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

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!!!

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. :)

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 :)))

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.

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 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 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

Thanks for the tips!

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

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

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

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

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

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

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

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!