Replies to This Discussion

Permalink Reply by Ellie on October 1, 2010 at 9:25pm

My daughter was 2 1/2 when she started losing her hair. I tried the topical meds. They worked to an extent. My daughter is now 5 1/2 and she has no hair on her head and hasn't in over a year and a half. I stopped all "treatment" over a year ago and an very happy with they way that she is taking it. I went through the blame of this as well and there really is no reason to blame yourself. Just keep supporting her. My daughter has taught me to be strong and accept things that I can not change.

Permalink Reply by Jenny Jones on January 21, 2011 at 12:41pm

My son was 10 when we first noticed balding spots. He has a habit of twirling his hair so we thought that caused it. We took him to the doctor and it was misdiagnosed as ring worm. After that treatment only made it worse they realized what this was and sent him to a dermatologist. When my son was first diagnosed (which was about 3 years ago) he was sent to the dermatologist. The dermatologist perscribed a sterioid foam for his head and told us to use foam rogain. three times a day. We did that for the first 3 months. Even with insurance the perscription foam was about $100. At this time he had 2 bald spots the size of half dollar on his head. One at the crown and one towards the front. The foams did help it grow back faster but not two much longer a few more bald spots popped up. WE used the foam again and same thing happened. We hit a rough patch and couldnt afford the foam so quit the treatment. Just to see what happened. Basically, the same thing happened. It got better than worse. He always has at least 2 bald spots on his head. The medicine didnt really help much. We have decdied to take the Do nothing approach as well. Now we just keep his hair a bit longer (its really curly) and try to style it around the spots and work on his self confidence in other areas. It has taken us some time to adjust (almost 3 years now) but we are doing it. Good luck to you.

Permalink Reply by Evie and mom Gail on January 31, 2011 at 9:21pm

Hi Lara, our daughter has a slightly different case as she has universalis, and only recently got eyelashes on one eye. We saw one of the best doctors in the UK for this condition, David Fenton, and he basically said there is very little chance of it ever coming back. Light or light therapy can help, and there are terrible creams to create eczema and systemic drugs to turn off the immune system and steroid shots, painful. So we have opted for no treatment and she has a wig that she uses once in a while, but mostly just goes bald or with a little stretchy hat in the winter. I have heard that you can try things that calm an inflamatory condition, like tumeric, and omega 3 oils that wouldnt hurt her at all. Don't feel like a failure, I think there isn't much you can do but help her feel confident and pretty and that it would be nice if her hair comes back but really it doesn't matter in the grand scheme of things. PS, Evie also goes to ballet in a little knit cap.

Permalink Reply by Angie on March 6, 2011 at 4:37pm

I agree with everyone who says the "do nothing" approach is the best approach. There's no benefit in chasing a so-called cure through the usual avenues of traditional medicines. The alternative practitioners out there agree that if you were to treat this, you should use the most natural methods. We've been working on diet and supplements and that's where we have had the biggest victories. This means skin and digestive problems have improved tremendously and hopefully, immune system strengthened. Still some work to do there because my son won't eat vegetables.

I feel if we could just get the mineral levels up, that would turn the corner on the hair situation. Until we have brought his eating habits to a proper state, I can't accept the fact that his hair won't grow back. As he gets older, he understands more about how important good nutrition is. He chooses to eat quality fats, protein and grains (the ones he is not allergic to). We avoid McDonald's and the sort as best we can and eat organic as much as possible. He drinks water and not juices (his choice). Gluten-free and all these choices are hard, but we do our best. Once we've reached the point that we can say we've tried our best to give the body what it needed to heal, and the hair still doesn't grow back, then we will accept what it is.

Permalink Reply by Lynn Bell on March 6, 2011 at 7:18pm

Hi Angie,

My fourteen year old daughter was diagnosed seven months ago, and now has no hair anywhere on her body. Thankfully, she is doing pretty well - finding her strength on the inside, and knowing she is beautiful with or without hair. In fact, she often goes to school without a wig or a hat!

Thank you for sharing that you are trying gluten free and nutritional options. I have been leaning towards trying to strengthen my daughter's immune system through digestion health. Do you know of any websites or books that might help with specifics regarding this kind of diet and vitamin intake? Thank you for any help or direction you can give! God bless you,

Lynn

Permalink Reply by Angie on March 6, 2011 at 8:14pm

Hi Lynn,

I'm sooo amazed by children like your daughter who have the confidence to realize that they ARE beautiful no matter what! God bless her!

I just finished watching the DVD, FOODMATTERS. According to Hippocrates, "Let thy food be thy medicine."

You absolutely must MUST see this documentary. http://foodmatters.tv/ It's only $4.95 to watch online, but I have purchased it to add to my library. I'm so adamant about drugs and negative medical professionals who only have one way to look at things...write a prescription!

