Hi Miranda. I also have a daughter with alopecia. Which one of your twins has it? All 3 of your girls are adorable!!! (three exclamation points...1 for each girl) I hope that we can get to know each other!

Thank you for the nice comment Miranda, and I just want to tell you that your daughter is a very lucky young lady to have such a wonderful mom. She is beautiful, and I know she will be just fine. You have a gorgeous family.

Hi Miranda,
Of course, you can ask me as many questions as you like. I have to get some sleep because I have to be back at work in 4 hours but I'll check back tomorrow night (11:30) when I get out of work. Hope you have a great day.

Hi Miranda, and welcome!!!!

Hello again Miranda,
I really wish I could snap my fingers and make everyone understand about Alopecia so that children, (or anyone for that matter), have to suffer for the ignorance of others. Your daughter is absolutely gorgeous and, believe me, she will be more patient and tolerant of others and they will see right down into her soul. You are such a good mom, and I don't know that I could've have handled it if one of my daughters got Alopecia instead of me. It's that fierce protective nature that us moms have. As far as my acceptance, it took a few years and a lot of tears, but I finally decided that I was going on an acceptance crusade and what better way to make a statement than to tattoo my head!!! That was my therapy, and since then I have loved showing my head off and telling people that I'm not crazy, I just have Alopecia!!! Hope this helps and if you need to talk more, feel free to email me. Big hugs......Dotty

How is Della liking her wig so far???

Hello Miranda,
Our babies, they are so beautiful. We are blessed to have them. Looking forward to talking with you.
Brandie

Miranda, I will check out your thread on MSN and post there later.I am still figuring out this board...I sent you an email yesterday did you get it? Cindy

Hello Miranda! Your daughter is beautiful! I can't imagine how tough this is on you as a mom. What I do know from my own experience is that when I acted like there was something wrong with me, that is how other people treated me. Slowly as I began accepting myself with no hair others began accepting me to. So many people now comment..."minutes after meeting you we don't even realize you have no hair." Its because I am not always thinking about it so neither are they. But it is a process and your daughter and you and your family will learn some incredible lessons in life, faith, love, strength, beauty, etc along the way!
Keep Shining!
Laura

It's national care week...
time to send messages to all your friends, telling them how much you care about them.

Without friends
you would be missing out on a lot.



A friend should be radical;

They should love you when you're unlovable,

Hug you when you're unhuggable,

And bear you when you're unbearable.

A friend should be fanatical;

They should cheer when the whole world boos,

Dance when you get good news,

And cry when you cry.

But most of all, a friend should be mathematical,

They should multiply the joy, Divide the sorrow,

Subtract the past, And add to tomorrow,

Calculate the need deep within your heart,

And always be bigger than the sum of all their parts.



I care about you.
Have a nice day, and
I'm glad we are friends!!! Delete Comment

Hi Miranda,

First i want to thank you for the comments, I too think your daughter is very beautiful, all three of them are. I know how you are feeling about the wig, it has been a long process for us, First savanna was excited to get it,after she recieved it the excitment wore off, the first one she got she cut it all up, then i waited until she was 4yrs old and i got her a new one, but honestly she never wanted to wear them, she likes to wear ball caps or the floppy hats like in her pictures, I just quit trying to get her to wear them and do like you said and let her go "commando". On her own she has decided to start wearing her wigs, she likes to wear the floppy hats with her wigs it holds the hair out of her face, but we found the curly wigs are easier to pull back and put in pony tails and still look a lil stylish, we also use the fabric headbands to hold hair away from her face, because like your daugher she can not stand it in her face...
I think it is easier to let them start when they are ready, i know it is kinda hard, Alopecia doesnt stop savanna from being who she is, I dont hide who she is i accept her the way she is and i let her know i love her with or with out hair.


I keep savanna involved in all activites possible to boost her self-esteem, My daughter takes dance, played softball, cheerleading for football, she can ride a 4wheeler like a pro and swim like a fish. She has so many friends from school. All my friends except her and all her friends parents accept her and treat her so good, I couldnt tell you how many kids come over to play with her. I hope everything goes good for you and your daughter, I believe if you give her time she will come around and want to wear the wig...

Glad to meet another concerned mother,
Maria

Miranda, I am glad to hear that Della's spirit is back..She will wear the wig when she is ready if she chooses..Keep in touch!!

