Comment

Comment by Monique (Mom) on January 26, 2011 at 7:34pm

Just go to the website and click on the contact us. You will get Betsy. Tell her I sent you and you want to sign up and get involved. Tell her your story and she will direct you in the right direction. She is amazing! She will send you information on the summer camp, Alopeciapalooza.

Comment by Elizabeth Brokaw on January 26, 2011 at 3:32pm

ok i will! do i just go to the web site? I live in michigan so we shouldnt have a problem going to Ohio im sure she would love it!!

Comment by Monique (Mom) on January 26, 2011 at 1:44pm

Please sign up. We go every year and love it! It is very important that we go. Contact CAP and tell them I sent you. Monique Gertner. Betsy knows me. Tell her you need to get involved and want information on Alopeciapalooza this summer in Ohio. Your daughter will meet so many other girls and will have a blast.

Comment by Elizabeth Brokaw on January 26, 2011 at 1:38pm

I do have one of the picture books. i beleive i signed up last summer for CAP i cant recall. I would like to get more involved and i would love for my daughter to go to that camp they have every year. i think it would be good for her to meet other kids that have it. She always tells me shes ugly and bald and i always tell her she is beautiful and she refuses to wear her wig so i let her do what she wants when it comes to that aspect. she doesnt want to shave her hear she has some hair left. she is the girl in the blue in my profile pic. she is about to start therapy. i even offered to shave my head so she wouldnt feel alone!! she told me to keep my hair lol!

Comment by Monique (Mom) on January 26, 2011 at 1:28pm

Are you a member of the children's alopecia project? CAP. They will send books to your daughters school that explains everything. If you are in the states and on the east coast, they even come to schools to give presentations. They are amazing. Look them up online. The children's alopecia project.
We have all the books. I am waiting for Gabby to get to school age to bring them to school. I am an elementary school teacher, so she will be at the school where I teach. I'm hoping this will help.

Comment by Elizabeth Brokaw on January 26, 2011 at 12:43pm

thanks Lisa !! :~)

Comment by Elizabeth Brokaw on January 26, 2011 at 12:40pm

Hi monique maybe i will take your Dr's advice and just leave it alone since there really isnt a cure for alopecia that i know of that works 100%. There is a childrens book that is out there about Alopecia that I had the teacher read to the kids on the first day of school that expained to them what it is on "kid" terms and my duaghter hasnt had any problems with her class mates since they know about the condition now.

Comment by Lisa F and Chloe on January 26, 2011 at 12:39pm

It is hard to know what to do. Every medical option I have ever researched leaves you wondering if it is really worth it. Even though we saw hair growth when using the squaric acid, I'm not 100% positive it wasn't just the growth/loss cycle of Alopecia. You're a good mom to try and found out about the side effects. I wish I could help you more.

Comment by Elizabeth Brokaw on January 26, 2011 at 12:19pm

I think the doctors said that the next option would be a low dosage of steroids orally instead of shots.

Comment by Monique (Mom) on January 26, 2011 at 12:15pm

Hi everyone. It has been awhile since I last posted. My baby Gabby is now 2 1/2 years old. She was diagnosed at 10months. She has never regrown. Although her eyebrows did come back in with some eyelashes. She does get that peach fuz in the summer due to the sunlight. We go to Johns Hopkins where we see the director of pediatric dermatology. He is amazing! He suggests nothing. He did say to try some rogain on her head. I didn't. It isn't worth it. She is fine at this time. I am worried about preschool next year though. I will educate the parents as much as possible before she gets there and hope they educate their children on what not to say. I find her knowing nothing at this time is exhausting. I try so hard to protect her. I don't want a comment to give her the realization before she makes it by herself. I tell her everyday, four times a day, she is pretty and beautiful! I make her say it! I am always worried about comments that she will hear and take in. I am praying everyday that in her future, there is a treatment that works.
I don't believe in any treatments for kids. As my doctor says, "the treatment shouldn't be worse than the condition".
I wish you all peace and acceptance.

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