LOL, im laughing my butt off over here. Thats EXACTLY why I need you to help me. :)

Hi Trina :) Nice to meet you. The supplement we use with Lynnea is called sterol, and you can buy it at most health food stores. There is a specific pediatric type (to keep the dosages correct for their systems) and you can ask your health food store rep about that type. If they don't have it, sometimes they can order it in. We get our supply through our naturopath. He also had her on a few other things for a while. Something called 'thuyja' because she'd had vaccination stress, and apparently it helps cleanse the system, and on some drops for her liver to aid in cleansing the toxins, and some acidopholus for her intestinal track, so that she would keep the good bacteria and absorb her nutrients properly. It's all made a big difference in her health. I hope this helps. It's nice that your little girl has you as a role model if she developes alopecia, as well.

Janna

Yes, biotene was something that I want to try with Nnea, as well. I haven't found it yet. I think I'll need to look into it.

I noticed that you mentioned you were going to purchase 'castol'. Careful! It and sterol are two very different things :). I think some people use castol to bring on labour.

I know how hard it is to watch your little girl go through something that you already know can be terribly troubling. The fact that you have it doesn't ease the concern you have for her own personal struggles with it. The cool thing is she can look at you and say "That's my mom, and she's beautiful and I'm proud of her, and I can strive to be just like her", and she'll be able to relate fully to you, if it comes to it. It could be that this will just be a flicker of alopecia, and it won't show up again.
I keep waiting for the day when Lynnea looks at me and says "why am I different than you, mom?", and I half fear and half hope for it because I'll be able, then, to truly gauge how she handles her physical difference. And, you know, if she really becomes uncomfortable being the only one in the family who's bald, I'd shave mine off in an instant if it makes her feel better.

I have a friend who was trying to encourage me regarding this particular idea who said to me "Of course you can support her that way! Maybe you can even raise some money for AA by doing it...not that I think every woman should shave her head at least once in her life. Oh wait...I do!" lol. It might be in my future. Who knows!

Wow, Trina, of course I'd call you beautiful. You're gorgeous! I find it amazing just how many people who have alopecia are just stunningly beautiful.

Trina, you and your daughter are stunning..How much hair loss does she have? Do you mind if I ask you where you are located. I am in Mass. Cindy

You Trina, I think having kids involved in sports is a great self-confidence booster. It really helps mold them, especially when they love what they are doing and are so involved in the sport. Samantha has been figure skating since age 3 and she is preparing for her 2nd competition. She loves it and is good at it. In addition, she has extra supports there that really build her confidence. Samantha also loves swimming and her teacher wants her on her swim team come the fall. We will see, but these are the people I need in Sam's lives right now...Good luck to in the competition. Cindy

I would love for our children to discuss this. We know no one her age or any one at all beside online that may be dealing with the issue.
I am checking on the conference. I really want my daughter to go! I'm checking into it. Delete Comment

Hey Trina, I bough the Biotin shampoo today and a multi vitamin with that 63 mcg's as well as omega, etc..I hope it can do something for her..Cindy

Hey Trina,

I wanted to drop by and say hi to you and see how you were doing? How is your daughter?

Hi Trina, your daughter is a very lucky little girl. When you think of it, she does not have to go through this alone and neither do you :). I am sure that you will both teach each other alot about self-acceptance and what is really important in life. Take care and keep in touch. Cheryl

Hello,
Hope things are well with you and your daughter. I was reading the dicussions and saw where you were talking about boitin? Can this be ordered online? the topical treatments given to my daughter by the dermot. is not working for her but against her. Looking for something to use!

Hey Trina. I'm in Baltimore, near White Marsh Mall. Where did you get your brows done? I'm going to a consultation in Columbia on Tuesday.
By the way, your little girl is BEAUTIFUL!

Hello Trina, I just saw that my 6 year old has a small dime size patch. She's just like..."oh...ok".

Now I know how I deal with it...ME, but her...GOODNESS! I'm more than ever on this MISSION for awareness and EDUCATION! so it can be a normal part of EVERYONE'S day, to see someone with patches or a bald woman.

Take Care

Thank you for your words...

Im good girl, I've just been busy as heck. I plan on getting on here this weekind and catching up though. :) How are you?

