So happy you found this site...How are you?

HI, I just wanted to say hello to you!! We hope you had a great Easter!!!

Hi Tray, Have you looked into going to the conference. They usually have about 100-150 kids. If it is doable, it is a great place for your daughter to interact with other kids who have alopecia as well as start to develop her own personal alopecia style.

Please feel free to ask me about anything and if your daughter joins the site, I will add her as a friend immediately! Take care and keep in touch. Cheryl

The conference is in Louisville, Kentucky and you can get more information from www.naaf.org.

Hey there! Their chatting in the chat room...

The articles on Kelci, your daughter may enjoy reading about her.

Kelci

hello Tray,

i am a parent that has a child that is dealing with as well. I have had AA and AU since I was her age. Trust that she will be much stronger for it. Most people dont know that I have it, but I try to tell as many people as I can. I discoevered a way to do it myself without the wig process. The wigs were heavy and uncomfortable. I am using a supplement called biotin on my daughter it is all natural and she is reacting to treatments. My daughter is eight almost nine and if she needs someone to talk to my daughter would be happy to. I think it would be great for them to be able to discuss the things they are going through with one another. My daughter is teaching me to be strong. I thought the lessons would come from me. Are you going to the conference?

Hi Tray,
Sorry to hear about you not feeling well. It is a beautiful day today in Gettysburg. It is about 64 degrees here, it is so lovely.

Sure, I don't know that there is a test that determines that it is Alopecia. I don't know how they would figure that out since it is the white blood cells attacking the hair follicles. I wonder if there is one? That would be new to me! HA HA

Anyways, when we first found out about the spots they did a number of blood tests to see if it was a nutrient deficiency, or a thyroid issue, and what not. Once those tests came back negative they explained Alopecia and said there was no cure etc. So we have tried many topical creams, and the last two we used thinned her scalp really bad and she developed spots. So her dermatologist did a skin biopsy in the office with just the topical numbing agent, lidocaine. It was seriously the scariest wait for us. I think I would completely blame myself because my once healthy girl would of had cancer instead of no hair. Plus, the ointments didn't even work!

Needless to say, we are at a stand still for any kind of treatment. We are using a product that is native here in New Mexico called, Yerba de la Negrita. This is a concentrate spray, shampoo, and conditioner that is made from a black herb that is supposed to promote hair growth and thicken the hairs, and make it stronger. I think so far what is left of her hair has been thickened and a lot stronger. I haven't seen any regrowth spots yet, and she has gotten even more spots, but i think if it makes the hairs she already has stronger, that it is worth it. My mother-in-law started using it when she did and her hair is 100% thicker and a lot softer looking. One of the Nurses I work with that is also a cosmetologist recommended it.

http://www.taosherb.com/store/negrita.html?gclid=CNCJn_ijsJICFQgogwod0RTBQw

Hey there my beautiful babies (Tray N Bean). This is Nana. I hope the two of you know that I love you all so much and when you hurt I hurt. Bean I saw your daddy yesterday and I hope he will be home soon. Always know that Nana loves you and I'm here for you always. If you want me TT and Pa-pa will shave our heads for you...just say the word and it's gone! Blessing and love
Nana

Hi Tray and Jaz!!
I love you both so much...

Hi Tray,

Yes Biotin can be ordered on line. I ordered the shampoo from Vitocost.com and it is real inexspensive. Niyah goes to a dermatologist who has aa himself. The doctor told me today that she can no longer wear braids as it puts more pressure on the hair and it is already attacking itself. He recommended going natural. I am going to give her twist which will not put any strain on her hair. The medicine she uses is called cast and they put her on elidel from prioptic which the dr said will cause less irritation and keep her from scratching so much. She uses both and rotates them which works versus just using one. Tell Jasmine to stay strong it will all work out. Maybe you should try another dermatologist who has experiene with the condition

I'm sorry the first medicine is called cordran and elidel cream.

yes,

He told me to use Elidel along with the Cordran. she was on prioptic but it irritated her scalp and she scratched a lot. he said the elidel has the same medicine as prioptic. That is weird they say 4 months. She goes every 4 to 6 weeks. Well most of the time they use some steroid cream that is used for psorsis and eczema too. My mom is a pharmacist so I have her check the ingredients. The specialist in the Dc area seem to do better. I think the hospitals have more funding for research.

I hope the biotin does work for you. I pray for all of us to be strong we need it.

Stay strong and believe that she will be much stronger in the long run for this... Have you thought about a vacuum wig since she wears the hoodie all day

Tray,

i did some research on elidel and it is used to supprese the immune system. So that is why they are giving it to her. if you supprese the immune system then you allow it to stop attacking itself is the hope. The protopic has been working so hopefully the elidel continues the job that the protopic and cordran have been doing to make it grow but it is a slow process, but I noticed the foliciles have opened back up and that is a good sign

Hi tray,

yes,

I brought the shampoo from the merry clinic. I did not think about the capsules. I also brought the Deity of America grease and shampoo and conditioner. So do you plan on buying the stuff from merry clinic?

