Miranda's Comments

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At 11:24am on September 19, 2011, Sarah Eisenhardt said…
At 4:14pm on May 30, 2010, Yakynchenkova Natascha and Igor gave Miranda a gift
At 1:23am on August 20, 2009, Tracy and Amanda said…
Hi Miranda,
How are you?
Tracy and Amanda
At 2:29pm on June 2, 2009, childrenwithhairloss said…
Check out www.childrenwithhairloss.us
At 6:19pm on June 1, 2009, Lisa Leppert said…
Hello Miranda, My name is Lisa. I also have twins (31/2). Only one with Alopeica. She has totalis and has since Christmas 2007. I have been worried when they start school. They go to a preschool program 3 days a week for a few hours and the kids there are great. How did the kids react in Kindergarten.?
At 2:42pm on November 28, 2008, Alexandra Rinderer said…
Hi Miranda,
What a beautiful family you have! So blessed.
I'm originally from ABQ (red or green? hehe) and just wanted to say hello and I hope all is well with Della and your entire family. I hope you all had a wonderful Thanksgiving in Albuturkey.
Alex
At 2:07pm on September 29, 2008, Cindy said…
Hi Miranda, I was thinking of Della today and wondering if things were getting better for her at school. I am here if you need anything..Cindy
At 11:12am on September 19, 2008, Jana Wells said…
Hi Miranda,
I think I left a comment for you on someone else's page accidentally. I am looking forward to getting to know you!! Thank you for your response.
At 3:01pm on September 18, 2008, Cindy said…
How are things going for Della Miranda?
At 2:47pm on September 18, 2008, aileen arlantico said…
hi miranda thank you for the welcome.
At 6:42pm on August 30, 2008, Megan said…
hi Miranda,
my 5yr old daughter is also experiencing major hairloss for the 2nd time since last nov. she is totally fine with what is going on. i am a wreck but def getting better since joining this amazing support group. i'm really looking at this whole thing in a different way now. which i guess will be good for my daughter in the long run. how does your daughter do with the wig? it looks nice. my plan is to have my girl wear caps for now. i just don't think she'll keep a wig on her head right now. she's always taking the hat off as it is. thanks and talk to you soon.
At 7:59am on August 21, 2008, Cindy said…
Miranda, I loved reading your post about Della's experience in K thus far. I think it was a great confidence booster for the teacher to have done what she did. And when she is feeling sad you will have an awesome book to show Della to remind her how beautiful she is. As long as the kids continue to be educated Della should have no issues with peers in school. They will just come to know her as their friend Della, not really caring about her hair. Her teacher sounds like a great fit for Della's needs. I wish her lots of luck in school. I do think most classrooms have a helper for the day at school if I recall last year. But, who cares if she made it up to help Della feel good about herself. Please keep me posted..Cindy
At 1:53pm on August 16, 2008, Cindy said…
Oh Miranda, I can hear in your message that you are feeling down and I am sorry to hear that. I know how excited you were to try the treatment. You know Samantha had a few set backs over the last 6 months, but the doctors really worked through it to make it work for her. Samantha is resilient and has tolerated a lot and has never complained. I wish there was a doctor local that you could have worked with on this treatment. Or can you revisit the treatment without applying the stuff the way you did. Honestly, when you told me you put it on her whole head at once I was stunned. Especially, not knowing how her body would respond. We had to work up to a 1/4 of her head and the doctor wont go larger. Can you consult another doctor on this treatment or does Della just not want any part of it. We are very excited to see the hair filling in.

I can understand that you don't want to pursue a wig right now. I do want to let you know that the hair club will make an exception if you plead a good case. I know a mom on the board here did and her daughter got a wig. This wig is nothing like others I have looked at and Samantha loves it and she looks like she did before her loss. We trimmed again yesterday and it looks even better. Would Della at all be into wearing the headbands with the hair. Samantha has lived in them all summer and loves them. Just some ideas to make her feel comfortable about her hair loss.

Now as far as school. I am not the best person to give you advice since I have never told the parents in her class. I still feel that it is not the business of others to give details about my child's medical situation. In our case, sam wears a wig so it is not visible. But, if Della is not going to cover her head and you are concerned about being teased then I would contact NAAF or CAPS about educational material so you can properly educate her class and maybe the entire grade since Della will eventually be with a new group of kids year to year. From Samantha's experience last year, the kids recognized she was loosing her hair because they saw the brows and lashes go. Sam would say, X said I have no X , but that is okay you are still my friend. My point is that at this age kids are too busy playing and having fun to notice appearance. My suggestion for the future would be to keep an eye on who she develops good friendships with over the year and request that those kids be in her class so when she moves up she will be surround with peers who she likes and has a good friendship with. And, if you feel and when you feel comfortable talk to those parents about Della's Alopecia. I know that Samantha tell people she has a wig and Aleopica at times. Honestly, I think the kids know she has a wig, but I don't know what they know or what their parents know and I have never been questioned. I just want our privacy respected. Please keep me posted and I am hear from you..I am sorry if I was not much help..Cindy
At 6:34pm on August 14, 2008, Cindy said…
Hey there, popping by to say hi..Did the girls start school yet? Please let me know how things are going. Sam's hair is growing and as you can see she has her new wig and loves it. It is my girls old hair back again...Cindy
At 10:17pm on August 2, 2008, Cheryl, Co-founder said…
I read about your song on another profile!

Grow Hair, Grow!
I know you can!
But if you can't it's okay,
I'm beautiful anyway!


I love it! Hopeful, positive as well as preparing your daughter for either outcome.
At 9:01pm on July 23, 2008, Cindy said…
Miranda, I was so sorry to hear about Della's experience with the treatment. Our doctors have been cautious. But, I am glad to hear she is having regrowth. I hope the reduced stress level is the trigger for her regrowth.

We went to the doctor today and they were happy to see the regrowth Sam is having. They told me can bump up to 2 times a week again. But, we still are using the .001 dose which is half...I am so hoping she can go wigless by the end of the year...
Hope you are enjoying your summer..Cindy
At 10:00pm on June 27, 2008, Cindy said…
Girl, how Della doing with the treatment? We are starting to see regrowth 4 months later...TTYL.....
At 8:36pm on June 20, 2008, Cindy said…
Miranda, how is Della handling the treatment thus far..After set backs and 17 applications spread out over the last 6 months it appears Sam is getting hair with color. It is just starting to flourish and can be hard to see , but at times you can see it in the right light. She is getting patches of white hairs in different areas of her head and some are beginning to change color.. Time will tell if this is real....Cindy
At 6:52am on June 18, 2008, Cindy said…
How is Della doing?
At 6:01pm on June 13, 2008, Cindy said…
Miranda, you are applying it to the whole head each week? Are you sure you are doing the same thing and not DCP? We are just doing areas at a time and yes she will be real itchy. We have never given Sam predisone for anything. Di you apply the 1% or the 5%? Samantha has had to stop for a few weeks, but we are starting up again this weekend. She developed a full body rash and the doctor believes her whole body is reacting. The rash has finally cleared this week and has had a good rest. The doctor has cut the dose to .05%. She said this could be a good thing, that she has seen regrowth after this kind of response. So far, I have seen some patches of white hair in a few places and I hoping it will turn to color soon. She has a few strands of hair in color, but there are no real signs of growth yet. I am just waiting to see. We will apply tomorrow and hope she does not get a rash again...
Sam still has a mark too...keep me posted..

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