Replies to This Discussion

Permalink Reply by Miranda on May 1, 2008 at 4:25pm

Lori, your daughter is much older than mine, and so you have already gone through things I haven't. I know it's hard to have pictures taken of your daughter. I didn't get pictures taken of my Twins since they were 2 and Della started having spots until my 3rd was born. I regret it now. I don't know what stopped me, it just did. If you think about it, the only people that will be having the photograph of your daughter are the parents of the kids in her class. I think that if those students know, and the parents ask about it they should be able to explain it. I think that the way most children those ages react the way their parents would. So far you say that her classmates are accepting of it, so their parents should be too. I haven't been so afraid of the parents as I am of the children. Sometimes kids don't always know better, and they are supposed to learn from their parents. I don't know how those parents are going to react. My daughter has what's left of her hair buzzed, and so I make up for it by putting her in dresses because she prefers not to wear hats and her wig. I think the hardest thing for me is people mistaking her for a boy. I have told my daughter, while trying to prepare her, that if someone teases that she is supposed to tell them that she can't help not having hair, and that she is smart, and beautiful the way she is, and if they don't like it then they really are not someone she should value as a friend.

Now, I'm not saying out your daughter out as a poster child, haha, but it's good that she helped raise money for cancer. I don't think there was anyway you could have prevented that. I also don't know of any way you could prevent it in the future. So many times people with alopecia are thought of to have cancer. I just think that maybe that it is just going to take more time for alopecia awareness to effected everyone before people don't jump to the more serious of the two.

On the MSN alopecia support group, I once read a post about a college student. She was saying that her biologist was predicting that one day all humans wouldn't have hair. She said that her teacher thought hair was no longer needed since we most work and live inside, and have heating systems for the cold winters, etc. I wonder if maybe there is no cure for alopecia because we are just evolving? Anyways, I thought that was kind of interesting. I don't know how I got from you daughter to this, but it's just an idea.

Anyways, Best of Luck and let me know what you thought of her school pictures!
Miranda

Permalink Reply by Cindy on May 1, 2008 at 7:25pm

Hey Lori, I am taking Sam to the hair club on Saturday. They do not use glue on kids. Instead they use a medical grade adhesive tape. I bet they can make a hair piece that will work with the hair that Alyssa has. There is a location in Woburn I think. It may be worth looking into.

I can see that Alyssa is very confident in who she is. While you want to take her lead I strongly feel that some decisions are best made by parents. I would have informed the teacher that you told Alyssa to wear her hat for pictures. I give Sam choices when applicable. But, Sam understands that when she is outside the house her head needs to be covered to prevent sunburn, catching a cold, etc. I guess I am one of the lucky ones whose kids loves wigs. But, at the same time if Sam says she wont wear a head covering then she misses out. I honestly have never been put in that situation.

Cindy

Permalink Reply by Mommy on May 1, 2008 at 9:14pm

Who knows what the right thing to do is? My daughter wears a hat when we go out but if we are at a friends house or something she will take it off and I let her do it. She has never chosen to go without it when we go to public places yet so I don't know how I would feel about it. I certainly don't want others to make fun or stare. If Alyssa feels comfortable then I perhaps you shouldn't worry about it yet ( with regards to the pictures). As for the other situation, a few weeks ago I had someone come up to me and ask if she had cancer. I said no and explained what it was. I was really shocked. No one had ever asked before and it made me wonder if that is what everyone thinks when they see her (since she is always wearing the hat). At first it upset me (this idea that others may just glance and make an assumption about her, that her no hair status was so obvious). A few weeks later and now I kind of don't care. I think participating in this site has helped me deal. There are too many other things to worry about that I don't have time to worry about the people we pass. As long as no one says or does anything rude we will be ok. Recently, we signed up for the National Alopecia Registry and had to go to MD Anderson ( which of course is known worldwide for its cancer work) so we felt a little odd. I know everyone assumed she had cancer ( I probably would think the same thing given the context). I felt sort of like a fraud- I didn't want others to think we knew what they were going through because the truth is we don't. Their situation is much worse indeed. We didn't correct anyone that spoke to us being friendly since the moment is brief and it doesn't really matter - what would be the point. We only told one parent who began sharing about her daughter and asked about treatment. If the guy in the band thought it was important for him to know about her condition then I guess he would have asked. If he assumed that she had cancer and it made him more compassionate to others than where is the harm? He probably would of had compassion for her alopecia as well. I guess I feel like if people want to know they can ask. If they don't ask then I won't spend too much time worrying about what they may think. Maybe adopting this philosophy will help you too? Let yourself worry more about it when Alyssa does. Hope it helps you to be a part of this place!