Yes, the players name is Charlie Villanueva and he also has Alopecia as well. He was really nice. The meet n greet was only a couple of minutes though, but it was really a confidence booster to her and she was so excited. My local chapter sent the information to me through NAAF. Maybe if you call someone at NAAF they can help you

Tray,

Thanks for the information. I am going to look into it. Hey I might need it too. I am always sluggish and it is because I have anemia and asthma. Thanks for giving me the information. Jazz added me to her page. I wish it was a way for them to talk. Just know that even if the medicine works it may be a slow process. I pray for all of the kids who are going through this. Maybe when we go to Disney World we can meet up. I know that we are going to go to the conference next year.

Hey there my beautiful babies! I was in Miami for the funeral (glad that's over) and we got back only to realize T-T walked off and left a bag of new shoes ($67.00!) in the Liberty Mart! At any rate I am so happy to hear about the Bean's new talent. Her daddy was good like that until he got hit with a ball and never went back. I really felt he would have gone to the pro's. Well keep me posted and give the Bean my love. Don't forget...I'll do whatever it takes to make her comfortable (you know I got a ton of wigs :)! )

Girl yes my stomach was toe up but when I thought about who left them it was like oh well. I'm calling today as they were closed on Sunday & yesterday. Gma Sarah says the only thing people will turn in is a body and they may not turn that in! I will tell Roy to make her some and send them home. He does them for the cancer babies at the hospital where he is now.

Tell Jazz,

That it will be hard and that your true friends will love you no matter what. People that tease and make fun of other people are really mad because they have something wrong and they don't want anyone to notice so they tease you. Just know that in the end you will be a much better person then they are.

tray,

I was looking at her pics and she has the nape of the neck and all the edges for the most part which is good.. Those are some of the harder areas to get to grow. I think she just needs a dr to take his time and work with you. Did you get the medicine you were telling me about?

I have heard of minoxodil it is basically Rogaine. I went and got some information for you and put it below for you to read about monoxodil. Alopin never heard of it. You dont necessarily need a children's dermatologist just someone who is not experimenting with her. Read below for the information and you should be seeing the dr at least every month to month and a half.


Minoxidil was the first drug approved by the FDA for the treatment of androgenetic alopecia (hair loss). Before that, minoxidil had been used as vasodilator drug prescribed as oral tablet to treat high blood pressure, with side effects that included hair growth and reversal of male baldness. In the 1980s, UpJohn Corporation came out with a topical solution of 2% minoxidil, called Rogaine, for the specific treatment of androgenetic alopecia. Since the 1990s, numerous generic forms of minoxidil have become available to treat hair loss while the oral form is still used to treat high blood pressure.

The popularity hair loss treatment is due to the general preference in the overall population for the cosmetic appearance of a full head of hair. Minoxidil is used to stimulate hair growth in areas of the scalp that have stopped growing hair. As of early 2001, the exact mechanism of action of minoxidil is not known.

I hope you went to www.childrensalopeciaproject.org and registered. You and your daughter are beautiful. Keep positive and remember that self-esteem is the key to doing well, no matter what age you are. Please take care and speak with you later.

Jeff Woytovich

thanks for the comment! A chat with the girls is a wonderful idea!Peyhton would love to have someone to talk to, I believe she feels very alone in this! She is home every other weekend (including this one) & that would be the best time for us. Let us know what would work best for you so we can set one up!
btw: u have great taste - you have the same sofa as I do!

You are welcome, Happy Children with Alopecia Day!

All kids with alopecia, stand proud and know that you are no different than any other kid!

Jeff

At 12:15pm on April 14th, 2008,
Cateria said…

I think it's a great that your spreading the word about Alopecia because knowledge is power. I know that the last couples of months have taken a toll but be encouraged their is sunshine after the rain. GOD didn't bring you this far to leave you. I know from experience that it's hard when your baby is hurting and you wish you could make it go away. I know kids can be cruel but keep your head up. GOD created us all different and we are all wonderful masterpiece. Outer beauty fades with time and inter beauty last forever. Jazz your are a beautiful girl and your hair doesn't define who you are. I know kids can be mean but you don't have a problem. They have the problem. Jazz hold your head up and keep smiling because you are and always will be Beautiful!Be encourage and GOD BLESS!!! Delete Comment

Hey Tray,

Hope all is well with you and Jazz.

Tray and Jazz. I first had alopecia when I was 13, so I know how you feel. where in Florida are you? I live in Tampa.

Hey Tray,

The little one is great! She is staying strong. Tell Jazz I said HI.

