Replies to This Discussion

Permalink Reply by Maria, Mia's Mom on March 9, 2008 at 3:57pm

hi my name is Maria from NY. My daughter was diagnosed last year with alopecia. She lost all her her and eyelashes on only 1 eye...It took a lot of tears aND stress before we tried any treatment. do you mind telling me what treatment you tried with your daughter and te results..THe treatment that I was against but decided to do was oral streroids.she grew back her eyelashes and 80% of her hair, it was a real moral booster for her but about 2 months after the treatment ended she has started shedding..She has notice and the heartbreaking thing is to hear your child cry Mommy not again. How do you explain over and over again girls are beautiful even without hair. I Am happy I have found a place witrh parents that will probably understand what we are going through. best of luck to you and your family

Permalink Reply by Janna on March 9, 2008 at 7:18pm

Maria,

It breaks my heart to read this and know what you're feeling. What's harder is trying to explain what's happening to a child who understands what it's been like to have hair, and lose it. That's one silver lining for our little Lynnea, since her scalp hair fell out when she was a baby. To her, she's always been bald, and that's who she is to those who know her well. It's how she identifies herself. I had both she (she's 2) and my older daughter in the bath last night and I mentioned that I need to wash their hair. We have a special organic shampoo that we use on Lynnea to try to promote the hair growth. She gave me this quizzical look at said "but I don't has any hair!!" and then laughed at me. I've explained to her that she might grow it one day, like her sister, or she might not, and that's ok too. She accepts that and thinks she's pretty darn cute. I know that it would be a different situation with her older sister, though, if Isley were to go through AA. It would take a whole lot of bolstering, and funky hats, and "beauty treatments" because she's such a girly girl.

How old is Mia? Something I did that helped Lynnea identify with images around her was I had a dolly made to order to look just like her. There are companies out there that will create dolls that look just like your children. I can't remember the name of the company online (I'm up in Canada, and had someone local on the island do it) but I do know that there is one specific to children with alopecia and those undergoing chemo treatments. You'll probably find it if you google it.

Does Mia have any allergies that you're aware of? That has been a key issue with Lynnea, and since we've gained a handle on them (along with some natural supplements), we're finding that the shedding has slowed down to a stop, and she's getting some peach fuzz back.

Just keep explaining over and over again that she's beautiful with or without hair. It's like saying 'I love you'...you can never say it too much.

Permalink Reply by Maria, Mia's Mom on March 10, 2008 at 5:46pm

Thanks for the reply. Mia is 4 yrs old. she has some allergies but they are not severe. But I sometimes wonder if there is something they can't find. The docs prescribed allergy med about 2 yrs ago when she had a bad allergic reaction to something in disney world..I sometimes wonder if that triggered anything..she is currently taking a childrens multi vitamin and a bvitamin with biotin, because I have seen posts on other boards saying that help. what do you give your daughter to control her allergies? I wish I can stop the shedding now, because she is content and actually almost back to her amazingly lively self once again..she has a little pixie stlye regrowth, she hasnt noticed that the back of her head had little regrowth..and it was and still is heartbreaking, I've been learning to try and accept, but the the month of july when she lost all that hair in a matter of 2wks was the most heartbreaking...
Once again I am happy to have a parent that understands to speak with

Permalink Reply by Miranda on March 10, 2008 at 12:57pm

Oh and the place that makes dolls for kids with hair loss is called "Komfy Kids" or atleast the one I know. It's website is just, www.komfykids.com

How old is your daughter?

Permalink Reply by Janna on March 11, 2008 at 6:10pm

Another one (more like the dolls that I had made) is www.mytwinn.com

The eyebrows and eyelashes are the ticket there, as some kids with AU, AT or AA have lost them. I'd take a moment to check with the doll maker first, to see if the faces come premade, or if they're handpainted.

Also, for parents who are going through alopecia and trying to explain it to their children, there is another doll called "Kimmie Cares" dolls (you'll have to google them) that has interchangeable hair pieces - full, short and bald. They were created with chemotherapy patients in mind, but it might be useful in easing explaining the process of hair loss to little ones. They come in 5 different ethnicities, as well.

Permalink Reply by Miranda on March 10, 2008 at 12:51pm

It has been really difficult for all of us i think, and I have come to love these message boards. We have tried a lot of topical treatments for her. The most recent was Fluocinonide and Protopic. These were not a match for her because the medicine that was supposed to thin her skin a little, thinned it too much and left her with more problems. So, we have been without treatment for atleast 6 months now. At her last appointment, they suggested that in a few months to begin Anthralin. This is a product that is supposed to make an allergic reaction to where she scratches her scalp and it causes irritaiton. I have heard that this has great results, but once the treatment is stopped the hair can go with it too. We have also tried other ointments, all with nearly no visible results. Right now, my husband and I are at a standstill with medical treaments. This last treatment really scared us because her skin was so thin she developed spots and was tested for cancer. We are now weighing the issue of her having no hair against her having something like cancer or an infection, and have figured she is healthy even though she has no hair, and we would much rather keep her that way.

The only things we are doing for her right now is using a product called "Yerba de la Negrita". It is made here in new mexico from black herbs that are supposed to promote thicker hair. Of her hair she does have, this has definately worked. Her hair is much stronger, and shinnier, and a lot more healthy. Another thing that has taken us until now to do, is get her fit for a wig. I always thought that would be hard for a little girl to handle, but so far she is in love with the idea. I think this is a great way that is going to help boost her confidence, I hope anyways. Things have been tough for her because she started getting picked on, and other children have even refused and told her that they do not want to play with her. We even got turned away from a CHILDREN'S hair salon!! It is so difficult to explain to her that she is just like everyone else when things like this keep happenening to her.

I think that with all her regrowths, and then new spots and vise versa we are starting to believe that maybe this is just going to stay. Now, we are beginning to try and find ways to just live with it, instead of against it.

Permalink Reply by Janine-Connor's mom on March 11, 2008 at 6:51pm

Hi- My name is Janine-am married and have 2 sons- Logan is 6 and Connor is 3-We live in Ct. Connor lost all his hair at about 11 months old within a 2 week time frame. He had some patchy regrowth last year for a few months- then that fell out along with his brows and lashes. Well, this past November the lashes came back then white fuzzy eyebrows which are almost half filled in and dark and he has been having growth on his head-It started after the eyelashes but in the last month has been starting to really fill in. I am just crossing my fingers taht it keeps coming and stays-but we all know that alopecia is really unpredictable! We have been to a pediatric dermatologist at Yale -most recently last week. So far our choice has been not to treat- the dr has now recommended minoxidil to help the regrowth thicken before summer. We are probably going to try it.

Permalink Reply by Miranda on March 12, 2008 at 10:07am

Your kids are adorable. I love the one of Connor in the bath. Thanks for posting, and if you have any concerns or questions, don't hesitate to ask the group!

Permalink Reply by Janine-Connor's mom on March 12, 2008 at 9:07pm

Thanks Miranda,
I love that pic also! I think it's kind of like he is floating

Janine