Permalink Reply by Cindy on May 2, 2008 at 2:34pm

Lori, I wanted to add that Sam is wearing that hairdanna and we just got our third. I cut the bangs out and now that she has no hair it fits well..You may wan to try that again. Sam will likely be wearing them a good portion of the summer and she finds them comfortable. I actually ordered the human hair one which is a microfiber material and it fits her much better and she said she actually prefers it. Just giving you something to thing about..I need to post the pics of her wearing them, but have bee lazy..Cindy

Permalink Reply by Mommy on May 2, 2008 at 9:39pm

Cindy,

Where did you get the hairdanna? Is this like the hip hats with hair? Thanks. Lynn

Permalink Reply by Alyssa and mom Lori on May 3, 2008 at 6:37am

thanks for all the input

We trimmed the bangs on the hairdana and they look awful now. I am going to cut them out altogether and try it again. I still don't like the color I have but if it works well I might consider ordering one of the ones with human hair in a darker color. However the color choice was my fault so I can't really complain. She does fine with regular bandanas which I want to try for swimming this summer. I'm going to order some rit sunguard to add to the bandanas to make them more spf proof. So far Alyssa's favorite head covering are actually these pretied bandanas that cover the whole head that are only $1.50 at family dollar. They are a little big so puffy in the back so I sort of tuck it in. She can get it on independently and it stays on well. The ballerina girl scarf from 4women.com only stays on if I help her with it and use the elastic as well. She also wears her Sundayafternoons hat while outside.

We just got a wig (vs topper) from childrenwithhairloss made from the tape mold I made. It is a little big so I'm mailing it back to Regina to get it made a bit smaller but that may work. The color isn't an ideal match but I think it will look okay for someone who doesn't know her natural hair color. There is also a store in Dover NH called Wigs Galore that we might visit next time we go to New Hampshire to visit my family. On the phone they said they are great at fitting wigs and and adjust/cut many wigs to fit and that they work with people with alopecia routinely. They don't bill insurance but are familiar with writing receipts to get insurance to reimburse. Alyssa likes the looks of the Jon Renau Emily wig but I think it might be too small so we were hoping they might have it in stock to try on.

Cindy - I spoke to Peggy Knight the over day. She offers two types of wigs depending on hairloss. They are too expensive for me to get now but sound good as Alyssa gets older and decides she wants to wear a wig routinely. She is planning a trip to Boston/Revere this summer. I told her I wasn't ready to get one at this point and she fully understood but said I am more than welcome to come see her without buying anything (just getting ideas for the future) She also has a rep that is based in Revere. I might go see her depending on the dates. If you are interested give her a call. The price for the wigs is rather high. I don't know about the vacuum wigs but the others are about $2500. Of course I keep hoping by the time Alyssa gets close to high school age she will have her own hair completely back. Which type of hatswithhair are you thinking about . I like the scarfabulous and would probably just go with black.

Permalink Reply by Cindy on May 3, 2008 at 8:16pm

Lori, I don't know who Peggy Knight is and wigs she sells..I highly recommend trying Hair Club for Men..We had our consult today and we had a really good experience. I have confidence that Alyssa can get a hair piece to fit her needs and it will be free...They use a tape for the kids..I would call your local club and talk to them. If you like the sounds of it, you get the forms to fill out which is really just a physician consent form and parent one. It is free and can't hurt to try..We cut the bangs out of the first two hairdanna's The 3rd on I ordered we left them in and I kinda like it. Her hairdresser took Sam at close yesterday and cut it all down for me and we tucked the bangs under or left them out. I also ordered this hair in a different kind of synthetic which feels really nice. Sam also likes the microfiber better and it is more form fitting to her head..Cindy

Permalink Reply by Cindy on May 3, 2008 at 8:12pm

Yes it is Lynn..Samantha prefers the hairdanna that is made with human hair, but Christine just got a new synthetic hair that works well with is and Sam loved it...She said she is getting patterned ones in and I plan to order one more in a pattern if they fit our style..Cindy