Cindy

Miranda

Samantha just a package from Heavenly Hats, that organization you mentioned that Della received hats from. Unfortunately, they are all winter hats, but she got a build-a-bear that she loves!!! I think I want to talk to her school about participating in the hat parade so we can give back and raise money...Thanks for sharing this organization with us!! Cindy

I am a bit disappointed because I asked for summer hats, but what can I do..Yes, when they are made kids make a wish..We were at the mall once and BAB was asking kids to make bears to be donated for some organization and Samantha made one and did all the steps...The bear matches her room so she is super excited..I will let you know if her school will the hat parade..Cindy

Miranda, I have a possible headcovering solution for Della since she won't wear the wig. I had gotten Samantha a headband with hair sewn into it. She has been wearing it lately when not in school. We initially had a hard time getting it to stay on because she had too much hair i guess and it slid off, but now that she has none it fits..I got one made with synthetic hair and a cloth kind of bandanna..I am now getting her for a bit more money one that is made of microfiber and is adjustable and has human air. This one should be more conforming to her head. Before Samantha lost all her hair she was wearing scarf headbands to cove her patches. I asked to get it without bangs and she took off some money..Here is the website if your interested. www.hairdanna.com and hatswithhair.com. I can post a picture of Sam in them once i get the new one. If this fits her better I will order another for the summer..Cindy

Absolutely Miranda! This is really like wearing your own hair..They are pretty cool and I will email you when we get the new one with my feedback on the product..It is definitely something she can wear to school and it won't be as heavy as a wig..Cindy

Hi and thanks for the welcome.
My daughter and I have been dealing with it for almost a year now. However, we just recently found out what it actually was. I still have my doubts because the dermatologist never did a culture or did a test that came back and said that "yes this is in fact Alopecia". If you dont mind me asking, what test did they perform for your daughter?

Hi,
My name is Jennifer and my 5 year old son has alpoecia areata. He is also a twin but a fraternal twin. I would love to get your e-mail address so we can chat. How do I do that?

Miranda, That is great news!!! How is that your insurance will cover the transportation costs to the MAYO Clinic? Insurance does not pay for the medicine and it is made in a special pharmacy. It cost me $30.00. I personally would be weary about having a doctor unfamiliar with this treatment supervise it without having a doctor he knows that is familiar with with help him. If the applications are applied incorrectly and/or if he does not get the dosage right Della will be subjected to a harsh reaction. Our doctors have been very careful with Samantha since she broke out in blisters from the skin test. We have been taking it slow with her ,but finally got her on a weekly application. Samantha has not had any visible results yet, but it is too soon. It takes about 8-12 weeks before we may seen anything happen. We will be doing out 6th application this week. The studies are promising so I keep telling myself that I need to be patient. I think you should either find a doctor in your area familar with the treatment or go to the MAYO clinic. Maybe once the Mayo Clinic has Della on a treatment schedule you can do follow up apts with your local doctor. Maybe the two doctors can work together.
I will tell you that Della will have to produce a rash on her scalp where the med are applies and maybe deal with some itching for a day or two afterwards. Samantha really has not been bothered by it. And, when you apply the stuff you need to watch that she does not touch the area. Samantha woke up with patchy rashes on her face 2 weeks ago..I knew she touched her head because her hand had a rash too..This goes to show you cautious you have to be with this treatment..I am excited for you...Let me know what you decide. Are you going to log into chat tonight at 9:30 EST? We can chat more then...Cindy

Miranda, have you been in contact with the mom from you area? She took her daughter to the MAYO Clinic in Scottsdale..Maybe you can get a phone consult with the doctor and maybe he will have a doctor you can work with in your area...Just a thought. Please keep me posted!
I have to say, I am a bit down because I want to see this work for her and I know it is still early, but she has lost both brows and lashes now..it hurts to see he this way..Trying to be patient here...Cindy

Hi Miranda,

Did you get the e-mail I sent you?

Jennifer

Sorry about the duplicate message. I am just getting to know how to use the website!

Miranda,

First, let me say that I love the head band on Della's head. When Samantha was loosing her hair that kind of headband was all she wore until we had no choice but to get a wig. I just got Samantha's new headband with the hair today. I had to cry because the color is about identical to what her hair color was. I can't wait for her to come home so we can try it on. I will post a picture of it. The headband is made of a strong microfiber, almost like the material made of good bike shorts. It should really snug her head. I am still waiting for a new wig for children with hairloss. The color was ALL wrong..Last I heard they were waiting for some to come in. I do pray that when school starts she will have chick boyish hair cut at minimum.

Now, on to the treatment...Samantha goes the Boston Children's Hospital which is the number 1 childrens hospital in the country. She sees a resident doctor and a doctor. The resident doctor does all the follow up calls with me which is fine, but when we have office visits they are with both doctors. So you know how serious this treatment is, the head of Derm did not want anything to do with Samantha's case when we had to schedule a visit with the resident doctor. The head of Derm was her supervising doc for that visit. He said hew was not skilled with this procedure as Our reg doctor and he was not for this treatment. So, we book all of our apts with the resident and the first doctor we saw. They are fabulous and have taken precautions to not get blisters on her scalp. Tonight, we do another application on another area. For this treatment to remotely work you need to get the dose right so 1. she gets a rash and 2. so that she does not get anything more then a rash which can look like a sunburn. The first step in the process is to sensitize the arm. That will tell you if Della's immune sytem will react. You keep doing a skin test till you get the correct response. Once you get the correct response you start treatment. In our case, as you know, Sam got the rash, but then 10 days later she got blisters. It slowed the process down for us, but with caution she is responding appropriately. I hate for you to have a doctor with a lack of experience do this and it not work or more importantly give Della such a reaction that she won't want to continue. Samantha has been a good trooper about dealing with the rash on her head and the itchiness lasts only about a day and she forgets about it when the wig is on. If you doctor can't find anyone there to help I can always give you the number to my doctor for him to call.

