Rhonda Kelley's Page

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Rhonda Kelley left a comment for Chrissi
"Hi Chrissi. My family has been through the same thing. Our granddaughter will be 11 next month and has had no hair on her head since she was 8. It has been very hard but it gets some better. We attended Alopeciapalooza (a summer camp) last year and…"
May 3
Rhonda Kelley commented on Miranda's group Parents of Children with Hairloss
"Hi Zelda,We went this past August and it was a great experience. The kids spent the days doing activities like canoeing, arts & crafts, archery etc. The parents went to break out sessions led by adults with alopecia, a doctor, other parents of…"
Jan 15
Rhonda Kelley commented on Christine Peck's group Atlantans with Alopecia
"you wont regret it Zelda. I just cant say enough about how special a time it was. Please let me know what the doctor says about the peach fuzz. Baylee has had it for a long time. Just wondering if we should go back to treating it. So glad to hear…"
Sep 11, 2011
Rhonda Kelley commented on Christine Peck's group Atlantans with Alopecia
"Sorry it has taken me so long but I wanted to let you all know how wonderful our experience was at Alopeciapalooza. Baylee had so much fun and it was so great to meet and connect with other parents of children with alopecia and other people with…"
Sep 10, 2011
Rhonda Kelley posted a status
"Alopeciapalooza was awesome! Cant wait for next year. A big thank you to all who made it so great."
Sep 10, 2011
Rhonda Kelley and Megan Willmott are now friends
Sep 10, 2011
Tina (Jillians mom) and Rhonda Kelley are now friends
Aug 13, 2011
Rhonda Kelley commented on Christine Peck's group Atlantans with Alopecia
"Baylee is doing good. Thanks for asking. Hope you are too. Neither of us look forward to going back to school. We have a couple more weeks before we go back:("
Jul 25, 2011
Rhonda Kelley commented on Rebecca Hibbs's video
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Becky Hibbs Music and Alopecia Awareness - 1

"Hi Becky and thank you for your uplifting message. My 10 yr granddaughter was about the same age as you were when diagnosed. Right now she wont let anyone but those closest to her see her without a wig. I cant wait to share this video with her and…"
Jul 8, 2011
Rhonda Kelley favorited Rebecca Hibbs's video
Jul 8, 2011
Rhonda Kelley favorited Children's Alopecia Project's discussion ALOPECIAPALOOZA IS COMING!!
Jul 7, 2011
Rhonda Kelley favorited Emily Naples's discussion 27 and covered up
Jul 4, 2011
Rhonda Kelley commented on Christine Peck's group Atlantans with Alopecia
"Its a camp for kids with alopecia and their families. This year its being held just outside Cincinatti. One thing it does is help kids develop their self confidence. Its free for the kids, but parents pay 225.00. This includes lodging, food, and…"
Jun 19, 2011
Rhonda Kelley commented on Christine Peck's group Atlantans with Alopecia
"Thanks Valerie and Regina. My head knows and understands but right now my heart hurts and I needed to get it out without her knowing. This is a great place to do that. We're going to Alopeciapalooza in August and I'm hoping that will help…"
Jun 16, 2011
Rhonda Kelley commented on Christine Peck's group Atlantans with Alopecia
"A familypicnic would be great. We are vacationing at a water park in Pigeon Forge and Baylee is trying so hard to keep a wig on in the water. Wish so badly she had other alopecians here to play with here. I'm struggling with taping and uptaping…"
Jun 16, 2011
Rhonda Kelley commented on Christine Peck's group Atlantans with Alopecia
"Yeah!!!"
Mar 27, 2011

Profile Information

Relationship Status:
Married
About Me:
My granddaughter has alopecia. I want to know more about this condition and meet others who are in the same situation. She is 8 yrs old. I am a teacher.
Do you have alopecia?
Parent or guardian of child with alopecia
Are you age 18 or older?
Yes - I am 18 or older

Comment Wall (15 comments)