I am looking for another dermatologist now. This will be the third time changing. They just seem that they dont care. They just say "...there is no cure... put this on it and see me in four months." I am ready to go to the specialist in Tampa I've heard about but dont know much about.

He told you to use Elidel? My daughter currently uses that on her arms to help her eczema. Maybe will apply it to her scalp, although she doesnt itch much.

Thanks for the info on the Biotin and the other. I will let you know how it works for us.

Your little girl is absolutely gorgeous!!! Like her moma!! :)

I know it must be hard to have a child go through this hair loss stuff. It is bad when we have to deal with it but you know what? Kids are so resiliant, they do better than us alot of the time.

thanks for your comment, much appreciate you taking the time to read me. also, yeah, so true....love that we can just go to the store and buy hair. its actually pretty amazing that we can change our hair whenever we feel like....makes us all stronger... kids, adults, all of us. be well..hearts and flowers.

Hi. Hope you and your daughter had a great weekend.

I went grocery shopping over the weekend and was reminded of a juice called Noni. Shortly after my mother had a stroke she started on this juice along with the rest of my family. It works for the entire body.
My mother used to be tired, have aching muscles and all sorts of things.. Well a just a few weeks after consistently drinking the Noni juice she had energy and less aches every day.

I bought some for my daughter to start taking (there are different name brands depending on which you have, my daughter takes one teaspoon for every 17lbs she weighs). The guy that was telling me about it over the weekend said that it is very, very good for the immune system. Which we both know is the root of alopecia. He had knowledge of alopecia and said that this would be great for the immune system. On top of that it has all sorts of vitamins and minerals that are just good.
I myself can’t stomach the taste but they also have it in capsules and candy. I will be picking up the capsules for myself. Per the gentleman it can be added to a drink instead of taken directly and it won’t loose any strength.
Maybe you should read up on it and add it to your daughter’s vitamin source (http://en.wikipedia.org/wiki/Noni). You can get it from a health food or vitamin store.

Sharing the knowledge.
Let me know what you think.

Does this sound like a sub for biotin?

Hi Tray,
This is Dr. Li from Merry Clinic. Thank you for visiting our website.
Our Biotae treatment is designed to balance body system, supply essential nutrients for the hair. It helps stimulate the follicle cell to produce the hair and prevent the hair loss. It treats the root of alopecia without causing any side effect.
For your daughter's 's condition, I suggest her take 4 Biotae capsules each time, twice daily along with using Biotae Scalp Oil 2 times daily on her bald patches or thinning area. You can open the capsules; mix the herbs with juice to let her take if she can not swallow the capsules. The internal treatment is much more important.
I also recommend her to take Children's vitamin together with our herbal treatment.
Usually, her hair loss will be under control within one month. She will have some hair growth in about 2 to 3 months.
If you have any question during the treatment, please feel free to contact with me.

Please refer to http://www.merryclinic.com/hairloss/treatment.htm

Dr. Li

I see that you and your daughter went to the Wizards game. Was that this year? Not sure of the players name but he also has alopecia right. I would like to take my daughter to the next one. I saw this on NAAF but there were no specific dates. Please inform.

That would be nice. I'm not that close though. We are about 3 1/2hours away from Disney.
I will find out if there is a chapter in my area.
Have fun at Disney. Jazz and I are taking another disney cruise next week! Your dauhter would love it. I think i had more fun than Jazz did. lol.

That Noni really works! let me know how you feel after! Your energy level will go from 0 to 100! My mother went from getting tired from walking to the bathroom to walk a flight of stairs with no problem at all!!!!
I have problems sleeping, I am going to get the capuls for myself.

ok. its just hard sometimes but when im with my family its like alopecia doesnt even exsist to me and i just have fun.

(the previous message is from Jazz last night. She thought she was logged in but was still under my log in)

(jazz page)

That is exactly what i was doing today. looking for a new Dr. The ones we have been too just dont seem to care. they give me samples and say see you in four months.
actually looking for pediatric derms but not many in my area.

i have not bought the medicine just yet (that i told you about). my friend is still researching it but she is taking the Noni. I think i'm just going to order it.
have you ever heard of or used Aloptin or Minoxidil?

thanks for your comment! I have had her to the derms but am currently uninsured & job searching so we cant go back right now. plus her father&his wife make treating anything she comes down with difficult because they just have to disagree with everything that comes from me. he refuses to accept the alopecia diagnosis and would rather blame it on me.

