Replies to This Discussion

Permalink Reply by Melani Molina on March 22, 2009 at 9:20pm

Thanks so much for your advice on the psychologist. Sometimes I wonder if it would be worth going for just myself to deal. Genevieve is handling things okay right now, but we haven't had ugly comments yet. One of her friends noticed for the first time last week. But, it was just more of an observation, and Genevieve told her to keep a secret. This happened while she was at school. She dealt with it in her own way and I am proud of her for that. I am glad to hear that Lilly is excited about her biomatrix. I hope it helps you y'all have an easier time with all this. I wish you all the best!

Melani

Permalink Reply by Sara and William on March 8, 2009 at 6:04pm

I don't think I've been dealing with this for longer than you, but we started with a patch in November, and when my son went back to school after Christmas break, we got a call from the school nurse. You've already told your child's teacher, which we hadn't, and I think your way is better (the health tech insisted that we fax over a doctor's note THE VERY SAME DAY they called us...I was really not happy with that).

Anyway, I told Boo that the more hair he loses, the less likely it is to grow back, and that, really, now that he's lost a lot of hair and most of his eyelashes and eyebrows, it's probably never going to grow back. He's 7. He took it ok, but he's a boy, and I imagine that as many stares and things as he gets, it's probably way worse for a girl. Heck, my daughter got hold of the scissors and chopped her hair up when she was about 4, and when we had to get it cut short to look remotely ok, she spent a month worrying that she was about to turn into a boy. I can't imagine what this whole thing would have been like for her.

I honestly haven't figured out what to do with the looks and stares. I'm not sure which is better, that, or the one person (so far) who's come right up to us and asked what's wrong with him and if he's going to be ok. I just sort of make it up as I go along and hope it gets easier as it gets more familiar.

--Sara

Permalink Reply by Melani Molina on March 22, 2009 at 9:15pm

I'm sorry to hear that your son's school was being so anal about a doctor's note. That is ridiculous--they probably weren't even thinking about how that would make you feel. Sometimes people can be so ignorant.

Genevieve has probably progressed to about 8 spots now--some are completley bald, some still have some hair running through them. She experiencec someone noticing for the first time last week. She wears really wide headbands(they practically cover the entire top of her head) but a friend noticed and said something. Nothing ugly, just a simple observation. Geneiveve handled it on her own and I am very proud of her for that. However, she is still currently losing so I am sure there will be more comments to come. I am glad that your son is handling it okay. I think your right, it is just more socially acceptable for a boy to have no hair than a girl. I still imagine that it is very difficult for you as a mother--especially since he has lost his eyebrows and lashes. I wish you and your son the best and thanks for your reply.

Melani

Permalink Reply by Paige on March 9, 2009 at 1:08am

Hi Melanie,
My daughter started losing hair at 9, is now 12 and has no hair, lashes or brows. When she was in elementary school, she went in front of the class with the school counselor and her teacher and told them what she had. I couldn't have imagined a better response. Those little kids rallied around her. She had special permission to wear a hat to school (we went and picked out really fun ones). One day, they had a substitute teacher who told Rachel she'd have to take off her hat. The other kids came to her defense (I am surprised they didn't get detention) telling the substitute that Rachel had special permission and she was allowed to wear her hat.

Rachel is now in middle school and we recently went in front of her new class to explain alopecia. Once again, great response. People know that she has something....it stops the guessing and the rumors when she is just open about it. And, I think it makes her peers at ease with it, because Rachel is at ease with it. I highly recommend being open about it and letting your child know it's ok and it's nothing to be ashamed of.

When Rachel's hair was to the point I just couldn't hide it anymore (summer before 6th grade), we found a company called Apollo Hair Center. Though they were originally started as a mens hair replacement center, they had several women and children they helped. Right after Rachel started, they had another little girl (7) that had alopecia. It was a lifesaver. The wigs are attached with a medical grade adhesive tape and the kids can swim, shower and sleep in their hair. I think it made Rachel feel like she was just like everyone else. She never complained that it was uncomfortable either.

Now, I am doing her hair myself. I order the wig online (it's custom made to fit her head) and I do the taping myself. It's easy. Let me know if you need any more info. I am glad to share.

Permalink Reply by Melani Molina on March 22, 2009 at 9:06pm

Paige,

I am so glad to hear that your daughter's school has been so supportive. I think letting people know what is going on removes some of the mystery surrounding the condition and most people are then very accepting. We are not at the point yet where I think we need to inform her class--she still wears large headbands that cover the majority of her spots. However, Genevieve did tell me the other day that one of her friends from school noticed her bald spots and said something. Genevieve handled it in her own way and I am very proud of her for that, I was just hoping to get through the rest of first grade without incident. I am definitely learning from her how to be strong about this. How long did it take for Rachel to lose most of her hair, if you don't mind me asking? I think learning about other's situations helps me feel a little more in control even though I rationally know that I have none and that every situation is different. I wish Rachel a great year at middle school! Genevieve is only 6 and I think she is growing up way too fast! Thanks so much for sharing with me!

