Replies to This Discussion

Permalink Reply by Karen Leffingwell on October 31, 2011 at 8:45am

We've been in the same situation as you with the insurance companies. I did the "home remedy" approach as well and for a while, it seemed to work. I believe it is all cyclical, and if it's going to fall out, it's going to happen no matter what we try. I did find one thing that I believe worked quite a bit--it is called Dhathri Herbal Oil. Our dermatologist told us about it. I found it at dhathri.com. It comes from India and is a really stinky, smelly oii. But it did seem to promote hair growth, and at least made the hair she had stronger....It was pretty inexpensive--about $30 for 2 bottles and they shipped it and I had it about a week after ordering.
Good Luck. Karen

Permalink Reply by Lara (Becca's Mom) on November 3, 2011 at 1:24pm

The progression of Becca's Alopecia has moved to her eyebrows and eyelashes. She used to have very thick eyelashes so the loss is pretty dramatic. I started to notice it a couple of weeks ago but said nothing in front of her. Just wanted to wait to see what would happen if she noticed etc. After all she is only 5. Well it happened last night while she was taking her bath. She asked me why I had more eyelashes then she does. I kept it simple with the answer of "we are all different" :(

She has been coping pretty good...when she is with me I give her the choice of hat or wig. She wears a wig to school 1 or 2 times a week. Her father will have nothing to do with the wig (of course) actually told me that he would throw it away if it made it's way over to his house. (I have no words)

On a funny note (have to have something positive to say)...my aunt sent Rebecca a Halloween Card. It was a mask of a cat with whiskers. Only one by one the whiskers were falling off...to keep her from getting upset that her kitty mask was "falling apart" I told her it was an Alopecia Cat. She thought this was funny...and as it lost its last whisker she said to me...."mom it really is an Alopecia Cat!" awwww my little sweetie.....

Anyway, thanks for the continued feed back....

-Lara

Permalink Reply by Cristine on November 13, 2011 at 11:24am

Never give up hope. My son Ben lost all of his hair by age 5; I mean everything, he did not have a hair on his body. When he was 5 we went to a pediatric dermatologist who treated or tried to treat alopecia, he really had no answers for Ben and we didn't want to take the steroid treatment route on a 5 year old. We really did nothing except support Ben just as you are with your daughter and his hair started growing back when he was 7, he is 8 now and has light eyebrows, a full set up eyelashes, body hair and almost a full head of hair. When his hair started coming back in patches of dark hair, and we would simply shave the patches weekly because it looked a little odd when the patches of hair were long. Slowly the patches became larger and larger and we let the patches grow out. He still has bald spots but we can sort of cover that up with a little longer hair style. Never give up hope, we have no idea why his hair came back and we know that his hair could be gone tomorrow.

Permalink Reply by Julie Kurth on December 3, 2011 at 9:53pm

Do not be so hard on yourself. There is not one certain thing that works on everyone or even works at all. We tried all kinds of creams, etc. Nothing worked. We were told to use mens' Rogaine and we did that. It did produce some fuzz for my daughter but she also started growing hair on her face. There really is no cure so don't feel like you have to do anything at all. We are not doing anything at all right now. I, too, want to sit down and cry and sometimes I do. We HAVE insurance and still nothing works. PLEASE do not be so hard on yourself. The fact that you are not able to do anything medically right now does not mean that if you did, it would help anyway. Be VERY thankful that she doesn't care right now. If she doesn't want to wear hats, that's ok. Also, you may want to try to find a support group in your area. Good luck to you and, again, the result would probably be the same even if you could do more.

Permalink Reply by Lara (Becca's Mom) on December 6, 2011 at 11:41pm

Julie-

I actually met a mom from this website that happens to live not so far from me. Her daughter is about 2 years older than Becca. We met in person for a play date. It was really good for Becca to meet someone else that has experienced the same hair loss and it was good for me as a mom to see another mom cope with it. This past month she took me to the support group that meets in our area. It is an hour commute to get there so it was nice to carpool together. I really enjoyed the group, although my ex would not allow me to take Becca since it was his custody weekend. They don't meet again until February and thankfully it falls on my weekend :) in the meantime I plan to get some more play dates scheduled. (kind of hard to do at the moment since everyone is so busy with the holidays.

-Lara

Permalink Reply by Julie Kurth on December 7, 2011 at 10:26am

Good for you. I'm glad to hear things are going better. Have a great holiday season!!

Permalink Reply by Karen Leffingwell on December 7, 2011 at 10:31am

We've done it all too, except no injections. Emily has a great attitude about it. Sometimes it grows back a bit, then falls out again. We found something wonderful. It is the Hair Club for Kids. Remember years ago the "I'm not only the President, I'm also a client" ads that were on tv? Well, they run a program for kids, too. It is wonderful--we'll be getting her hairpiece at the end of December. There is no cost until she is 18. It stays on for up 8-10 weeks--is styled, dyed, whatever they want. Can't wait to see it!

Permalink Reply by Lara (Becca's Mom) on January 3, 2012 at 11:26pm

Oh my gosh!!! I totally remember those commercials. Did you get your hair piece? If yes, how does it look....please tell me more!

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