Here also are some of my personal favorite websites:

http://www.mercola.com/
http://www.healingnaturallybybee.com/

I found this one site for ayurvedic treatment for alopecia somewhere from another post in AW. Although I wrote to them and the Dr. recommended that I continue just boosting the immune system and not try any treatment specifically for alopecia, I am going to try the product. If you're interested, I'll keep you posted on how we do with it. Here is the site: http://www.alopeciacure.com/typesofalopecia.html

Permalink Reply by Lynn Bell on March 6, 2011 at 8:29pm

Thank you sooooo much Angie!
This is the kind of information I am definitely looking for. I appreciate you sharing it with me! Your postive approach is so encouraging. I will let you know what we decide to try. God bless you!!!
Lynn

Permalink Reply by Evie and mom Gail on March 12, 2011 at 8:19pm

Hi Angie,
you mentioned skin and digestion problems- have you found a connection to alopecia?. Our daughter Evie who has alopecia universalis has assorted on and off skin issues (eczema, mollescum a kind of warts, rashes, impetego) and always seems to have tummy problems- she is sensitive to some foods that we have taken her off of. We are just living with the alopecia, and she is pretty comfortable with it, but if we could sort out the other issues and the hair came back that would be brilliant.
Gail

Permalink Reply by Angie on March 14, 2011 at 12:24am

Hi Gail,

Most definitely! There is another group here in AW that I joined called Alopecians with eczema. It is just too much of a coincidence that others who post their experiences sound a lot like our experience. You'll find most people have a slew of other symptoms besides hair loss. Plus, we happened to come across a few excellent doctors who clued us in, although my son had already lost all his hair by the time we found them. My son used to have terrible eczema, but thanks to advice from one dermatologist while we were on vacation in Trinidad, it has since cleared up.

Basically, what we learned is that because of food allergies, our son developed an overreactive immune system. This (alopecia) is an autoimmune disorder where the body feels threatened and in response turns on itself (in this case, the hair follicles). One naturapath explained that, unfortunately, no one understands what the exact trigger is that turned it on, and worse, what can turn it off. In the meantime, treatments specifically for hair growth won't necessarily work...unless we get to the source of the problem...repairing the immune system.

We had a great pediatrician when we lived in the NY area. He has now gone full time into educational lectures and will no longer be seeing patients. However, he gave us a series of supplements and other suggestions to try. His name is Dr. Lawrence Palevsky and his web site is http://www.drpalevsky.com/media_center.asp
He is absolutely against immunizations. He recommended enzymes, probiotics and vitamin and mineral supplements, based on our son's blood work. We realized he was deficient in a few nutrients, so once the immune system settles down, he needed the right fuel to make the hair follicles wake up and grow strong. He doesn't have much tummy problems and his skin is downright amazing! However, we are still waiting for the hair to grow back.

I am still very confident that, with the right diet and lifestyle changes, my son has a great chance of growing his hair back. I get the feeling from some of the posts in AW that some people find it better to just accept the fact that alopecia has no cure and that's that. My son is wonderful and special in every way no matter what, but if I can help him by creating healthy meals and incorporating exercise and the right supplements, why not? It's what we should be doing anyway. Some people want to go on and eat McDonald's, processed foods, etc. and just give up. Not me. We were created to have hair and hair loss is a sign that something is not quite right.

I know I kind of went on and on, but I really only want to help.

Angie

Permalink Reply by Evie and mom Gail on March 16, 2011 at 8:37pm

thanks Angie, that is helpful and food for thought. Evie actually lost her hair as a baby when we started immunizations- they triggered the alopecia. We travel and live in third world countries and likely wouldnt have done anything else, but it is a thought for those who can avoid them. She has a number of food allergies and we have worked out some, and likely need some testing to sort out intolerances. Her eyelashes are growing back now- I guess you could link that with stopping the foods she is allergic to. I will look into it, and get her minerals tested. It's tough, since the first step for us was to accept her as she is and not let her think that we need to find a cure for her to be pretty and loved, but if we can do this in a healthy way, all the better!

Permalink Reply by Angie on March 16, 2011 at 9:55pm

Thank goodness for Dr. Palevsky. He doesn't believe in immunizations and we haven't immunized Deryck since his 2 mos shot. Right after he had gotten that one, he started with the skin problems. Even his spirit and energy changed. His sister had more than he did, but at 9 mos when she started exhibiting the same symptons on the skin, we stopped immunizing her as well. Now, they both have amazing skin.

Permalink Reply by Supportive Mom on April 4, 2011 at 11:20am

Angie I totally agree with you. I am never giving up on my daughter. Helping her become as healthy as she can be is important to me. There is bviously wrong with something in her body or this wouldnt have happened. I feel like, If i sit back and do nothing I'm giving up. Thats not what I ever plan on doing. It feels good to hear someone else feel the same. My daughter has been going through this since summer last year. lost all her hair has a full head now. But is boy short.

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