Melani

Permalink Reply by Pamela Schlosser on March 21, 2009 at 6:07pm

Hi Melani,
my daughter has Alopecia Totatilse. She is 10 years old. For her it started 4 weeks ago. It started as a small patch and progresses really rapiadly. Our experience with going to doctors has been very upsetting. The doctors have tried to blame it on her pulling her hair out for attention.
But after blowing up at a doctor ,he finally seen it wasn't self inflicked, that he diagnosed her with AT.
I am very involved with the school and talk with the teachers daily, keeping them informed with anything new and how my daughters day has been with the kids. Her teacher told us that if it was ok with Maygan that we tell the class so they would all be a team and help Maygan if anything in the play ground should arrise. We went home that night and discussed it with the family and Maygan said that maybe it was time to tell the classmates. She had been getting starres and people seeing that her hair would fall in her food and she was picking it out. So the next day I went in with my daughter to help her tell the class and to make it noted that no one could catch it by being around Maygan or that she was not dying either. The class was amazing and the feed back and questions these kids had for Maygan and myself was touching. They vowed to always be Maygan's friend and they would proctect her if they found someone bullying her in the school yard. Maygan is allowed to wear anything on her head with no questions asked .It was even more touching because Maygan has a supply teacher that is bald. Again it is automadic that we accume that when someone is bald they think that they have cancer.So the my daughters main teacher told me that the supply teacher has alopecia universal. It was amazing cause now my daughter has a mentor when she comes in to teach.
So all the teacher's at her school always have some type of focus or another for the third world countries, That they said why don't we have a focus on a student that needs our help. Maygan had made a presention about Alopecia and she did an assembley to all the classes in her school. It was a way of letting everyone know that she had this condition and that everyone is different . The postive and empathy these kids have for one another is great. The school even pulled together a Hat day for Maygan and presented her with some money for a wig. We are glad that we were about to share with the kids and this will let them look out for one another no matter what difference they are.

Permalink Reply by Melani Molina on March 22, 2009 at 8:56pm

Pamela,

Thanks for sharing your story with me. It sounds like you and your daughter are exceptionally strong people. It broke my heart to read about her hair falling out in her food. I am so glad to hear that her school is being so supportive. Genevieve's hair loss has not been anywhere near what Maygan is going through. Sometimes I feel guilty being upset about my daughter when I read about what some of the other children have gone through. But i guess that is just part of being a mommy, you want to protect your child from everything. I truly wish you and Maygan the best!

Melnai

Permalink Reply by Paige on March 24, 2009 at 11:24pm

Hi Melanie,
Rachel's first spot appeared Dec of 1996. It was quarter sized. By Feb of 1997, the entire lower half of her scalp in back was gone. For the next year, it would grow back in a few places, then become spotty in other places. Before she lost it all, I actually had hope it was all coming back. It was so thick and black, even in the areas that were resistant to regrowth. Then, it just all started to go bald again. It all went very quickly at that point. It only took about 2-3 months and she was totalis. About 6 months ago, it took her eyebrows and eyelashes.

Now, there was another little girl that started going to the hair replacement center (she was 7) a month after Rachel. Her hair all came back. You just never know. I hope your little girl will be one who "outgrows" this. If not though, you will both be okay and will be stronger people for having to deal with this. Hang in there.
Paige
P.S. - You said in your original post that your daughter is doing pretty well with this. She sounds like Rachel. I was always the one that was stressed out about trying to cover her spots. I think I drove Rachel absolutely nuts. Try to relax with it, especially if she is ok with it. You don't want to give her a complex from your fretting and I know they (our daughters) can pick up on it. When I was able to finally relax with it was when she decided to tell people about it. I didn't feel like it was the end of the world if someone saw a spot...they already knew it was there. Just thought I would mention it....looking back, its something I wish I would have done differently.

Permalink Reply by Maritza on March 25, 2009 at 6:43pm

Hi Melani my son age 6 has had AU since age 6 months old. he is sooooo confident, can't blame him, we nicknamed him handsome. He is a ham and loves going to the photo studios every chance he can get and we take him quite often. Just keep telling her she is pretty which I am sure is the truth and introduce her to others with it if you can. Let everyone know what is happening and what you think can happen and to please not discuss it in front of her. She has her right to privacy and shouldn't be put in a situation she in not confortable sharing. It's like someone asking you if she has started menstruating when she's 9 0r 10 right in front of her......that can be discussed over the phone, by e-mail or when she is not around, otherwise who knows the damage it may cause. Where are you located? I'm in Central NJ. We have meetings at St. Peter's Hospital in New Brunswick, NJ every other month and will be starting up a chat every other month that we don't meet soon.
Many people will stare, mostly children, because they don't know what it is and they will say things out loud b/c they don't know any better, but that's your opportunity to inform the child's parent of her condition, make sure you say it's not contagious and take it from there. We have had nothing but positive feedback. Many people start by asking if he is going to be okay (total strangers) and that leads me to believe that they think it's cancer and so I then thank them for their concern and inform them of his condition and we all smile because of the relief that thank God it is not what they thought. He meets kids at the park and right away they run off and talk and my son explains what he has if any questions come up.....they sometimes ask to touch his head (he doesn' t mind at all) which I'm not happy about b.c he suffers from severe allergies, but then I quickly wipe it off and no harm. Since they are curious we have to feed into the curiousity by letting them touch so that they don't become afraid of him. He is loved by sooooo many people, I believe it's more his personality than anything, being positive will make others want to be around you. Being depressed and sad all the time makes it hard for others to reach out. Get in contact with the Alopecia Areata Foundation and ask for a free DVD on a child explaining it to others and pamphlets you can hand out when someone is curious. By the way when my son had regrowth when he was 4 (about 75%) and then lost it a year later, it was even harder than when he first lost it at age 6 months. He was getting used to it and it fell out so fast, matter or 1-2 months that it hit us hard, but then we started with the positive thoughts and quickly got back on track. Health is the most important and we pray for health NOT for hair as my son will tell you.
Maritza Stern

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