Hey there. Well I did it!!!! I got the brows AND the eyeliner tattooed this past week. I LOVE it! Am so glad I went for it. I went to Susan Davis in Columbia and she was sooooo gentle and patient. I've got a regular tattoo, too and was expecting something like that, but it felt totally different. I think I'm actually going to have her do my upper eyeliner a little thicker. (She said I could come back in a couple of weeks and she would tweak anything I wanted tweaked for free). As far as pain with the eyeliner, it really wasn't pain. It felt more like a giant annoying mosquito buzzing around my eye that I just wanted to swat at, but couldn't!!! Take care!

HI Trina,

How is the Biotin working for your daughter? Hope things are going well..Happy Alopecia Day!
Cindy

; ) very true!

Hi Trina, Nice to hear from you..Sorry it has taken me so long to get back to you..I am in Florida right now and checking my email from my brothers computer finally!!! I am such an internet addicted..

I look forward to hearing how the book comes out..I have a children's book project I have been contemplating started, but it goes beyond talking about AA..That is for another time.

As far as the treatments go, Samantha has only had 2 months of consecutive weekly treatments. We are on a two break since I did not take the meds to Fl. The doctor says it is too early to know how Samantha's body will react to the treatment. She producing the correct responsse so I can only hope it is working for her inside, but we have not seen the outside.I have noticed a change in her skin when being in the sun these past few days..She always browns up with 50 on and she got a slight burn on her shoulders and I got nervous today because she is getting a rash on her body.. anyway, the doctor s aid that because we are doing one small area at a time it may take longer to see results. We are gradually increasing the size now. We have an apt in 3 weeks at the hospital. We may cut the dose to be more aggressive. Samantha is such a trooper and has never complained about the itchiness and etc. In her mind it is the meds fighting away the bad guys. I will certainly let you know when I see results....

In the mean time, I have an apt next Sat at the Kids hair Club for a free hair replacement. I want to get Sam a human hair wig that she can do anything in. A mom at the meet and greet highly recommended this place so we are trying it. I hope to get it before camp and that she will like keeping it on all week and taking it off for treatment on weekends..I hate seeing her this way....

Sorry for my novel...Stressful trip...Cindy

Hey! Just wanted to stop by and show your page some love. Havent been on much lately. How's the little one?
TTYL

Hi Trina,

Your sweet...And your daughter is lucky to have you to go through this with..It must be comforting to her to know that her mother understands what she is going through..I have been after Samantha to make a little video clip about her feelings towards AA to post. I think some of the kids her age would be able to appreciate her uplifting spirit..We have an apt Sat for her new wig and I am looking forward to get her some real hair and long too...She is looking forward to it to..I am just sitting and wondering if her hair will grow back with this meds we are trying. The studies are hopeful so I have to try to stop crying..I have cried a dozen rivers for both of us and Samantha has a drought if you know what I mean...What is the dietary of America you are using? I do have something i am considering if this does not work. I don't want to feed Sam's body with too many things at once and I need to stay focused for once on one treatment and give it the allowed time to see results..I just hate this 2 week break..When will it be Fri so I can forget about it...I must go unpack now..Cindy

That is no small victory! IT IS A VICTORY!!. I am soo happy to hear the great news. I can only imagine how you felt all through your bones! Have ice cream (haggen daz. lol) on me. lol

I didn't know us. I didn't know anything about alopecia until I was turned on to a half hour sitcom.

Yes, I can't imagine being a woman with alopecia. Females love their hair...lol! This group has opened my eyes to a lot of thought provoking situations and ideas. Thanks for the comment.

I know that I should take him to a derm. just to get checked out. But I'm hoping that since it has been so slow, that it will stabalize and go away on it's own. But I promise that if it gets any bigger, I will take him in. I rejoice w/ you in the small victory that your daughter's AA is reacting to treatments. God bless, Sarah :)

YIPPIE, YIPPE!!! Trina, thanks for posting yours news to me..I am so happy to hear the hair loss has stopped...Can you remind me what you have been giving Nijah? I rub the biotin shampoo and Sam's scalp and we are doing our thing. We went to the doctor today and she said we can increase the size or applications and to two a week. She said since we have been giving Sam such small doses it has likely not done much magic yet. Glad summer is coming so she can let her scalp breathe and we can really focus on the treatments. The doctor said it is okay to miss a week if we needed that it is good to give her a break...Keeping my fingers crossed..Keep me updated..Cindy

Thanks Trinia, you're so sweet!

