Alopecia! What Do I Do?

Hi A.! I know it is hard dealing with this. I have a friend who I went to high school with that lost the battle with alopecia totalis. She has no hair on her entire body. Luckily, it has caused her to grow into a very inspiring woman. She wears a wig unless she's at home or at an alopecia convention. She's a beautiful woman even without hair. And she jokes about saving money on shampoo and not having to shave her legs!

I don't have much advice to offer you since I haven't dealt with the medical side of it, I'm sorry. I just wanted to offer you hope that if it can't be helped, that there are many out there that are going through the same thing, and they're all beautiful people.

Well, I can't give you any advice as to herbal or natural remedies, as I have not experienced this myself or in my kids, but I can tell you that this conditions is not as un-common as you might think. I am from a small town (unter 1600) and know well 2 people, un-related, that have this condition: 1 30-yr old lady that used to be my neighbor and that has had it her whole life and 1 10-yr old boy I used to baby sit. The lady had it so bad at times that she had to wear a wig. The boy, they just deal with it and cut his hair to best work with the "spot".
I can't tell you anything about it that you prob. don't already know, but just know that many people do have this condition and I am sure there is a specialist that deals with this sort of thing. Look around and hopefully you will find one!

Best of luck!

My daughter had a patch of hair disapear when she was about 5. It was not diagosed as alopecia, but I took her to a great dermotologist named Raymond Blackburn in the St Paul building at 5959 Harry Hines Ste. 320. He prescribed a cream that he developed (filled a the Minyard's pharmacy on the ground floor). It cleared up and the patch grows hair again. Now at 10, my daughter has a head full of healthy hair. Dr. Blackburn is so good, we have even gone to him when he wasn't on our medical plan! He is popular, so be patient.

It looks like you've already received some great advice. I found some info on Web MD that I thought may be helpful:

http://www.webmd.com/skin-problems-and-treatments/hair-lo...

Also I have a friend who had alopecia when she was young, she lost all the hair on her body, but then her hair on her head grew back. (None of the other hair did.) A guy I used to work with had alopecia and he was bald and it looked OK.

I would also consult your pediatrician and find another dermatologist. There should be something that you can do that will help!

Good luck!

Hi,

My name is Dr. L. Cawthon. I'm a natural health and wellness practitioner who has worked with this type of situation before, and yes, it does sound severe. I would be happy to help you and your son with this by talking with you and finding out what the best approach would be. You can contact me at ###-###-#### or ____@____.com Well,

L. Cawthon, D.C.

Hello A. H,

I am a 34 year old mother of three and I have suffered from alopecia for 10 years. I had the most severe case of alopecia. I lost all of my body hair, including eye lashes. There are severe different treatments for alopecia but the most effective is the steroid injections. I do not know how old your child is but it is somewhat painful and you have to continue to get the shots for a while. Rogain also works. I can tell you that onset alopecia in children is usually not permanent. For adults to get alopecia, it usually is permanent. MD anderson has a research program for alopecia and I learn alot from them, and of course my dermatologist who was wonderful. Please feel free to contact me if you have any other questions........ Good Luck and keep your head up!

S. L

Hi A.,
I am a wellness consultant and I am certified as a detoxification specialist with Standard Process, Inc., a 75 year old company started by Dr. Royal Lee, D.D.S.They provide whole food supplements. There is not enough room here to discuss this problem with you, but you are welcome to e-mail me a ____@____.com and then I will give you my phone number so we can talk. I also work at CostPlusNutrition here in San Antonio part time.

The only experience I have had was with my 21 year old son, they said it was stree related after his stress went away so did his bald spot, it has all grown back in and all is well.

I had it about 10 years ago. A patch in the back of my head about the size of a nickle. I went to the Dermatologist and he gave me three shots of steroid on the bald spot..teeny tiny needle...didn't hurt. He said the hair might grow back blond due to loss of pigmintation (my hair is brown). My hair grew back brown and everything is fine now.

I would take him to another dermatologist, perhaps one who studies infectious diseases.

I hope you find a solution.

Deborah

Hello A., My name is P.. My husband is 43 years old. When he was a sophmore in college he woke up one morning and there was hair all over his pillow. Within days he had no hair on his body any where. As you can expect at his age it was very difficult to handle. When I married him eight years ago he would not go any where in shorts, or without a hat. He wore glasses to hide his missing eyebrows. (the glasses had no percription) Alopecia had taken his confidence. He said his mother took him to a dermatologist, only to get the same answer as you did with your son. We have since been to many dermatologist and many have said if you catch "it" soon enough you can save the hair. Dont give up!!! Keep searching until you find someone who can help your son!!! They say it is not hertatary, but we have found five people on my husbands side of the family with this. One nephew went as soon as his hair began to fall out and they gave him some kind of shots and his hair has been restored. Do your homework, go to a doctor that is familour with the disease. It can be stoped. We have found it runs more on the female side of our family than the males. Good luck and we will be in prayer for you and your son.

I am not 100%, but I don't believe there is anything you can do for alopecia. I knew a gentleman that had it as well, and he lost eyebrows and eyelashes along with body hair and the hair on his head. Sorry you've had to go through this, though, may God bless your sweet family. Good luck with your pregnancy!

Hi,

My name is L. and my nephew, Charlie, has Alopecia. He is 14 years old and has been suffering with this disease, amongst others, for a couple of years now. He lost all of his body hair - including nasal, which caused problems due to his asthma and allergies. For some reason, his hair is now growing back. I don't have all the information you need, but can get it from my sister if you would like it. My sister has researched everything on this disease, including hollistic alternitives. Did you know there is an Alopecia society? It is sponsored by a famous basketball player, which his name is all of a sudden lost to me, he also has this disease. I am new to this website, so I don't know how we are to get in touch with each other.

