That is great Miranda!!! Della will get great care going to a children's hospital. You maybe able to even fly in and out the same day if you wanted to. I am assuming you need insurance approval because you are seeking treatment in another state. Do you know if the doctors there will want to do this treatment on Della or if they may want to try something different? I will be leaving for Fl Tues morning for a week, but feel free to post to me and I will respond when I can....Cindy

Miranda, that is great news!!!! I look forward to seeing what the doctor says..How were you referred to the doctor you are seeing?

First, let me say that you don't need to buy any special pillows or headbands...I cover the spot with a bandaid because Samantha tends to touch and it has caused rash in other places that were not good. I usually put the treatment on Friday's and if we have some special plans for Sat I wait till Sat. My reason is that Sam ges itchy and can be uncomfortable the next day and the spot is usually the reddest the next day or two. Usually by the 3rd day the redness calms down. I will put the treatment on after she comes home from school or before dinner time depending on our schedule. Samantha does prefer to wear her hairdana's th next day or two because it is a soft headcovering. The doctor has also instructed us to use Aquaphor if she is really itchy, but Samantha usually prefers to deal with it. She has it in her mind the med wont work if she puts it on. There have been a few times she has asked for it because she was really uncomfortable..Hope that answers your questions..I am going to Fl tomorrow, but feel free to email me..I will check my email towards the end of the week when I see my brother...We have a follow up apt on May 13th..Good LUCK!!!
Cindy

Hey Miranda,

I finally got a chance to read your forum post and check out Della's new pictures. Be sure to check out my answer to your question.

Della and her twin are such beautiful girls; given how tough they are I am sure that she will be fine. I told my mother about Della and she told me to tell you that if you are really concerned with how the children in school will treat her in kindergarten then make sure that any school she goes to will allow her to be in the same classroom all the time with the same children. Fortunately, when you're 5 years old, your attention span is so short that alopecia will quickly cease to be an issue, especially when the other children get to know you.

Have a great weekend!!!

I am so glad to hear it!!!

Composing a letter for her classmates' parents is a great idea -- that gives you a chance to "head things off at the pass (no pun intended)", so to speak. Will you know who all her classmates are ahead of time? If you know who they are during the summer (well enough in advance), I would suggest having a party or a group play date -- kind of like a meet and greet so everyone will get to know each other in advance. I think that would help too.

What do you think?

I don't think that she was judging so much as she was being curious. Kindergarten, for many children, is their first experience in dealing with people with all kinds of differences, whether that be skin color, hair (or lack thereof), ability, disability -- anything that marks us as different. Being mixed race (Mexican and Black) myself, my mother recalled a story to me about how when I was little I would ask my grandmother (who was a very dark woman) why she was so black. My grandmother's response was to tell me that it was because God made her that way. When I pushed the issue and asked why, she then said that God would be bored if he had everyone the same color to look at, so he made his own rainbow of people. Then she changed the subject and that was the end of the matter. I think that along with other awkward questions (like Mommy, where do babies come from? :) ), when Angel and Della both start asking these questions, it opens up a great opportunity for dialogue and a valuable life lesson, so take advantage of it!

BTW, how did you respond when she asked that question?

Hi Miranda, I wanted to ask how things were going with your daughter, did she ever adjust to the wig? Also how are you? Cheryl

Thank you, our twins are identical. So far only Sam is affected as the reult of Chicken Pox being the trigger. We will wait and see. Are your twins identical? They look identical. Our twins were in 1 sac with 1 placenta. As infants, they were impossible to tell apart. Now, the only way many people can tell them apart is Samuel's beauty mark on his face and their personalties. I am glad that Cheryl invited me to such a wonderful group. Michelle

Miranda, I am glad you decided to try the SSRI. What made you change your mind? But, it does sound like for Della's mood it is going to benefit her in the long run..Keep in mind you can always take her off it if at anytime you don't like the effect it is having on her.

Have you gotten the mold done yet through children with hairloss. They will make a custom with and you would have in time for school. Sam had her apt at the kids club and is very excited about getting her new hair replacement.

We haven't seen any noticeable results yet, but it is still early. I do think I see some porcupine types of hair in a few areas, but I can be sure since they are very small. My motherly instinct feels like something is going to happen soon. We go to the doctor on Tues and we will see what they say. I have to keep remembering that of the 11 applications she has had only 8 have been consecutive and we need more treatments to see results. Also, we have been applying it to small areas which does not help either..I will be sure to keep you posted and good luck next week..I look forward to hearing what the doctor says..Cindy

Hi Miranda,

What is this new treatment you are trying? Right now Scott's hair is growing back and we have only used fluocinonide. We think fluocininide has worked both times now but the doctor said there really is no way of knowing if the steroid made it come back or if it came back on its own. Both times he lost his hair it was November. Have you found that Della's hair loss has followed any pattern or happened at a particular time of year?

