Thank you Richard. I appreciate you taking a moment to welcome me. Bless your heart for all of the hard work you've done as co-founder!!

Hi Mom of 2~
Are your kids boys, girls or both? I know how hard it can be. I interviewed a lot of moms with children who have aa for my book, "If Your Hair Falls Out, Keep Dancing!" (That's my philosophy!) How are you doing? How old are the kids?
Just wanted to welcome you and say hello!
LeslieAnn

Thanks for letting me know. It's often harder on the parents than it is on the kids! There are many people around this site to support you. It might help to read my book -- you can get it on Amazon.com at a nice discount. Just google "If Your Hair Falls Out, Keep Dancing" and click on the Amazon link.
Let me know how you like it, and take care.

Hi, I wanted to welcome you to Alopecia World. I can honestly say that we are a great community here and I hope you enjoy the time you spend with us. Cheryl, co-founder

Hello Mom of 2, I also have 2 children of which my 13 year old son has AU, he was diagnosed when he was in 2nd grade. He started out with actually the nails, then the patches in the hair, in the last two years, he has lost his eyebrows, and now he only has a couple tiny patches of hair left. His eyelashes are now starting to fall out. He gets upset at times, he just wants to at least have his eyebrows back. So we have again started another treatment, with success, but I am afraid that if we stop, they will fall out. Lucky for us, he really has a great group of friends, who really look out for him.
Well enough right now. Tell me about your children. It is really great to actually be able to finally talk with other parents with the same problems and concerns that I have. We have just finally met other children with the same condition, and now he finally realizes his is not the only one. ---Kristin

Hello again, well we have tried what seems to be everything. We have done the cortisone shots in the eyebrows, they come then they go again. Just about every type of topicals, roggain, chemical reactions (dibutyal squarate, this causes a chemical reaction on the skin and is suppose to make the body fight against it,since it does not know what to fight against (SP)),creams, gels, and even steroid medication. I have trouble spelling some of these long words, that are made up for these things. We are working with the dermatoligist and our eye doctor one a new type of medication that is acutally for patients with glocoma (sp) one of the side effects was darkening of the eyelashes and eyebrows, and we do see it working. Fortuantly my 9 year old daughter has not shown any signs, but who knows what is in the future. Matthew seems to have always been my medical child, but he has not been sick since kindergarten. I have always thought that his ammune system was to strong, and it just has nothing else to fight. I am just hoping something will trigger the folicals to start again. Hope to talk again. Kristin

Dear Kristen: I'm sending very positive thoughts your way. I'm glad you've found something to trigger the eye lashes! A few years ago, at a Stanford Parent Support Group for Parents of Kids With AA, I met Dr. Vera Wang. Dr. Wang is a co-founder of the NAAF, and she practices at UCSF. She is known as a leading expert regarding AA, AT & AU. I wish there was some way you could check with her office to learn if there are any other treatments out there for AU? All of the beautiful people on this site have so much courage, inner strength and confidence to just go bald and say, "This is me." If it comes to it, I hope our kids would have the same attitudes. However, we have children, and we know things are rough enough going to school and growing up! We don't want our kids to go through any difficulties. If we can get this darned hair to grow back, let's do it! I'm sure you know what I mean. I hope you keep in touch. Without sounding like too much of a "Bible Thumper" I will keep you and your family in my prayers. Take care of yourself and those precious kids!!

thank you! i actually did find a way to get my wig to stay on! =)

Hi Mom,

Jeff in SFO

Hi Lynn, it was nice to log into my email and see a note from you. Your daughter and Melissa are the same age, and seem to be going through the same thing. Melissa's spots are along her hairline starting below her left ear, she has 4 spots as well. 2 of the spots grew together as one. Melissa is horrified of needles and will not do the shots, we tried when she was 9, she freaked out! We also use Rogaine and were using Clobetasol. I went out and bought the 3 pack of generic Rogaine when we found the 1st spot in March. We have not used much of the 1st bottle. Melissa doesn't much treatment this time around. 3 of the 4 spots are growing, and we just noticed the 4th spot the other night. It worried me when she started getting spots along her hairline, as I hear this is faster losing area and hard to grow back. But i'm pleased to see regrowth.

Ok, sorry so long. Please post again, i'd love to stay in touch!

Hugs,
Carla

I sent you an friend request. I'd love to be able to email with you as well.
I forgot in earlier post, when Melissa got her 1st spot, she didn't cover it. It wasn't until she started losing more hair, that she wore wide cloth headbands and then bandanas. She even wore a few hats as well.

Have a great rest of the day.

