Hi Saida
Welcome to ALopecia World
I know what you mean about switching places with your daughter. I feel the same about my son Jon , 13. He has had Alopecia since he was 6.
How is your daughter coping? By the way she is beautiful!

Its good that she is coping well. I guess we learn to cope with it as well and just accept it as normal. Please let me know how the treatment goes. Good luck
Susan

Hi Saida, thank your for the friend request and welcome to AW!! Your daughter is adorable. How are you all doing? I wanted to let you know that your not alone. And your initial reaction was just like mine as well as many others. Have you contacted the Chidlren's Alopecia Project? They can help you connect with families in your area. They also had their first Alopeciapalooza, a conference geared for the kids. A second event is going to be announced soon. Cindy

Hello Saida, thanks for adding me as your friend as you know my daughter Yana had beautiful hair when she was born and it all started with a small patch and now she does not have any hair , eyebrow and eyelash left. We are still trying all kinds of treatments but nothing seams to work. Your daughter is beautiful with or without hair and we will pray for her recovery, May god bless us all.

Good luck with the treatment. What is his Dr. Gomen's treatment plan? I had contacted him, but b/c what we are doing is working he said not to change anything. Samantha is doing the squaric acid treatments. Cindy

Hello and welcome, Saida!
I understand how hard it is for you. Most parents have a really tough time when their kids get alopecia. Let me know if I can help.
LeslieAnn

Saida, once you get started with the treatment I would love to hear about all the things you are doing and how it is going. Please keep in touch and I wish you luck with it!
Cindy

Hi Saida, Your daughter is really cute. How is your daughter doing? We found Sierra's spots in August when I took her in for a hair cut. Fortunately, we knew right away what it was. We have many autoimmune diseases in our family so we knew right away what was going on. So far, she has done well with the cortizone type creams. Are you doing the same or are you trying shots? Someone suggested that we try Nioxin shampoo and conditioner. I don't think it has helped with the alopecia but Sierra had dandruff so bad before. I highly recommend it for the dandruff. I found some larger bottles on Amazon that I thought were more reasonably priced per oz. Its spendy but for a little girl but it goes a long way. Sierra is doing better now. When school first started we had some issues. Her long hair got cut shorter which helped cover up the spots better. She just at an age where the kids in school can be a little difficult. But so far she has faired well. We just try to find other things that keep her mind off of it and on to something else. She's enjoying music a lot. She plays the piano, violin and clarinet. I think that keeping her busy helps her and me ;)

Take care...
Stacie

Hi Saida, thanks for the email update. All I can say is that if this works it won't happen over night. It took Samantha about 5 months before we saw the start of regrowth with her treatment. If you really believe that this is going to work you need to give it 12-16 weeks. How does it work? Keep me posted!!! Cindy

Good luck!! Do mind me asking what it cost? What kind of additional consult do you get>

I know how you feel I was totally devistated when my daughter Haley lost her hair in huge patches and now she has only a little fuzz. I am a year away from those feelings now we are educating and raising awareness.I wish you and your beautiful daughter well.

How is the treatment going?

I know exactly what you are going through b/c I was there 3 yrs ago. I hope things look up soon for you all..The best thing you can do is crack that smile no matter how hard it is some days. I recall crying everytime I washed and combed Sam's hair and there would be times I did not want to touch her head in hopes that the hair would not fall out. Just stay positive and reinforce confidence to your daughter. If you are strong for her, she will be strong and allude self confidence amongst her peers. Have you looked into the treatment that Samantha is doing? This Alopecia is just so tricky and it's fate for treatment is still unknown. It would be nice to have answer sometime...Have a great Holiday!! Cindy

Hi Saida, Happy New Year! Thanks for dropping by..Sam is doing very well and is improving everyday. Your daughter is beautiful and you need to stay positive. How is the treatment working? You may want to look into the squaric acid. Sam was 6 when she started it and it is working for us. Keep in touch! Cindy

Hi Saida, you never can bug me..I think you are smart to take your daughter to another doctor. I took Samantha to 3 until we found a doctor that would be more aggressive to try something. I am sorry the doctor made you feel sad, but don't let him get to you. As far as the black spots you are referring to, Samantha did not have that. It could be hair growing in that has turned color or broken hair. I am really not sure. Keep an eye it. When hair grows it is white fuzz that turns color. Sam's hair did not grow in by her color. Did you ever contact Childrens Alopecia Project? It sounds like you can use some local support if they have another families in your area in their data base. I am also going to be helping Betsy with a giving CAP kids pen pals. If you would like to have a pen pal for your daughter get in touch with Betsy. We will be working on it this week, but she can have one at anytime. Her email is betsywoytovich@yahoo.com.
I want you to also know that you are not the first person to get sucked into buying something on the internet. I have done it along with many others. We will do anything for our kids. Keep trying because you never know. Have a good Sunday!