A., i know you're looking into alternative medicine but don't know if you're thinking of natural medicines in oral form or what. but don't exclude acupunture. best to you and your little one.

Have you contacted naaf.org?

I had always heard that alopecia was not reversable. I've know adults with it, but only b/c they told me they had it (wigs can look very convincing).

Hello A.,

I was checking the daily site and came across your message. I have a son who started to show signs of alopecia at the age of 2, he is now 13 and still has pacthes missing. My ex husband and I tried many types of creams and there was never any improvment. Went to some specialist in Dallas and a few seminars, it is a heridity dx. and usually there is no treatment for severe cases. Now there is a society for alopecia that is nation known. I will get the web site for you if you want and maybe you can check it out.

If you have any more question or want to know anything else please email me at ____@____.com.

Thanks for your story T.

Although I have never had to deal with Alopecia specifically, I have used alternative medicine as the primary treatment for my whole family for over 20 years. There are a few over-the-counter things that I might use to break up a severe illness, but I always revert to the herbals, etc. within 36 hrs.

You can locate a naturopath near you in the yellow pages, but I have just used an older copy of the Merck Manual and herb books to find what I need. First, I look up what I suspect the problem is, look for how Doctors treat it, and then cross reference to my own books to find the alternative that seems to come the closest.

If this has been going on for over a year, I recommend that you try to find a naturopath who can give you a little guided help. They may know something that you would have trouble finding in a reference guide.

Good Luck!!! H. M.

A.,
You have an amazing attitute to see your son as a beautiful gift. It shows how beautiful you are. I have not experienced Alopecia but I have four children. One thing I have learned is to pay attention to my feelings. Shop around and find a doctor who really hears your concern and addresses it. A doctor who will refer you to a specialist. Before you experiment with alternative medicine find a specialist.
Thanks,
L.

I had alopecia as an adult. I was scratching my head one day and found a spot about the size of a silver dollar as smooth as a baby's butt. I went to all kinds of doctors. Then my pharmacist said I should go to the chiropractor. It was a simple pinched nerve in my neck. After a couple of treatments the hair started growing back.

I would get a second opinion from a pediatrician. Hair loss can be signs of other problems. As an adult I began losing hair and it turns out I have an underactive thyroid (treatable with medicine and now full head of hair). I have never heard of a young child with severe hair loss. Good luck and let us know what you learn.

Hi A.,
I looked up Alopecia to see what caused it and found out that its an autoimmune disease and could be hereditary. And I noticed that you are looking into natural remedies. Well the best natural autoimmune remedy I have found is Xango. It's a mangosteen juice that has been used for 1000's of years by the southeast asian culture, mainly for skin disorders and internal maladies. You can only get it thru a distributorship so I will include my website so you can order it. My 13 yr old son started to get patches on his head and I started to give him the juice to drink and applied it topically (which is what the asians did) and about a week or two later the spot was gone and he was better. Not to mention that he hasn't gotten sick from the flu bug thing that's going around at school and everywhere else. My 12 yr. old son did have to stay home 2 days from this flu, but that was all. I gave him about 3 oz of juice 4 times a day while he was home. I gave my 13 yr. old 2 oz in the morning and 2 oz at dinner. They take the juice regularly now and are doing well. This is just juice so very safe, non toxic and it doesn't taste bad at all. I drink it myself for my arthritis & carpal tunnel. You can put it in other juice or water too. Anyways I hope this helps and please don't be afraid to try it. Pregnant women take this juice, infants and kids of all ages. So please visit my website so you can learn more about it. wwww.freedomfrommeds.com

And please don't hesitate to call me if you have any questions about this juice. I live in San Antonio.
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W. R.

A friend of ours son had it when he was around 3 or 4ish, they went through the same thing and they didn't think it would grow back either because it took longer then the Dr said, they were really worried. But it did grow back and now he is fine.

Has your son been tested for celiac disease/gluten sensitivity? It is much more common in kids with down's syndrome and it is a known cause of alopecia. You can google and find references in medical journals. If your doctor won't run the test, you can have it done yourself ( a non-invasive stool test) at enterolab: www.enterolab.com
The treatment for celiac/gluten sensitivity is a gluten-free diet, which means you have to avoid all products with wheat, rye and barley (which includes most processed foods) and most oats (unless they're guaranteed to be gluten free). I recommend the testing before trying the diet, otherwise, you're far less likely to get support from family, schools and doctors in sticking with the diet. I should also note that this is a genetic, auto-immune disease with some doctors believing it's the root cause of other auto-immune diseases such as rheumatoid arthritis, hashimoto's (auto-immune thyroid disease), etc. so really anyone with an auto-immune disorder should be screened for celiac. There are currently several MILLION people that have this disease that are not yet diagnosed since it was originally thought to be rare - it's now considered to be one of the most common genetic disorders.

I would also check with your pediatrician to see if there is any other underlying (medical) cause, like a possible thyroid disorder, which can also cause hair loss (including losing eyebrows).

I am uncertain as to what medical course you have taken, but I would certainly take your son to another dermatologist as well as ask your family pediatrician just to ensure that it is actually alopecia your son is experiencing and not a symptom of an underlying issue. Make sure to get a second opinion just in case, as it is very easy for some MDs to make quick assessments without complete examinations. Also, I would consult your pediatrician and/or an herbologist prior to giving your son herbal supplements just to be sure they are safe. Hope that helps!

I personally have Alopecia and the key is finding a good Dermatologist. I'm sorry I don't have one as my Alopecia has been in check for almost 3 years now but it isn't a fun disorder to have. The keep is low stress and eating right.

If you need a good chiro in the Grand Prairie area, I have a great one.

Sounds like alopecia universalis - you need to get into a dermatologist tha will take you serriously asap!!!