TTYL

Hey tray,

We had a small victory. The doctor said that her inflamation has gone down and that her hair has stop shedding he believes and now we just got to wait for it to grow back. i have been using the deity of america and so that has been thickining her hair up. I have not smiled this much in months... Just had to get that off my chest.

Thank you so much! you and Stephanie have really been an inspiration on those days when I just really did not know what to do...

Hey Tray,

Hey girl...are you geting my emails and the photos and deadline regarding the book? Let me know.

Tell Jazz that I said hello!

Love the photos. I pray that she is starting to look past the hair and seeing just how beautiful she is...

I had no idea that so many people was dealing with this problem. I am here for you and I always will be. I love this and I am going to inquire about more ways to get involved just to encourage others. Love you

Hey,

Just wanted to stop by and say hello and see how you are doing ?

Hi, Jazz is a cutie pie, encourage her to live life to its' fullest and laugh often. She will be fine and so will you, if you ever need to talk, send me a comment. I've had AA since I was 9 and I have had my ups and downs, mostly ups, stay blessed.
Linda

Girl there is nothing in this world I will not do for you. I have started to search this more and if I can not do anything else I can be here for encourgement and support. You are a great mother and this a is a testimony for you and jazz. Keep the faith stay strong and I remember I am always here for you and Jazz. I love you toooo!

she is beautiful, just keep reminding her of that everyday (i know u r.)

Hey Tray,

Well I am so glad that Jazz and you are ok. I have thought about you guys too. Well we know that it can be trying so just keep your faith I know it will get better. Tell Jazz to stay strong. You too.... i just got back from New Orleans so I am a little tired and just got back into cyberspace myself... Niyah is doing fine and she is still in a remission phase and so I hope that stays that way.

TTYL

Trina

Hi, Tray. I haven't been by your page in a while and just wanted to see how Jazz and you are doing. I certainly hope that you're treating life well and reaping every wonderful benefit of doing so. Love the photos, by the way. - rj, Co-founder, Alopecia World

Hi Tray & Jazz how are you both? I have a daughter who has had alopecia since she was 8 she is now 11 nearly 12. I totally understand what you are going thru..........I won't deny the last three years have been such an emotional ride one that has been really frustrating and scary..........BUT............it has got easier. Nicole now is heading towards being AU and coping fine, there are still moments when I think this just suxs but they are getting further and further apart...........It is so nice to meet other parents and children who have and are dealing with Alopecia. I would luv to keep in touch and get to know you better.

Anyway take care, talk soon
Luv Sharon

Hey Tray,

I hope you are enjoying the summer.... i miss talking to you...

TTYL

Hey tray,

All has been good. I am getting married so needless to say the planning that with the coordinator has been crazy. Tell jazz that she will be great! Kids can be so insensitive sometimes. I hope all is well with you.

She is good. She has had a full recovery. The hair growing back still took a while and so she did not really seemed phased by it. She wants to grow up and help kids with Alopecia. She is my soldier. Thanks for the well wishes... How have you been?

Hi Tray thanks for your message it was nice to hear from you. Things are really good here, super busy but good. We have just got back from a school camp (I am a teacher) which I took both Nicole and Scott too.......and I have to say Nicole was wonderful with the little ones it was great to have both kids there. We are fast approaching our end of year so things will be crazy from now on. Nicole is doing really well, she has a new vacum wig which seems to be working really well.

How are things going with you guys? How is Jazz doing? Did you have a nice summer? Take care and look forward to hearing from you soon. Sharon

Hi Tray and Jazz! Hope you have a wonderful week!

Just came by to wish both of you a happy New Year! :-)

Love the profile and the song. "I Need You Now" My son Ray has alopecia and I've always told him God has a reason for it. I've tried all kinds of creams for his head and I finally realized for myself God has a reason and a plan. Nothing out there worked, but I do believe in a higher power that can heal. Thank God I found your profile, what a blessing I received today. Thank you.

Hey Lady,

I see Jazz is looking sooo much older LOL.. She is such a cutie. Hope to hear from ya soon....

Hey Tray,

Yes. I am getting married in six months and due in five months lol . I just found out that it is a boy. My fiance is really excited. The morning sickness has finally gone away. Yes, you have been gone for a long time..

Well JAzz is the average 12 year old. Niyah turns 10 next week and I can't keep her from wanting to do everything. 9 months I trade with you anyday. I am soo not ready for diapers again. It's been 10 years.

The injections do hurt but they take time to work also. I did them for about 2 years and they worked for me. Niyah still has a small spot and I am working to get it better. It has taken some time for it to grow but I am thankful that it got better. Just keep up hope and faith that things will get better. I will keep her in my prayers and hopes that everything works out for her. Just continue to be strong and know that you have someone who understands what you are going through.

XOXO,

Trina