Maria, you left me hanging..What is the problem now? You can always email me privately...I am off to get Samantha..I treated myself to a facial and shopping spree today..I feel relaxed..Cindy

Wow, Mia is a doll!
My new book, "If Your Hair Falls Out, Keep Dancing," has a lot of information in it devoted to girls with alopeica. It's a great read and I think you and Mia might find it fun and valuable. For more info, got to my page; there's a link so you can order it, or cut and paste this to go to the web site: www.leslieannbutler.npauthors.com.
Good luck!
LeslieAnn

Oh Maria, Samantha had treatment 2 for the week and she woke up with a rash all over her body..She soaked in the tub for about 20 min or so today and I creamed her up..I am getting nervous that this is not going to work. I have a prescrip so I put it on all over her body and will give her another bath tonight to soak her skin. Her head did not have the rash that her body had. I don't want to page the doctor on a Sat since I know what is going to tell me. I think I am going to call her on Tues. Enjoy the long weekend..Cindy

Maria, the rash is better..The only thing I am wondering is if she picked up something at the class trip to the zoo on Fri, but I really don't think that is the case. Just let me know when you want to chat and I am there...Enjoy the nice weather..I am in the mist of planning my trip to NY to see my friend in Bayshore..Hopefully, we can meet up when I come down this summer..Cindy

Maria, have you started that herbal stuff again? I emailed the woman a list of questions today...Cindy

Maria, sorry to hear you are going through a rough patch with Mia..I want to get Sam in an energetic mood and send her a video message. It may help.If it is any constellation, Samantha has complained about about itchy eyes too and rubs..Now that her lashes are gone, not so much anymore...Let me know when you want to chat..Pick a night....Cindy

How is it going Maria...Sam had treatment last night and woke up fine..I am chalking her rash up Sat to a visit at the zoo..cindy

Maria, is everything okay? It is not like you to post during the week..

Anyway, Sam broke out in another rash 2 days after her Tue application. I called the derm and they saw her yesterday. The doctor said she had good news and bad news for me when she came in. Sam saw the resident first. She said the bad news is she has a rash. The good news is that this good be a good thing. That she believes it is the result of meds. She said her body has been upset and is reacting and that she has seen patients begin regrowth after such a rash. Sam practically has a full body rash. So, now we need to clear up the rash, give her immune system a chance to settle down and in about 2 weeks we will do another application at a lower dose. We cut the dosage in half. If she gets a rash after the next application we will have to stop the treatment. And then you will see me go BATTY.. Cross your fingers that it does not happen..It was good thing I brought her in, and not to her pediatrician. Have a good weekend!!!! GNO today to see thee movie...Cindy

maria, want to chat?

How did it go today?

Hi Maria,

Your kids are beautiful, must be a blast celebrating halloween in America. My husband has travelled all over the U.S. but has not been to N.Y. yet. We hope to go to the U.S. maybe next year, to travel around. Anyway, my daughter Jennifer is now 8 and she has had Alopecia since she was 2. She wears a Freedom wig with real hair its fantastic. How is your daughter feeling about having Alopecia. Jennifer is now used to it, but we have had some bad times. We are using DCP treatment on her head every week. Over Christmas she had a lot of hair growing, but a couple of months ago it all fell out. So we keep going with the DCP and hope for the best.

Hi Maria
thanks for your comments....and I am thrilled to see a fellow Brooklynite on the site.Where are you from? I live upstate NY now, but grew up in Windsor Terrace and most of my family is still in Bklyn....small world huh? Your family is beautiful, and Mia is absolutely adorable. Look forward to chatting more.........
Eileen

Maria, how is it going? I am having Maria withdrawal. Where have you been? I took Sam back to my friend in CT and she had a great experience, but no crying this time. I decided to start up again on Sat. Today she has a mild rash just on her legs, but I am not going to stop. She appears to showing signs of regrowth and I am afraid to stop now. I will see how she is by the weekend. Today, I saw a small area of colored hair and she has lots of white hairs coming in now in small groups and some colored strands.I am hoping this could be the beginning..I hope we can chat soon.Please let me know how Mia is doing and your mom.
Cindy

That would be awesome Maria! Spent many an evening in HS hanging around Bensonhurst..went to Bishop Ford so many of my buddies were from Bay Ridge and Bensonhurst...say hello to the old neighborhood for me!