My daughter has had AA since she was 4yrs old. Attempting to treat it with shots is something that we started almost 2yrs ago. If she gets them on a regular schedule it helps a little but when she doesn't the spots get worse. We just moved about a year ago to another state and trying to find a good dermatologist that understand Alopecia is hard so it's really bad right now. I think her system has adapted to the shots so they may not be as effective, but she has an appointment in a couple of weeks for us to see a new dermatologist.

hi lynn thank you for your comment i really don't know if i can get through this because everyday its getting harder and harder for me every time i drop off my son in school im thinking what is going to happen if somebody see the bald spot are they going to tease him and i cry and cry while driving.its been 3 months and the feeling still same. its really hard and i dont know what to do. i really appreciate your comment thank you very much.

hi lynn thank you for your comment again.

Hello! It is so nice to talk to people who know what this is all about. Overall, do you think the steroid injections are worth it?

Hi Lynn, very nice to hear from you. I have not treated my son since he was about 5. At the time we tried several treatments and none with any success. After he lost everything, I decided to stop. He is 9 now and has had no regrowth at all. We are still hopefull but I am leaving treatment up to him. As for my daughter, she did loose totally as well, but has about 2/3 of her hair back now. And that was just on it's own w/no treatment. She has recently developed some new spots, so I am not sure what is going to happen. This disease is so unpredictable as you know I am sure. I am interested in how your kids are with the injections? I was just afraid it would be to painful. Also, did your doctor have any insight as to why both of them have AA. I am still curious as I think it is pretty rare. Thank you for contacting me, hope to hear back from you soon.

Hi Lynn. My family is doing well how is yours? Well I decided to use these items because I wanted to try a more natural route instead of the prescriptions from doctor's which were really for eczema and psoriasis. I went to the natural food store and they were helpful with which oils helped stimulate the scalp and possible hair growth. So I am not sure if it is just luck that it is coming back (still see a tiny bit of loss) or if the oils are helping. I am continuing to use them. SO these are the items I am currently using:Avalon Organics scalp treatment shampoo tea tree enriched with beta glucan, Thursday Plantation Tea Tree Conditioner, Aura Cacia Rosemary oil, Aura Cacia Lavender oil, Aura Cacia Red Thyme oil and Desert Essence Pure Austrailian Tea Tree Oil. I am sure the brand names don't really matter but just make sure if you choose this route to be sure that it is 100% pure essential oil. What I do is wash her hair with the shampoo and conditioner and let it set for a few minutes to really get in her pores. Then when she gets out I put about 5 drops of each oil in the palm of my hand and give her a nice scalp massage and really work it in to her skin. I hope this helps like I think its helping me. I hope I helped you and good luck.

Hi Lynn. Yeah I hear you about the prices of the health food store. Im lucky to have a great mom who buys them for me. The oils are $15 a small bottle!! She started out with two patches on the sides of her head, that I noticed last October. It didnt take that long to all fall out. I think the picture I have on my page was in beginning of July. I should put up a picture of her now. She still has a ways to go but we are keeping our fingers crossed that she falls in the percentage that it comes back and stays back. But yes I took her to a pediactric dermatologist and he told me everything I already knew. It was basically a waste of money and time. My insurance didnt cover it but I did it for my mother who is more a mess then myself and Julie. I dont know how she would take to the injections she still has quite a bit of bald spots. What do you mean by change her diet? I would like to hear more. Thank you.

Hi Lynn, first of all thank you for accepting my friend invite. This is actually the first time that i have talked to someone other than my wife or family about my sons Alopecia and will understand what i am talking about. My oldest has had Alopecia Totalis since he was 3, when he was diagnosed i thought that i had done something wrong with him (i don't know how else to put it) like not giving him enough vitamins or there was too much stress being put on him. I was confused and scared ( btw i was only 17 when he was born). My mom was the one that told me that i should not treat him any different than i would a son with hair. I don't know if that makes sense to you? I felt like i should not let anyone stare at my son. I felt so over protective towards him. I don't know if his first day of school was harder for him or me. ( WOW I AM LETTING OUT ALOT RIGHT NOW!!! THANK YOU LYNN FOR GIVING ME AN OUTLET) When he came home from his first day of school i had already imagined the teasing, the laughing at his expense. So i sat him down and asked him about his first day. His response was "can i go back right now". I knew right their and then that he was going to be ok. Since then he has excelled in sports mainly football tell your little football player that even NFL players have been cut from pee wee football teams. He has never had any kind of treatments. Their was this one Dermatologist that suggested Cortizone shots to the scalp when he was 6 but the look that my son gave me when he heard about it was NO!!! As for it running in the family i have nobody that has had it or in my ex wifes family. As for the 10 year old he started getting bald spots when he was 8 then the spots would grow back. About 10 months ago he started to lose about 3/4 of his hair. So he made the decision to have his older brother and me cut off the remaining hair and shave it. He is having a harder time with it than his brother. Their Stepmom has also been their to give them any kind of support. We just had a newborn so i guess i will find out whether it was something in me or my x wife or maybe it was the combination of both of us. Once again thanks for the ear... if you have any more questions let me know

