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Energy for researching treatment? When does it fade?
I am in year 6 of Alopecia with no head hair at the moment but fortunately all eyebrows and lashes. I am on my second bout of immune suppressant drugs ( the first set worked then it all fell out) BUT after reading the discussion boards I realised I have lost all passion for trying alternative treatments and even reading about them - maybe that is a good point to be at? Seeing as we have no known certified medical cure for Alopecia.
Interested to hear:
Do you still have the energy and passion for researching and trying alternative treatments?
Replies to This Discussion
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Permalink Reply by Ellen on
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Dena, what a wonderful story! I am a grown woman and only got AU about 5 years ago (I had AA 7 years before that but it grew back within a year)
I did not even start any of the conventional treatments as I am mostly into holistic stuff.
Later I met a few people that went through every conventional treatment under the sun, some through many of them and ruined their immune system completely and yet, as soon as they stop , the hair falls out and they look just the same as I do - no hair whatsoever. So your daughter may be lucky she has such a strong sense of what's right for her. G-d willing, she will grow a confident beautiful girl and find her happiness and remain otherwise a healthy person
Also, I just read another thread where someone was complaining that their mother was not supportive and was making the situation worse Your daughter is lucky that she has a smart loving mom with good intuition for what's right for her girl. All the best to both of you!
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Permalink Reply by Hayden Elizabeth Montross on
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My daughter Hayden has AA, she is 11, diagnosed at 4 1/2. Her hair has gone from a full head to barely even patches, bald really, to enough hair on top to cover the large bald areas hiding underneath. She's always been a confident little girl and I get concerned this will break her down. The past several years she's enjoyed having hair, while not a full head, enough to play with, curl, etc. The past couple of months it has been coming out at a rapid pace. Something that worries me with her starting middle school in the fall. (there are enough issues during those years even when you have hair!) we went to a wig specialist to get ideas - or really to be prepared with options should she want to go that route. She's had a partial wing in the past and like yor little girl, she'd rather not wear
It, preferred to be comfortable. She also found it to be hot. I've come to realize that, maybe it troubles me more than it does her... I know it bothers her, we do discuss it and Obviously she'd prefer to have a normal head of hair, but her attitude about it is phenomenal & simply has made me step back & let things happen the way they evidently were meant to. She recently flipped the hair she does have completely to one side (both sides are bald, w hair on top & we switch her part around, but it's plain to see she's mostly bald) and with her hair flipped all to one side, she said "look, for Halloween I can be a punk rocker, I can totally pull that off better than anyone!!" (all while admiring her look in the mirror) That struck me....maybe I'm more bothered than her... What an incredibly proud moment!!!
So sure, Alopecia...hate it! But stressing over it rather than just living life and being grateful its not something worse or terminal is not good for anyone. All while I'm always reminded, her best friend (whose Mom is my best friend), was born with a congenital heart defect and has had several surgeries and while doing Great, one day she will have surgery again..& maybe again... Hayden's AA is not life threatening... Be proud of your daughter and encourage her strength!! Many positive thoughts your way as a fellow Mom!!
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Permalink Reply by willow on
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Acceptance of self is the paramount of Alopecia, giving her a choice to stop if she wished is the biggest gift you could give to your daughter. I wished my parents would have given me a choice as their constant looking for cures made me really feel insecure. I wore that wig, it was not a child's wig, the kids teased me, pulled it off, and all around traumatized my childhood. I didn't do sports nor gym, as the wig would fall off, and the kids would tease me again and again. I applaud your parental way, and feel your child will have a chance to just be a child. Bravo and Blessings
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Permalink Reply by Bonnie on
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Fortunately, alopecia happened to me and not one of my children. I know it is difficult when we want the very best for our children and get so caught up in providing that, that we lose sight of their actually needs. Give your daughter a big hug for me. I'm so proud that she is learning to be happy just the way she is. I think I was so worried about how I would embarrass my children with my baldness that I couldn't see they thought I was perfectly cool bald. Tell your sweet girl that I'm with her, wigs are hot and itchy. I always keep a hat, scarf, or bandana with me to protect my head and control my body temperature. It is actually a tad addictive finding the perfect scarf for a certain outfit. Bandana or scarf shopping for summer with a trip to get ice cream after are what you too need. Have fun.
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Permalink Reply by Dorothy G. on
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Hi Dena,
I would say, find a different doctor. No one should be pressuring you and your daughter to trying more treatment, meds, psychiatric help, etc. It is totally your and your daughter's choice. Don't feel like you didn't do enough. You stopped when you should have. Your daughter has a great attitude. You are being a great mom by supporting her and not feeling like you have to follow everything the doctor suggests.I felt so much better when I said I was done with treatments. I didn't want to take the meds my doctor suggested either so I didn't.
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Permalink Reply by Dena on
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Thanks. We are done with doctors for a while. I am leaving it up to her if she ever wants to go back. She is doing really well, so I am just going to enjoy this time in our lives. Of course as a parent you are always worried about doing enough. I just think that comes with being a parent, but it feels good to hear the positive comments. I am not sure a lot of people who haven't been through this understand.
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Permalink Reply by HS on
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Michelle - if you do this, a couple important tips. My doctor had me get a shingles vaccination before I started this treatment, since I was going to be on immunosuppresants. also, a lot of folks worry about weight gain on the prednisone. I am 8 months into this, and I actually was proactive about it and met with a nutritionist beforehand and took my bloodwork with me and told her I was going on prednisone. I wanted to make sure that I had a good plan to so that I did not end up gaining extra weight. Also, I made sure I exercised regularly. The other thing is that you need to stay on top of calcium! Okay, that's all.
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Permalink Reply by michelle on
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Thanks Heather, I appreciate the helpful hints. I am seeing my rhumatologist in a couple of weeks and will show her the article. I have been doing DPCP since January...I have had another flare and have lost some of the fuzz that was starting to grow:(
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