Hi, Maria and Mia. Just thought I would come by and see how you're both doing. I hope to hear from you soon. Wishing you great joy and good success, rj. :-)

How are things going Maria? How is Mia?

Maria, I logged on and saw you as featured member..I love your new photos. Did you have a great time at the play. I have a tentative trip to NY planned for Aug 21 for a few days and hope we can meet up..I hope things are going well. Miss chatting with ya..Sam gets her new hair on Aug 12th....Cindy

Maria, I am going to make you feel better about Mia's wig right now. Samantha got her hair yesterday and we talked about the cap. She told that had she been there the day we ordered Sam's hair she would have measured her head vs make a mold. The cap is different and she said she prefers the way it fits. Sam's cap fits the circumference of her head and I bet the one Mia got goes down lower. She showed me a diagram of the cap. Anway, the hair is beautiful and it is a replica of her old hair to a tea, just left longer. We are going back tomorrow because I want it cut a bit shorter and is seems a bit longer in the front and we did not thin it and I want the front tamed down some more..Hope you are enjoying your company. I am going to be coming down to NY Thurs..Let me know if you want to meet for lunch Thurs. Maybe we can meet in Bayside if that is not too much. I have a place in mind or I can meet you in Garden City....I was going to stop and see my dad, but I am not sure that is going to happen now. I am leaving Sunday and going to CT to see my friend. I can also meet you for breakfast on Sun if it is somewhere on my towards CT. Let me know what you think..

hi Maria,
my 5yr old daughter is going thru her 2nd time around of losing her hair. first started last nov. all grew back by june of this year and has now been falling out again for 2 weeks. would love to chat with you just to see how you've handled this situation. your daughter is so cute. talk to you soon.

Megan

hi Maria,

i see that you live in brooklyn. did you ever go see a dr. in garden city named Theodore Daly? we were recommended to him from one of our 7 dermotologists that we've met with. apparently he only deals with alopecia patients. we are going on sept 17th. thanks

i wasn't online but am now, but may not be in a few as i'm trying to get the kids to sleep. i have a 3 yr old son as well as my 5 yr old daughter. it's 9:30 and they are totally wired. maybe we can set up a time to chat or call each other.

Hi Maria,

I just want to say thank you for posting on my blog and sharing your own personal story with me...I know how your heart breaks and I am truly sorry Mia had a rough first day and I do hope things get better for her. I am glad that I am not the only parent out there, it makes it so much easier to talk to some one who really understands...thank you again...Maria

Maria, how did it go this weekend and how is Mia doing in school?

Maria, I am sorry to hear that Mia is having a hard time at school. Let me know when you want to talk and I will pop on. I pop on in the afternoon somedays before Sam gets home...Hang in there and be strong...

Urg, Samantha got invitied to a swim party this month. I had to talk to her about since school is in session. She said she would wear her wig in the pool. When she has swim lessons on Friday she is going to wear her wig with a swim cap and see how she likes it before I reply. I know I can't let her AA get in the way of going to a party, but I won't expose her to the town. We have been fortunate to have no problems so far...talk to you soon..