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At 12:30pm on March 12, 2011, Cindy and Samantha said…
Hi, The rashes were a sun burn like red raised rash. It could be itchy and it lasted about a day or two and then it went away or faded. I would put the stuff on during times Sam would not be wearing her wig, usually after school and on the weekends. But, she did wear it at times, we just covered the treated area with a band-aid. About 6 months into treatment Sam developed a full body rash and we took some time off and a few weeks later was the beginning of her regrowth. I am not going to say it will work for you. The experience is different for everyone. Whether some don't get the rash or just don't like the discomfort that comes with it. Sam never complained about it and tolerated it at a young age. She will tell you that it was worth it. I would never do anything that she was not comfortable with such as the shots. She'd rather be bald then put needles in her head and I am fine with that. The treatment does not work over night. Everything I read said you needed to give it several months before you may see the regrowth. She has one area that is still growing in, the nape of the neck in one spot. I have seen a spot resurface twice. I treated it aggressively both times and the hair grew right back within 3 months. I have asked the doctor if I will ever have to stop. She tells me it is my choice and that her body's hormones are always changing so should continue to respond. Now, 3 yrs later I do it once a week and I if I see something I treat it more. There are times I do it biweekly. I don't follow a rigid schedule anymore. Twice a week we put steroid cream on her eyebrows and we don't treat the lashes. This new profile pic is her regrowth 2.5 yrs later. Her hair grew back curly when she had straight hair. LMK know if you have any other questions.
At 10:08am on March 11, 2011, Cindy and Samantha said…
Hi Rhonda, I am sorry it took so long to get back to you..I don't get on here as much these days. I will send you my private email. Sam has been excited to get the emails.

Sam did the SADBE aka squaric acid treatments as soon as all her hair feel out. That was 3 yrs ago. It is one of the irritant treatments that produces a reaction in the form of a rash. You need to get the rash or there is no chance that body is responding to the treatment. The idea is that we are tricking the immune system and it lets the hair follicles grow. I know of some others who have tried it because of Sam and it has worked, but it does not work for everyone. Samantha's eyelashes have yet to return, but you never know. She gets a few here and there, but they don't stay long. She has most of her brows. You can google SADBE to read more or I am happy to give you more of our experience when I have some time to write it all down. I know if you read through some older posts on the subject I have posted my thoughts. take care, Cindy
At 6:56pm on March 3, 2011, Cindy and Samantha said…
Hi Rhonda,

It is nice to hear from you. I am glad the hair club has worked out for your grand daughter. Sam has regrown all of her hair except eyelashes. She has been doing the squaric acid treatments.

As far as the web you would need to either log out to rejoin to create the page or maybe set it up from another computer you don't log into FB with to set it up. Just follow the steps when you do the join now. You may need to use a different email address as I did. You can simply create a free gmail or hotmail account to use. Samantha has her own gmail account, and she likes it. It lets her do different things, age appropriate in the body of the email. Hope this helps..Cindy
At 1:09am on March 3, 2011, Angie said…
oops. Thanks for the gift Rhonda Kelley
At 1:27am on March 1, 2011, Lindsay said…
Hi! I feel for your granddaughter. I still have some hair left so mine is a custom made European human hair clip on one. It was actually made for someone else who ended up not buying it, so i got it discounted, but it was still quite pricey. The hair is hand sewn in to make it flow more naturally. I am an extremely active cow girl. I spend my life on the back of my horse any chance I get, but I actually don't wear my wig riding. My horses don't mind me being bald. =)
I am trying to make this one last as long as possible.
At 8:46pm on February 4, 2011, meliana said…
Thnx so very much!! God has wonderful plans for us!
At 10:11pm on February 01, 2011, Angie gave Rhonda Kelley a gift
Gift
For your grand daughter.
At 7:50am on November 13, 2009, Cindy and Samantha said…
Hi Rhonda, Samantha would love to write to your grand daughter. Sam also has her own page if you search Samantha, but an email to my inbox works fine too.Sam will respond. Good luck wit the hair club. Cindy
At 7:37pm on October 19, 2009, Cindy and Samantha said…
Hi Rhonda, I just read about your wig purchase on another thread. I wanted to suggest that you contact the Hair club for kids. www.hairclub.com. They offer 3 free hair replacements a year and 8 free services. Sam wore 3 of them over the course of a year. They can be taped on. A lot of kids on here wear them and love them. YOu need to get the application and have a doctor sign it b/c of the medical grade tape used. Then they will measure her head and match a color to the hair she has or from a picture. Sam wore her wig with her regrowth and we had no problems. Please let me know if I can be of any help. Cindy
At 8:11am on October 16, 2009, Cindy and Samantha said…
Hi Rhonda, Sam likes having her own page I moderate it all. It gives her some independence and she can only go on if her log her in. There are lots of girls her age on AW..Sam has always been very accepting of her hair loss. She has now been wig free for 4 months. Most of her hair is back and her brows are slowly returning. I have no experience with wigs for kids. What is there program like? Samantha will enjoy writing to your grand-daughter.
 
 
 
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