Alopecia World
www.alopeciaworld.com
Really Need Immediate Help
I've received some great advice and support on here and am so appreciative that this site exists. I remember being on the message board that a doctor (Manuel, I think) created, and that was a lifesaver when my daughter, Kait, was diagnosed in 3rd grade. Well, she is 19 now (tomorrow!)and all these years she has had hair come and go but always been able to cover the spots by wearing a pony tail. Now though she is in a massive hair loss period and came out of the bathroom crying yesterday saying that she just couldn't cover the spots anymore. Truthfully, I don't know how much hair she has left since she has all the hair framing her head and pulls that back but I guess the hair loss is in excess of 50%, and it just keeps going. She is afraid to wash her hair, she says, because she loses so much each time.
The road to acceptance is a slow, painful one, but I think we are moving along it, each grieving in our own way but generally coping. The time for a wig has come and she needs to do something fast. It is really important to me that this first experience be positive so while I could get something off the internet, I would prefer being in the hands of an experienced consultant. I've read about bonded toppers and think this would be great since she is going to college in January and living in a dorm so to have something that she didn't have to take off at night would be perfect. I suspect though that this isn't realistic since she is in an active period of losing hair. I just can't imagine her being comfortable taking off a wig at night and keeping it on a head (whatever they are called.) I guess she'll have to get over that.
I've identified a salon on Philadelphia's Main Line, Jude Plum, that specializes in hair pieces, and I will try to get an appointment right away. Can I expect to go and get a piece that is available immediately, or is it usually a series of appointments? I am willing to go to New York as well if there is anyplace there that is particularly great.
I'm sorry that I'm not even sure what to ask. I am finding this pretty overwhelming.
The road to acceptance is a slow, painful one, but I think we are moving along it, each grieving in our own way but generally coping. The time for a wig has come and she needs to do something fast. It is really important to me that this first experience be positive so while I could get something off the internet, I would prefer being in the hands of an experienced consultant. I've read about bonded toppers and think this would be great since she is going to college in January and living in a dorm so to have something that she didn't have to take off at night would be perfect. I suspect though that this isn't realistic since she is in an active period of losing hair. I just can't imagine her being comfortable taking off a wig at night and keeping it on a head (whatever they are called.) I guess she'll have to get over that.
I've identified a salon on Philadelphia's Main Line, Jude Plum, that specializes in hair pieces, and I will try to get an appointment right away. Can I expect to go and get a piece that is available immediately, or is it usually a series of appointments? I am willing to go to New York as well if there is anyplace there that is particularly great.
I'm sorry that I'm not even sure what to ask. I am finding this pretty overwhelming.
Replies to This Discussion
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Permalink Reply by Alisha Jennings on
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I am curious what your answer will be to wearing the cap over the top of your ears...??
That to me makes no sense and anyone ive ever seen in a wig you can see their ears! Also when I went to try some on the lady did not put the cap over my ears at all!
Anyways though, all the best to your daughter, this will be one of the best times of her life and I hope she manages to enjoy it!!
All the best to you in the new year.... maybe this year they'll find a cure ;)
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Permalink Reply by BaldGirlsDoLunch.org on
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Hi Lisa,
If there's a little spot of material in the wig to adhere the tape to, it works well. Usually that's a poly urethane piece. Tape comes in many sitckiness strengths, too. Though this sounds obvious, make sure she removes both sides of the tape protector to reveal the sticky part. In a hurry it's easy to forget to peel off the backing from one side. I buy tape from Wilshirewigs.com accessories section. There's a nice selection and good prices. Remind her that lotions on the scalp will defeat the tape.