Hi Lynn,
Sorry it took me so long to get back to you. The cream is called Lidocaine and Prilocaine cream, 2.5%/2.5%. This cream work awesome. My son doesn't feel any of the shots he gets. From what I understand many if not most dermatologist do not suggest or offer this cream to patients. The only reason I was able to get a prescription for it was because I knew that there was a cream that is used to numb areas for injections like IV's so I asked the new dermatologist about it and he was happy to give it to make the injections painless for my son. I asked the first dermatologist we brought my son to if there was anything that could be used to numb his skin and he said no. I knew there was but assumed it couldn't be used on the scalp since the derm said there was nothing. I still feel bad that I allowed him to inject my son with 17-18 shots a visit without researching the cream to find out if in fact it could be used on the scalp. I can't stress it enough, if your child has the injections and you feel that they are to painful for your child don't let your dermatologist tell you there isn't anything that can be used to numb the areas for injections. With this cream all I have to do is an hour before his visit I apply the cream to the areas that he will have injections and then cover his head. I was told to use a plastic cap but they were all to big for my sons head so I use plastic wrap which the derm said is fine. Covering the head is very important, it helps the cream take effect, I found this out last time because I was in such a hurry I forgot the wrap and my little guy could feel the injections, not as bad but still enough to make him flinch.

Thank you for respnding. I am having a very hard time delaing with this AA. I can't get the image of my daughter being bald out of my head. She is a perfect picture of innocent beauty right now. I can't accept this yet. I don't know if I ever will be able to. At this point I will try anything safe to get her hair back, and prevent further loss. The only thing helping me right now is knowing that I am not alone in this. All of you on this site have beeen so nice and supportive.

Hi Lynn! Thank you for the link (couldn't link directly to it, but found some articles of iodine on that site). I'm glad you decided to go with the iodine in addition to the shots. For my daughter, I place the decolorized iodine on q-tips and apply them to all of her patches. I think it's soothing for her, and helps with the itching and shedding. I was doing this twice a day, but have changed to once a day, in the morning, as she continues to use the clobetasol at night. The clobetasol is oily, so by applying this at night, and using the drying/oil removing effect of the iodine is helpful. She also uses scalp cover to help mask all of the spots. As moms, we gotta keep trying for our kids, whatever it takes and by posting it helps to hear what others are doing as well as feelings. Thank you for posting and keeping up with us!

Hi Lynn,
It is such a blessing to hear that your children are doing well on the iodine!! Though Haylei is still losing hair, it's no where near as much as before we started using it. So we're definitely keeping it in her regime. Now we need to find something that helps to regrow. I'm still researching like everyday! I know I'll be glad when the warm weather gets here, as the lack of sunlight isn't great for Alopecians and I just feel like I need to get her in the sun more. I'll keep you posted on anything new I hear of. You take care of those beautiful kids!

Hi Lynn,

I was noticing that you are one of the few people in this group that has more than one child with aa. My daughter Genevieve was diagnosed 5 months ago and has diffuse aa. I would say she has about 20% hair loss with some recent spontaneous regrowth. She is also partially losing and eyebrow. The other day I noticed that her sister seemed to be losing a lot of hair. She now has a tiny patch on the top her head and the area above both of her ears has thinned out greatly. Our pediatrician is sending us to the derm. for a diagnosis. I think that I am in shock that this could be happening to more than one of my kids. If you don't mind me asking, how did it happen with yours? Was it close together, do they have similar loss? I can't seem to find much on the internet about familial alopecia so I thought I would start asking the people who know the most about it!

Thanks,
Melani Molina

Hi Lynn,
I read your discussion about white iodine. You mentioned that you attended the the Stanford Parent Group. Do you live in the bay area? My daughter's derm. suggested that we joined this group. I will try to attend the September meeting. Hope to see you there and learn more about the iodine treatment - May be it is too late for my daughter, she has only a few hair left.
Myem

Hi Lynn,

All is good here. Hope so for you as well.

I never had any sign of AA before 7/07. I tried steroid treatments in the begining but they obviously didnt work for me so I stopped.
Glad the kids AA are pretty good. Fingers X'd.
Hahaha I love the hairspray line.

Hope your day is a great one!!!

Jeffrey

Hi Lynn,
it was great to hear from you. Hope that things are well with you and your family. It is good that your kids are too young to realize that AA is a life time condition. Let's hope that it will go away soon for your kids. My daughter lost all of her hair back in August of last year. After discussing all of the options with Dr. Price, she decided to let nature takes its course. Since then, she has some regrowth. Her brows and lashes are coming back slowly. She is very open about her AA. I am so amazed at her abilities to deal with it at her age. She is doing well at school, has many friends, very involved in music - She plays the tuba, trumpet, percussions at her school symphonic band. My husband and I make sure that all the supports are there for her.
Happy New Year.
Myem