Sorry for the novel..Have a good weekend my friend..I hope we can get on a chat one day...

Cindy

I am going to resend it right now! I hope I have the right address. Let me know if you don't get it.

Yes, Miranda I know...I wish Samantha's wig would allow for something to fit over it too..One thing I never did was cut Samantha's hair..I could never do it, but we didn't need to either...Looking forward to her coming home from school so we can put the stuff on...Cindy

Hello Miranda

I havent been on in awhile but i just looked at your page tonight and the new pic of Della are beautiful and you can be sure to tell her I said this, I've been reading about the recent treatments for Della and I am sorry that you had to stop it, maybe your next treatment will work better, I havent tried any treatment on Savanna only because I dont like the side effects of anything and myself I feel she has enough to deal with i dont want to add more to it...We all know there is no cure for AA/AU, I think I will just wait until she wants to make them decision on her own....She made a statement to me tonight that put me in tears...she said " Mommy i wish i had hair because then i would be pretty and people wouldnt stare at me or think i am a boy" What do you say.... I just grabbed her in my arms and told her how much i loved her and that beauty comes from the inside, and as long as she is good hearted and treat everyone with respect everyone will see how beautiful she is....She is excited about getting her a new wig from LOL, and we sent in an app. to children with hair loss...Maybe she will get something soon....Good Luck with Della and her new treatments....Maria

come in chat room..too depressed to sleep

What is going on, Cindy? Sorry I left without notice, but I was really busy, and the connection was lost.

Hi Miranda- I hear you about the new wig. We just got a wig from Children With Hair Loss and I have the same exact feelings and issues.... too full and she is already not digging it. Arg

Miranda..I will post those pics soon..I have an article for you http://www.ncbi.nlm.nih.gov/pubmed/8170854?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA
Have you decided what to do yet?

Chat with you soon...
Cindy

Omg omgomg!! so i just read that you live in albuquerque (sp?) and i ummm well i live in kansas but my dad lives in soccorro, nm and im going to visit him over the summer from like june 14 til like july 7th!! and yea soccorro is just like 70 miles away from albuquerque!! ahh btw i have alopecia universalis, and i have had it for like 7 years.!!! so yea!!! wow idk i think i overreacted!!!

Miranda, just google SADBE and you will find articles on the treatment. If you want me to email them to you off the board let me know.

We went to the Charlie V meet and greet tonight at the Celtics game and Samantha had a great time. I have to say that there were many children in our daughters peers group and even older and I just cried (well, my eyes were watery and I could barely speak)..I don't think I can accept this life style for Samantha. Further, I can't bring myself to tell the town.

I think it is great that your doctor is going to be work with the MAYO Clinic to try this treatment. I can't understand why the insurance company won't pay for your treatment. I will tell you that insurance will not pay for the meds. At least this is what I was told by the pharmacy. It is not an FDA approved med. Too bad the doctor can't find a doctor locally to the treatment. The mom in your area I talked to said that it can't be done in your state. I dk..Please keep me posted on when you move forward, etc..

We just did a treatment tonight. It is still too early to tell if it is going to work. It has only been 7 treatments. We have a long way to go to see if it will work, but I will be tooting my horn if it starts to kick in. The doctor said it may take longer to kick in because we are doing small areas and one spot at a time...Keep in mind that you have to be real careful with the applications and I do suggest covering it with a bandaid until the next morning when you wash it off..

Have a nice weekend..
Cindy

My doctor really believes in this treatment for Samantha. It is the safest and most potent thing we can try and is safe for long term use. She said if this does not work, nothing will ...All the studies are different, but many are favorable...

Happy Alopecia Day Della!!!!!!!

Any update Miranda?

Sound like you are on top of things...I hope you get your expenses paid. i wouldn't see why the insurance would not pay for the treatment (office visits anyway.). Can you take the trip out there with just Della? I know you will need to make a few trips to get started. We were in the doctors office every 2-3 weeks for th first 3 months or so. Samantha has gotten a reaction on her face and I am not sure why. She must of touched, but I don't think she did. needless to say I am a bit panicky. We have only had 9 treatments which seems like forever, but it is not alot. Good luck...cindy