Wishing you, Kait and the entire family all the best for the Boston years,
Thea
www.baldgirlsdolunch.org
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Permalink Reply by Dielle on
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I don't know if you have already bought her a wig or if she is unhappy with it but I have found that it is really hard to find a consultant that isn't going to pressure you into buying something. I have had a great experience with wilshire wigs (an online company). The owner (Kori) is a wonderful lady that has been truly amazing and helpful. The plus side about ordering online is that you can return it when you get it so long as you haven't worn it outside the house and if you don't take the tags off so if it isn't what you wanted you can try again. They don't give you your money back but they do give you store credit and you can return virtually every wig on their site (so long as it isn't a clearance wig). She has been so helpful more helpful than any of the wig consultants that I have met and she will answer any of your questions and give you some real insight into the options that would best suit you. She is truly one of the few that I know that is truly compassionate and understanding.
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I also like Wilshirewigs.com . I have not bought wigs from them, but I have had their ventilators repair and resize wigs for me. I drop them off when I'm in Los Angeles and they do them in a few days if they're not too busy. I buy all my wig accessories from them. Their special sales are excellent. I don't know Kori but good to know about her.
I agree totally about high pressure wig sales. It shouldn't be so common. You would think it's good business pratice to put "build trust and customer relationships" at the top of the priority list, but so many wig sellers are visibly frustrated if they spend time with a customer ( new or old) and do not close the sale within an hour.
Thea
www.BaldGirlsDoLunch.org
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Permalink Reply by Lisa F on
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An update for all you kind people:
Well, where do I begin? Because of Kait's stubborness about taking head measurements, we never got the wig that she liked from iwig fitted properly, and the 2nd wig did get adjusted but not till after it had been cut, and the adjustment made the bangs a little too short so Kait wouldn't wear it. On top of that, she was sleeping in the 1 wig she had, and by the time spring break rolled around, it was looking really bad. By this time too, she had lost about 90% of the hair on her head. Long story short: we went to Jude Plum Salon in suburban Philadelphia where Therese took us in hand, and showed Kait how to shampoo, dry & style the wig properly. She sort of buzz-cut what remained of Kait's hair, and it was such a relief. Of course, while we were there, Kait tried on some beautiful wigs, virgin European hair all hand-tied. I don't know who makes them, but Therese has been doing this for more than 20 years and I trusted her. The caps are a combo of silk and some kind of web-like material ( a tiny bit stretchy), and they have a 'non-skid' piece all around the circumference so that tape is unnecessary. We got one that week plus a cheaper wig that was dyed to the same exact color for sleeping. We've ordered another one, an exact duplicate, that is being made to Kait's exact specifications, and she will get it in May when she comes home. Therese probably spent 8 hours off and on during that week with Kait making sure that everything was just as she wanted it. I had been advocating for waiting until she came home in May to make any decisions, but when Kait insisted that she needed a new wig that week, I gave in. She does not complain at all, so if she felt she couldn't wait, I had to believe there was a good reason. From the limited reports I've had from her, she is very happy with the wigs now.
On the college front, she made friends the first day, signed up to live with two other girls next year, and seems to be doing quite well. I know that she does not let alopecia define her in any way. I still wish that she was more open about it, but maybe that will come with time. When we were sitting waiting at the salon the first day, I was trying to talk to her about different options including Freedom wigs, and she was rolling her eyes at me. I said "Kait, I know you don't want to think about this, but..." and she said "Mom, I DON'T think about this." We agreed that she would think about it that week and then i would leave her alone for the forseeable future. So, that's our deal.
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Permalink Reply by Carol on
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hi lisa, i have been reading your posts and feeling for both your daughter and you. sounds like you both are doing a terrific job in handling this. just my 2 cents inserted here. i have been au for over 25 yrs. now,lost all my hair after the birth of my first child. later on my nephew developed aa when he reached puberty. seeing how my sister handled her son's alopecia and seeing my own mom, drew me to this conclusion. it is hard for those with alopecia, absolutely. but at times it seems harder for those who love an alopecian!! lol. especially moms. especially moms of girls that roll their eyes!!! (ahh-but they all do). hang in there - you are doing wonderfully and remember -there will come a time,believe it or not-when you will be thinking of her alopcia more than she will be!!! and that is great!!!
good job mom!!!
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