Hi Saida, how is DR Gonens treatment going?Is there any progress?

Hi Saida, did you find another derm yet?

I hope you find some answers for your daughter soon. She is beautiful no matter what. I am glad you signed up for CAP...Cindy

hello saida

did you decide to have second part of Hair Up? I started the treatment today . I hope it will work for all of us

Hi Saida...thank you for the friend request. If you have any questions on my daughter's treatment, please ask away! My daughter is doing the same treatment as Cindy's daughter and so far she is tolerating it well. We just started the treatment this month and our doctor is very knowledgeable on this treatment, as he teaches other doctors how to do this.

I wish you luck on your daughter's treatment. We tried Dr. Gonen's treatment but it did not help and now we are trying a different route. I am glad to hear your daughter is responding to his treatment!

Hi Saida,
Yes, Samantha is still using the squaric acid. She has been using it for 2 yrs now and has regrown her all, but in two spots so far. The doctor is not giving us a time line to stop and her eyebrows are growing now too. Samantha started this treatment just as her 6th birthday was approaching. Today is her b-day it all brings back tears to my eyes. It is definitely worth looking into if you have it in the back of your mind. Tell me what your thinking? Cindy

Good luck with it all..I am always here if you need anything..Have you joined CAP yet?

Hi Saida,

I have been following this Blog from the start.
The reason I asked the question "was there was a change in the product name" is because I dont recall this product being called Hair Up. I could be wrong about this but I am usually pretty "spot on" about things.

Jeffrey

Hi Saida, I can understand your point very well. Alopecia is terribly difficult to understand and to cope with at its beginning stages. First thing you should do is see a dermatologist and see what treatment he does prescribe for Ariana. Try the treatment but also seek a support group. The dermatologist is for her and the support group is for her but also for you to keep emotionally strong. Get back to me. Looking forward to hearing how both of you ladies are.

Hi Saida & Ariana, what town do you live in Nevada? Is it Reno? what is the town closest to you. Your daughter is a cutie pie. I had alopecia at 10 yrs. old. Let me know the town you're in and the one closest to you. I will try to find out what town has the support group. Thanks for your answer and have a nice weekend with your family.

You daughter's hair loss looks a lot like Mya's. We are so familiar with the stares, too. The good news is that everyone always comments on Mya's hats. She has some knitted berets that my friend made for her and they are so cute that strangers feel the need to tell her so. (They have no clue of what is going on underneath because she still has enough hair sticking out around her face.) Let me tell you that she LOVES these compliments! Every so often she will pick up the hat to show her head and tell them she has alopecia, but she is never embarassed around adults, but still shys away from showing other kids.

Just wanted to say as I stopped by your page that your daughter is very pretty with and without hair. I love hats and scarves too. I particularly love the pink scarf look in her profile pic - I have one just like it!

Vicky

x

Hey Ariana you are very beautifull..

Your Welcome. How are you doing ?

Hi Ariana,

I am sorry that Saida is not getting the results you anticipated with that treatment. Are you going to stop? How is she handling things? Have you thought about inquiring about the squaric acid? I think giving her lots of support and building her confidence will help her acceptance. Cindy

Thank you,yes they are cute & they love to get in to everything. but i am doing fine i guess i will say.

hello saida.. I am fine and still using Dr Gonens treatment...It has been 9 weeks.. My hair is NOT growing very fast but I see SOME progressing. I have white hair but some of them not growing:((...I think I have had 10-15% new hair with this treatment...I am sure I will keep using the treatment at least 6 -9 months...How are you and Ariana????

That is a great story and it sounds like the experience was positive. Please let me know how you make out with the new derm. I am only a click away if you need anything..Cindy

How is Ariana doing?

Hello, I just want to say your daughter is beautiful ..... I also have a beautiful daughter that is 9 years old with AA she has had it since 2007 and just like your daughter her hair has fallen out and grown back over & over again but Diamond has a great attitude and doestn't let her baldness get in her way although it took her up till this year to stop wearing a hat she is okay with it.... Maybe one of these days we can meet we to live in las Vegas so I would love to meet you and your daughter I also have two other children with AA / A universalis. I look forward to hearing from you
Liz

yeah I have also been looking for support groups here in Las Vegas but no luck.....but yeah getting together so our families can meet would be great.... we should figure out a date and place to meet......we are so excited to meet your family...

Red Ribbon

Hi Ariana, I just noticed Saida in her wig. It is beautiful. How is she doing?

glad things are going well for Saida. My only suggestion with keeping the wig on in the heat would be to wear a hat over it. Sam had the same issues when she wore a wig in the warmer weather. She'd come home and take it off like a hat...Good luck . Have you given any thought as to looking into the squaric acid treatment that Sam is doing?