Hey Maria, I hate to hear Mia is having a hard time at school, I wish there was something I could say to ease the pain for you and mia, but unfortuantley I dont think there is...Savanna has always wore her hats everywhere, I just could not get her to wear wigs, and believe me I have tried, I have got wigs from LOL,and other sites..bought some wigs and still no luck she refused to wear them...she recently got her new one from the Kids Club, she really likes it...she wore to school twice and wore it to the drs. ofc today...I was so proud of her. Maybe it will just take Mia some time like it has for Savanna.. hopefully her hair will just grow back...Sending love to you and Mia...Stay Strong....Maria

hi Maria,

how is mia doing? paige went to ballet today and would not wear her hat. she wore a head band with the entire top of her bald head exposed. i was on the verge of a nervous breakdown and i had my 3 yr old son hanging on me the whole time. then i had my mother in law call (who calls on a daily basis to see how paige's hair is) my response at this point is "it grew 2 inches since you asked yesterday" i know she's just asking because she cares but sometimes it's too much! she told me that she knows someone that lost their hair when they were 7. they started taking cod liver oil 2 times a day and it all grew back. so of course i bought cod liver oil today even though i know it's insane. i hope mia's doing ok. she looks so cute in your pictures. talk to you soon.

hi Maria,
paige was fine during ballet--my stomach was in knots. most of the girls were in her class last year so they are used to seeing her with a hat. the first time she took her hat off after the first hair loss, was at her recital. i have a picture of that on my page. i think next week she'll be wearing the hat again to ballet. one of the mother's was like" her hair came in so nice over the summer" i was like "are you kidding me? " she is almost completely bald on top. i give you credit for not going off on that complete mess of a mother. what is wrong with her? before this even happened to paige, we were always teaching her how to accept others and never make fun of anyone!
ok, so the cod liver oil comes in little gel caps. she took 2 yesterday and 1 today already. it's cracking me up. if only she knew how nasty it is. i hope mia has a better week. she is so cute.

ps. paige wants to be a mermaid for halloween. what do i do with that head?

I see you are online..do you want to chat on aim>

Hello Mia, Just checking on you and Mia. Is she still having a hard time in school?? Hope u two are doing good!!! Maria

I am glad that Mia is doing better in school, I know how that relives so much pressure off you too. I know how hard it is for them to adjust as well. Savanna wig is from the kids club and she is really loving in, she has wore it almost everyday since she has had it, there has been a couple of days she has just decided to wear her hats to school. The measurements are a lil small the the hair line in front is a lil thin, but she is having a new one made and I am hoping it will be a better....this is the only wig that savanna would actually wear and she has several of them and they have all be used mainly for play and dress up....Good luck and stay strong, talk to you soon....Maria

How is the anthrillian going? I am feeling bummed out..I was so excited to see A eyebrow for weeks and now it is gone...OH MAN...But, I see some on other one.

hi Maria,
i think you mixed up names--my girlie is Paige. she's doing ok. someone took her hat off at school and she was really upset by it. she is almost completely bald at this point. we are doing olux-e only at this point. we started 2 other medicines but they were causing her major discomfort and i just don't want to do that. so we stopped rogain and targertin. we actually went to a chinese medicine place yesterday. it was pretty interesting. his comment about treatment was that it's basically a band aid for the underlying problem that exists in the body. he said that he's had about 10 cases of alopecia in his career and feels that he's been able to help about 1/2 of them. he feels that it could be the body's inability to handle mercury that is in the body. everybody has levels of mercury--paige was tested for this and her levels appeared to be normal--the dr was saying that it could be mercury that is in other parts of the body not neccessarily the blood only. i thought it couldn't hurt to go to a place like that. he gave her some supplements that are supposed to expel metals from the body. no side effects and they are all natural. who knows?

how is mia doing? hope all is well. i think Amber is the little girl in Australia?
talk soon.

HI Maria, you have on tough kid. Have you sat done and talked to her about this treatment being the best thing to try to make her hair grow. We have told Samantha that when her head gets red and itchy her body is telling the bad guys to go away so her hair can grow. Sam is pretty good about treatments, but telling her that seemed to make her happy and distracts her from the irritation. During the hours you put the med on maybe you can do a special activity with Mia to distract her. For Sam when we put the stuff on we usually bake or read a book. It keeps her from touching her head to the let treatment dry. Make the hour a special time with Mia. I wish I had some magical powers. Have you thought about getting her a my-twin doll that has Mia's hair loss. If she likes dolls it may help...Sam has a doll from them, but she is not big into dolls. Have a good day.

