right for your family. good luck!
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Permalink Reply by Dr. Hina on
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Hello, Your holistic approach is really appreciable. Proceeding on same line I would like to highlight that nature has answer to everything. We just need to be more observant. I treat Alopecia with Naturopathic combination s which are customized according to every persons case history and is completely safe for all ages . If you want to know about it in details do write to me.
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Hi Dr Hina, I would like to talk to you some more and see what we are doing now as far as her regimens, vs what you have treated. All the more information the better.
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Hello Carmen,
Please remember Alopecia is a treatable problem provided our approach is proper. We have to work in conjunction with nature never against it. - Attachments:
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Permalink Reply by Marisa on
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What about Universalis? Have you ever had complete restoration of a persons hair?
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Chris_s
I try daily to uplift her mental outlook on this, even suggesting we all cut our hair to make her feel better when we go out in public. She said no it's ok. I have showed her other people's stories with alopecia from YouTube. I do as much as possible every day to make her more uplifted. I don't want to have her go see a mental health doctor and start putting labels on her, that's just more on her. I'm open to any suggestions.
I have been trying to locate a local alopecia group that we can attend together, but no luck yet.
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my approach would be less alopecia-centric. yes you have hair loss, no need to revolve your life around it. wear a few different wigs for style but not to hide. etc
I think proactively taking a young child to a support group would only give them the idea that they need support
but you're best to judge what is most suitable for your child good luck!
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Hi Amie
Thank you for your input, as I stated I want to find a support group for her. As her mom I know her and her going
To the doctors, in all is just not a "fun" thing for her in her mind. I think the approach of her talking to others that can relate is the starting line for us. She also dosent think we understand because we have hair and the most important to her is her eyebrows. We did one day play faahion show where we all
Dressed up and out makeup and penciled on her eyebrows, she was happy, but as you know they come off. Then one day she asked before school
For me to pencil them on again, but by the time we got
To school they were a mess. So ever since then she dosent like that. Same as you she wears a wig outside,
Since we live in flordia it's hot humid beach pools,
So the 1st wig that I spent hundreds on with human hair had it died and cut because this was all new to us. It lasted 4 months. So we use that wig in. The pool or beach and a new 1 for her every day. In the house she dosent wear anything, sometime she will wear a stocking cap. Since I have other children there's kids always walking in and out so she will throw a hoodie on or a blanket on her head. I am
Going to try the scarf and wrap it cute. If we do then she will feel like she fits in.
As of late she finds comfort in her baby brothers little elephant and a pacifier. I was upset when I seen it in her mouth the other nite, I told her it will Mess up here teeth, please take it out but she said "mom it makes me feel better as to
To sleep" I don't no what to do about this now. She's looking for comfort in things. I build her up every single day as much as I possibly can. I am going to check out that website you gave me thank you. Blessings CJ
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Permalink Reply by NettyNurse on
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Hi CJ,
I'm so sorry to hear that your daughter is going through such a rough time. Her story reminds me a lot of my story. I was diagnosed at the age of 4, I'm 31 now and have embraced having Alopecia, but it took time. I'd love to be pen pals with your daughter if she's up to it. I can give you my contact information if you'd like! I live in Central Florida and would be more than happy to meet if you were ever in the area. Please let me know if there's any way I can help you and your daughter. I'd be more than happy to! :) xoxo Shenette
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