Samantha is waiting fr her custom from the kids hair club. I have heard great things about their hair replacements. I am one of the lucky moms who has a child that loves her wigs and has had no issues. I just hate it because it is not her hair style or hair if you know what I mean. This new wig will be a replica of her old do which she is looking forward to having. And me too!

Have a good day..Keep me posted on the regrowth.
Tell me, what is this aloe vera juice?

Hi Trina, How is your daughter doing? Is she still on a stable halt of hair loss? I went to the health food store today and purchased Aloe Vera juice and biton tablets which are small, 500mg. We are going to start it today. I also bought her aloe vera lotion for her scalp when itchy from meds and a aloevea hair mask that I am just going to leave on her scalp while she plays in a bath. We started applying her meds twice a week now so we will see how she does. We are doing on larger area at a time now..I did have a dream that I woke up and Sam had half her brows and lashes coming in..The dream felt so real and I don't know what to make of it...Time to get Sam ready for school..Cindy

Trina, vent anytime....I have my moments of venting too..
Samantha could not swallow the biotin pill, but I did find 75 mg lidquid online..If you have a different source with a more appropriate dosage could you please forward it to me. How many times a day do you give hte juice. Sam loved it today. I mixed one tbs with oj and she guzzled it down..

I am glad to hear that your hair loss has improved and I hope for the best that the hair continues to grow and grow.. You sound like a wonderful person..Too bad we don't live in the same city!!!Cindy

Hey Trina,
Thanks for the blog comment. That's awesome news to hear some positive feedback for the lotion. I hope the lotion will work for me because I really really don't want to keep doing the injections forever. :(

Hi Trina,
Sometimes alopecia is harder on the parents than it is on the children, I think. How is she doing? I wrote a book that might help you -- it has a chapter regarding kids with alopecia and how to help. Check it out on my page...blessings, LeslieAnn

Good! Let me know if I can help!
Take care.
LeslieAnn

Thanks Trina, Sam is talking a multi vitamin with Biotin in it too that I got from the health food store..I will look into the buried treasure..cindy

Trina,do you think it is possible that Sam could get a rash from taking the Aloe vera juice in conjuction with her treatments since both go into the bloodstream? Samantha developed a rash post application, went away and came back. Her treatment is halted until the rash clears and then we are trying a lower dose. The dr is pretty sure her rash is from the squaric acid. She said the good news is that she has seen regrowth after such a rash that she has since her system has been upset. I did not tell the doctor I had started the juice and I don't recall when we started it. Any thoughts? I stopped the juice today.

Thank you Trina, you and your daughter are beautiful. You mentioned that you can relate to my story. How so? I am interested to know :)

I am so happy to hear that Niyah's AA has come to a halt. I wish her all the best that it stays away. Samantha's rash is just about gone. She finishes school on Friday so I plan to try to start up again this weekend and see what happens. Once I establish that she has no rash from the meds I am going to give her the juice again. She is disappointed I stopped the juice. Her body will have had a good break for almost 3 weeks. As always, thanks for the good advice! ttyl Cindy

you know trina, I don't know what to make of it ,but I am seeing lots of white hairs in clusters on Sam's head. I just realized that the biggest cluster is where her first patch was one year ago. There are also scattered white hairs and even a colored one...Do you think it could be the start? I want to give her the aloe again, but I am afraid to do so until we restart applications, hopefully in the next few days. Her rash is about gone..I am exited, but afraid I have my hopes up to high and will crash if that makes sense..Cindy

haha! Yeah I know what you mean, thank god we don't have to go through that! Do you have your eyebrows permanently tattooed? Or do you have to draw them everyday like me?

Oh you have no lashes? I've still got mine, I hope they will stay this time! It does get a bit tedious drawing them on everyday and having to check over and over to see if they get smudged! You look really nice though. I can't tell that you've got AU at all!