Jen

I have no problem with bloodwork. Just no new drugs. Do you have the link for the info? I will sign the twins up. So far, Stevie is not affected but he is my easier going child compared to Sam who is more demanding. Thanks for thinking of us for the study...

Thanks for letting me know. I think it is great news. Since you will be helping things along you should be one of the first to know if they discover anything useful. Miranda looks cute in her wig. Let us know how the treatments progress. Lynn

I havent been in chat, what do i do to chat?

Miranda
HAPPY MOTHERS DAY !
Maria

Sorry Miranda, I know Della is your daughters name. Guess I was having an off moment. Honestly, some days its a wonder I remember my own name. Ever since I have become a mommy, I seem to be all over the place ( if you know what I mean). My usual organized self is scattered with a million things to do and never any time to do them. Keep in touch with what's going on.

Hey Miranda! My name is Tammie and my son has alopecia. I got your email about the chat tonight for those who will be up in NM, (I also live in ABQ) I would love to chat, but I have to study-FINALS!!! Thanks for the invite, hopefully next time!

Hi Miranda,

I wanted to wish you luck and the doctors and can't wait to hear what she suggests for Della. Samantha had her apt today and we are increasing to 2 applications a week and increasing the size of application. I am so excited. The doctor said it will take some time since we have been cautious, but now that we are getting more aggressive I am hopeful that it will kick in...I hope we can get a chat soon..Cindy

Hi there Miranda,

I was reading your post and I just wanted to take the time to tell you that it will get better as time goes by. When Amber was diagnosed and her hairloss was just getting worse and worse, I went into a very dark deep place. I would cry whilst sleeping, when driving, when cooking, when eating dinner. I cried and I cried and I cried. I couldn't get out of bed, I couldn't really work and I also loss a lot of weight. Basically, I just refused to see the daylight.

I wanted to go and get help and I also took some natural anti-depressants which helped for a while. I eventually saw a counselor and I remember talking to her and crying so much that I had to bend down and hold my stomach. However, she was able to help me and after that session, I have not shed a tear over Amber's condition at all.

I visited many wig specialist and I realised that the wigs are really really good. I took Amber to meet other kids that also wore wigs and talked to them and Amber was able to see them take their wig off. I than began to adopt a very aggressive attitude to her condition and told her straight out whenever she askes me about her condition and what to expect for the future. I have decided that just because she has alopecia, I am not going to excuse her on anything and I also told her that she will never be excused because of it.
I have even told her about the teasing and taught her on how to handle herself if someone teases her.

To me, I guess is that I can just be really upset about it or I can tackle it straight on. Since I was able to do that, I have come along way.

Della has alopecia and the future for her could mean she looses her hair or it could grow back. I guess for our children, we just need to look at the situation as it is and give our children the tools to tackle this condition for themselves.

Miranda, I have been thinking of you and Della..How did it go in Phoenix last week???? Cindy

Miranda, sorry the airport treated Della like a ill patient and I don't blame you for being upset...

Glad to hear the doctor is going to try the treatment with Della. As far as the blisters go. Samantha broke out in blisters, but 10 days later. I would not rule out the blisters being a reaction to the covering on her arm in less you know for a fact that it has happened to her before. The rash could get redder as the week goes on or settle down...When do you go back? I am so excited for Della.

The doctor finally said we can do bigger areas and we are bumping up to 2 times a week now. The doctor said she has not had enough meds in her system to really make a difference since the areas were so small. We are really kicking it up now and go back in July to the doctor. I do hope we see hair soon..

Is your insurance going to cover all of your travel to AZ for apts or will you eventually do your follow-ups locally?

I will be online to chat with another mom tomorrow 9pm my time if you can break away for a few tomorrow. Would love to talk further about your visit..Cindy

Miranda, I wish Della a lot of luck with the treatment..Hopefully, she will be able to bare the itchiness on her head as well as Samantha. Keep me posted..Does she have any hair left? I will be online tonight at 9pm est if you can sneak
away..Cindy

I had one more question. I was wondering what your doctor said about the effectiveness of the SADBE and did he want to try something else? Also, once she is ready to apply it to her scalp how did he say you were to apply it? Will you do one area or two at a time? Samantha started doing one large area at a time twice a week. We will do her second weekly application tonight. Hopefully, her other area won't flare up. We will do it every 3 days. .
Cindy

Della, has to pass the skin test before they will start with her head...It sounds like she is doing well though. Our doctor just told us to put Aquafor on her head for itchiness. They did not give us a special prescription for itchiness. Sam handles it pretty well. We did a second app last night and she is so good about it. By bedtime she had a big rash. I am hoping that we are kicking it up enough do something inside...

Cindy

Hi Miranda's Mom,

I was wondering when Miranda started wearing a wig. Leah will be three in July and has asked for hair point to the top of her head and also a "haircut" as I don't quite think she knows what that means.

I bought her one, but it kinda freaked her out and I think she is still too young.

