Hopefully you can get the time off and join us, even if you come at 2pm...I maybe moving our meetings to Sun pm's, b/c I have a schedule conflict with Saturday's. But, nothing is definite yet. I did not know you can use latisse for the brows, interesting. We are just continuing with our thing and progress in due time..Sam seems to be getting brows now, but we will see if they stay. in past she gets afew hair that don't say, but this time she has alot more..Cross your fingers!
Hi Ala,
Your daughter is too cute! She's beautiful. Yes, the sulfasalazine seems to be a safe treatment, and we're hoping that Haylei's hair continues to return. She is monitored closely by her doctor, and he is in full agreement with her treatment, as sulfasalazine is one of the oldest medications. If your daughter can tolerate sulfa based medicine and your willing to see it thru I think it is definitely an option that should be explored. The mother that recommended to us told us to not expect to see anything for at least 6 months, but within a year it should all return (as her daughters did, and she still has all of her hair). We actually are seeing hair starting to return and it hasn't been a full 4 months yet. So we, like you, are both hopeful and prayerful. Let me know if you have any questions, we're here.
Hi Ala, how is your summer going? I hope you get my email about our CAP lunch next month. We would love to meet you. How is your daughter doing? We have a few little girls her age. Cindy
Hi Ala, I hope you can make it..Just email if you know ahead of time so I can plan accordingly..But feel free to come on the spare of the moment toWe will resume meeting in Sept in Hopkinton. Cindy
Hi Ala,
How are you? Your daughter is adorable. My name is Dotty and I'm from NH. I wanted welcome you and to let you know that we are planning an "Alopecia beauty day" at a boutique in Chelmsford, MA, on June 7th as our first official awareness event for our newly incorporated non-profit Alopecia company. They are opening the boutique just for us and we can try on clothes, take lots of pics, and just have fun together. I got at least 40 dress up costumes for the kids. They will look so adorable. We are going to do a buffet brunch at the hotel nearby first and then go to the boutique. I hope you can make it. I know it will be great!!! Please let me know so we can do a head count for the restaurant reservations.
Love and Hugs,
Dotty
hey, your daughter is just beautiful :0) it is a hard thing to deal with and some days you feel differently about it. for a few months i would cry at night but now 2 years into it i really do admire kaiana for how she has dealt with everything. she has amazing support from her friends and her family. if you have any questions on how we dealt with things, feel free to ask (privately) what we did was take the suggestions and used what we felt would suit us. we did the "natural healing" thing with a vibrational therapist.....which ofcourse didn't work :( but you have to try these things for yourself...
take care
cheryl
Thanks for asking to be my friend - my first one! You daughter is adorable. I do think that this disease affects us parents more than the children. I am always amazed at their resilience. Nice to meet you (electronically).
Love the pictures you posted. I wanted to see if you would want to send me your email address so I can add you to my CAP list for meetings..May 9th 1-3 in Hopkinton is our next meeting. I hope you can make it and I can send you the directions.
Hi ALa,
Sorry it took me so long to answer you, we were away on vacation to Peru!! It was great. I'll post a photo soon. Hope you have a great day!! Love your photos too! Debbi
I see you are in Chestnut Hill..I usesd live near that area..Your not too far from Hopkinton..Let me know if you want to come to the meeting and i will send you the info...My husband has an office so I am near your area periodically.
Ala, where in Ma are you? I am starting a CAP support group in MA. Our first meeting is next Saturday March 21 1-3pm in Hopkinton. A majority of the parents coming have daughters that are 5. If you would like the directions and all the info please email me at kweensgurl@aol.com...We have about 5 families coming so far and there is another little girl coming who just turned 5.
Your post sounds alot like what I went through. When Sam was almost 5 my husband noticed her brow was disappearing and I made nothing of it until several months later I found her first spot. 6 months later i was looking for a wig. Samantha wears a wig from the hair club for men. They have a kids program that gives her 3 free wigs a year. She also wears headbands with hair sewn into them that she loves. She is currently being treated at Children's and is having regrowth. The bald looking pictures on my page is actually different stages of regrowth. Please feel free to email...This site is great and I wish it was here 2 yrs ago when I was losing my mind..
Hi there, your daughter is beautiful..My name is Cindy and my daughter is 7. She too developed Alopecia at age 5. We have always been upfront with her about it and she deals with it all exceptionally well. How is your daughter coping and how are you doing? Cindy
Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.
Ala's Comments
Comment Wall (20 comments)
You need to be a member of Alopecia World to add comments!
Join Alopecia World
Hopefully you can get the time off and join us, even if you come at 2pm...I maybe moving our meetings to Sun pm's, b/c I have a schedule conflict with Saturday's. But, nothing is definite yet. I did not know you can use latisse for the brows, interesting. We are just continuing with our thing and progress in due time..Sam seems to be getting brows now, but we will see if they stay. in past she gets afew hair that don't say, but this time she has alot more..Cross your fingers!
Your daughter is too cute! She's beautiful. Yes, the sulfasalazine seems to be a safe treatment, and we're hoping that Haylei's hair continues to return. She is monitored closely by her doctor, and he is in full agreement with her treatment, as sulfasalazine is one of the oldest medications. If your daughter can tolerate sulfa based medicine and your willing to see it thru I think it is definitely an option that should be explored. The mother that recommended to us told us to not expect to see anything for at least 6 months, but within a year it should all return (as her daughters did, and she still has all of her hair). We actually are seeing hair starting to return and it hasn't been a full 4 months yet. So we, like you, are both hopeful and prayerful. Let me know if you have any questions, we're here.
How are you? Your daughter is adorable. My name is Dotty and I'm from NH. I wanted welcome you and to let you know that we are planning an "Alopecia beauty day" at a boutique in Chelmsford, MA, on June 7th as our first official awareness event for our newly incorporated non-profit Alopecia company. They are opening the boutique just for us and we can try on clothes, take lots of pics, and just have fun together. I got at least 40 dress up costumes for the kids. They will look so adorable. We are going to do a buffet brunch at the hotel nearby first and then go to the boutique. I hope you can make it. I know it will be great!!! Please let me know so we can do a head count for the restaurant reservations.
Love and Hugs,
Dotty
take care
cheryl
Sorry it took me so long to answer you, we were away on vacation to Peru!! It was great. I'll post a photo soon. Hope you have a great day!! Love your photos too! Debbi
Your post sounds alot like what I went through. When Sam was almost 5 my husband noticed her brow was disappearing and I made nothing of it until several months later I found her first spot. 6 months later i was looking for a wig. Samantha wears a wig from the hair club for men. They have a kids program that gives her 3 free wigs a year. She also wears headbands with hair sewn into them that she loves. She is currently being treated at Children's and is having regrowth. The bald looking pictures on my page is actually different stages of regrowth. Please feel free to email...This site is great and I wish it was here 2 yrs ago when I was losing my mind..
Cindy
T
LeslieAnn
Welcome to
Alopecia World
Sign Up
or Sign In
Disclaimer
Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.