Maria, Samantha is not minding the cod liver oil at all..All the reading I have done said it is good for hair and nails as well as lot of other things and it serves as an anti-inflammatory to fight the white blood cells. If you decide to try it get the Carlson's lemon flavor. Sam takes it in a medicine cup. I ordered the lozenges in 5000 mg too..

hi Maria,
how is Mia doing? Paige is completely bald at this point. her eyebrows had fallen out too. now strange things are happening. her eyebrows are growing back but they are brown. in the past she was extremely blonde with really light eyebrows. then last night while she was sleeping, i was staring at her head with a flash light. weird, i know, but it's the best way to see if there is any growth. her entire head is covered in a layer of fuzz. this is the way it happened last time when it completely grew back. i have no idea if this is growing back for sure, but i have such a feeling of hope right now.
how are things at school for mia? Paige has her school picture friday so that's on my mind. hope all is well.

Awesome photos! I certainly wish your family continued joy and success. :-)

How Maria, How are things going with Mia. Are you still doing the Anthrillian?

Cindy

Thanks Maria..You have a wonderful Thanksgiving too!!

Maria, I posted some regrowth pics..How are you?

Maria, I see you are online..meet me in aim?

hi Maria,
how was your Christmas? ours was great. i'm happy to relax a little now. ok, so here's my latest thing. i started the kids on a gluten free diet. it's pretty hard but they seem to be adapting ok. i've read so much about it and bought some books today to better understand how to live without all those foods. i've seen some stories on line of people linking celiac disease with hairloss. who knows? how is mia doing? email me the pictures soon if you can. talk to you soon.

How is everything going Maria? Did you have your apt yet?

Hi Maria! Nice to meet you. My daughter, Kendall, is also 4 (will be 5 next month). Kendall's alopecia happened very rapidly..we've been dealing w/ this since 10/08. It took a couple of months to overcome the shock before I realized I needed to seek a support group. Have met lots of nice people on AA. How's Mia handling what's happening? I'm surprised how well Kendall has adjusted to being bald, including losing her eyebrows/eyelashes/nose hairs (her hair was past the middle of her back). We have hope that it will all return, but preparing for if it doesn't.
Mia is such a cutie..

Hi Maria, of course we remember you! We will definitely be attending the Alopeciapalooza this August. I've already booked our room and I'm really looking forward to it. Will you be attending?
I love the pictures of Mia, there are so adorable. She makes a fantastic Snow White!
Have a wonderful Valentine's Day and I hope to see you in August!

Hey Maria, How was your trip to Florida? We got back Wed and then Thurs was Sam's birthday and party. Needless to say I am wiped out for the week. I am trying to plan a trip to Ny in April to see my friends. I will keep you posted if I do. would love to meet up if we can.Let's chat online soon..Cindy

hi Maria,
are you guys going to the alopeciapolooza in philadelphia in aug? we're going and Paige is so excited. let me know if you guys are going. say hi to Mia.

my sons in new york on business and he's been telling me to shave off my spars fluffy regrowth for years.
I recently received a freedom wig..suction wig..vacume wig.
My daughter is growing her sons hair in order to donate it for some child with Alopecia.
They can swim in it too.
Although I have gone without hair due to allergies to synthetic wigs..besides, they are way too big for my head.After all, they are really made for people with hair.
Suction wigs are the closest thing to having your own hair...so I'm happy.
I don't shave every day..yet do so when I wish to simply play fancy dress for myself...cause deep down..we still want to see how we look with hair.

Such a pleasure to meet you guys!
Give Mia a big hug from me!

You tell Mia that I miss her too! It's been so strange seeing ordinary kids when I'm out now - ;-). I'm all alone in being bald again! LOL! Love you guys!