Tammy

Your daughter is a cutie.
My new book, "If Your Hair Falls Out, Keep Dancing," has a lot of information in it devoted to girls with alopeica. It's a great read and I think you and Miranda might find it fun and valuable. For more info, got to my page; there's a link so you can order it, or cut and paste this to go to the web site: www.leslieannbutler.npauthors.com.
Good luck!
LeslieAnn

Thanks for the tips!

Hi Miranda,

How did the skin test go? I know you still have some time before you see the doctor.

We have had either a set back or a breakthrough with Samantha. Last week she broke out in a rash post treatment and then it cleared, we did number 2 for the week and the rash came back on Thurs. This was almost a full body rash..I called her derm yesterday and they saw in the pm. The doctor told me this could be a good thing, that her body has been upset and it reacting. She explained to Sam that her body has a mad face in side her body and it causing her rash. Sam totally understands why she has a rash and is happy to have it they way the doctor put it. Anyay, she said that she has seen patients begin regrowth after a reaction like this. We are hoping her immune system has won. We are waiting for her rash to go away and let her immune system calm down and in about 2 weeks we will do a treatment and see what happens. if she does get a rash again we may have to half it all together which will be upsetting. The doctor did cut the dose so I hope that helps...

have a good weekend...
Cindy

Hi Miranda,
I wanted to say hello. It's hard having kids with alopecia. I think it's harder on the parents than on the kids! If you feel you need more help, I have written a book called, "If Your Hair Falls Out, Keep Dancing!" and you can get advance copies. I have some good info for parents who have kids with aa, and also some details about how to wash and style a human hair wig yourself -- having someone else do it can be very spendy! But there's a trick to it, otherwise the hair can look funny. Anway, if you want to find out more, go to my page and click on my web site. Take care of the little ones...
LeslieAnn

Hi- sorry it has been so long. As you can see from the picture, Lauryl didn't really dig her wig either although I am greatful for childrenwithhairloss but she just felt like she wasn't herself. She only had about 25% of her hair left so she decided to shave it and donate it "for a child who needs it who is sick because I am healthy- my hair just pops out of my head". She is such a sweatheart... anyway, I decided to show her that I didn't need hair to be beautiful either and shaved it all off before she did hers... she loves it and calls us twins :) We are hoping to start a new trend... in little NH though our heads are giving us the opportunity to raise awareness and decrease ignorance. I guess only time will tell and she may choose to wear her wig in the future, but I don't want to push her because then I worry about someone taking it off, it falling off or tilting, etc.... damned if you do, damned if you don't. But please continue to be strong, especially as our girls enter kindergarten (feels like just yesterday she was born... sniff sniff). I hope you are well.

Hi, my daughter never liked her wig at all so she just stopped wearing it and just went to school without a wig or a hat I think it bothered me more than it did her. She explained it to her friends and they all are very supportive, there are times when she does have her bad days but we just take it one day at a time.

If it is any constellation Samantha still has a mark from her skin test, but she did blister there. We were never given any internal meds for the itch though. I find it interesting how each doctor treats the treatment differently if that makes sense to you. I am very comfortable with our doctors. She still has a slight rash. I am not planning to do any treatments til next week. I need to let her rash heal completely and then I want to give her some body sometime calm.
Keep me post :)))

Don't feel bad about the confused feelings- humans are by nature curious. We haven't really minded questions because we figure that the more people that ask, the more people that have the right information- and they can talk to others etc... just increases awareness. Each mom handles each situation different, so don't place yourself in some type of stereotype. You are doing great and doing the best that you can and that is all you can ask of yourself. I wish our girls could meet- they sound like they would get along... two princesses trying on dresses and shoes... can you imagine. :)

Hi! Thanks for the welcome! Your children are beautiful!!
I have read some articles online about correlations between preemies and AA, autoimmune disease, etc.
This is all new to us, so I'm reading a lot. Actually too much. I'm not getting enough sleep.
I'm going to post an update about Sarah Beth. I requested bloodwork be done last week and we got the results 2 days ago. She has hypothyroidism. She started on meds today. We don't know if the hair loss is from her thyroid problem or if she is fighting AA and hypothyroidism. She has an appointment next week with an endocrinologist. Her hair started falling out 3 months ago. She has about 70% loss on her scalp now and no body hair except for eyelashes and eyebrows.
Your family will be in our prayers. Tell Della we think she's BEAUTIFUL!!!

Miranda, good luck with the doctor this week..I wanted to let you know that I posted 2 pictures of Sam with the headband that has hair sewn into it..She loves them now that the weather is warm here..We are in a heat wave..YIKES..Cindy

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..

How is Della doing?

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

Girl, how Della doing with the treatment? We are starting to see regrowth 4 months later...TTYL.....

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

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.

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

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

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

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.

hi miranda thank you for the welcome.

How are things going for Della Miranda?

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.

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

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

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.?

Check out www.childrenwithhairloss.us