My son was diagnosed with Alopecia Areata yesterday HELP!

[weeluvdisney]

I know it's not the end of the world, there are much worse things in life. He is my son though, my baby. I know how cruel kids (and some adults) can be when someone is different and I am worried for him. The pediatrician diagnosed him and they are working on an appointment with a dermatologist.

From what I have read online, usually there is an accident or illness or something emotionally tragic that triggers this auto immune disease but that doesn't apply to him. I read it can stay this way, come and go, get better or worse. He had itching for 3 weeks or so and they thought he had dandruff....then out of no where like overnight he had 2 bald spot...one round, the size of a nickel and the other a rectangle 1 inch by 1/2 inch.

Any experience with this would be so helpful. I just don't understand this disease and I don't even know what to tell my son. Although he is going to the dermatologist soon, I read that most of their treatments don't work and they can have severe side effects like the steroids. I don't know that I want to subject him to cortisone shots, especially if they aren't known to work. I have been studying essential oil treatment and I am sure I will get no where with the Dr on that. I want to do the best for him to give him a chance to get the hair back and not make it worse. HELP!

 

[SC Minnie]

My Mom has Alopecia Areata. She developed it about 15 years ago after taking care of both of her parents before their deaths-- her mother died first from a brain tumor then her father had alzheimers. She took care of him in her homd for 2 years. The doctors think the stress triggered it.

When she was first diagnosed she tried a few treatments and creams but nothing worked. From what I understand there are varying degrees of hair loss. She has no hair. No eyelashes, nothing. She wears a wig out in public but doesn't at home.

One thing that helped her in the beginning was meeting people with the same condition. There is/was a meeting once a year. She went for 2 or 3 years and met some great people. They had breakout sessions and 'groups' as well. She went back before internet forums and such. I am sure there are on line support groups that can help you as well. There were people there of all ages.

 

[clori]

Hi my dd12 has alopecia areata since 2.5. Check out Naaf, alopecia world, and children's alopecia project. Feel free to pm me.

 

[disneydee6]

My boyfriend has alopecia, and dealing with this is a journey. Not the end of the world, because it isn't exactly 'rare,' but he has told me that it takes some getting used to, especially when you try to hold onto hair that doesn't want to stay. In the years that I have known him, even though he's had it for almost 30 years, he slowly lost his eyebrows, and he was annoyed that he lost that hair too. Look into natural methods, I know he tried certain diets to help (can't remember what it was though...) and it varies person to person. Some just have a patch or two, or some, like my BF, have hair loss everywhere on their bodies. I agree that looking into groups (like the childrens alopecia project mentioned) would be an incredible help. Good luck!

 

[ols386]

DD had it when she was around 5 or 6.

It was just the left side of her head, and most of the hair fell out.

Took her to doctor.

Could not think of any dramatic event that she experienced to cause it (other than her Dad and I divorcing, but that had been about 3 years prior).

Doctor gave us a prescription for some kind of medicated shampoo, that we were to use every 3rd day. Cannot think of the name of it, but within a few very short weeks, it started to grow back. Never had an issue with it anytime later.

 

[Robbi]

A brother of one of my daughter's friends has Alopecia Areata. He went through high school as one of the most popular boys in school. He and his family were upset at diagnosis, of course. There was some teasing at first but then I guess because he made it no big deal and didn't react in a way that satisfied the jerks, they moved on too. He participated in clubs, sports, etc. and stayed involved.
Hugs to you because I know as a parent it hurts and makes you anxious anticipating the challenges he faces.

 

[cassandrap83]

My friend (female) was diagnosed with this when she was 27. Similar to your son, she started out with an itchy scalp, and that turned into clumps of hair in the drain - and eventually the loss of ALL hair on her body, including her eyelashes. She too, had no traumatic events or illnesses.

My advice is to get him a wig (or stay bald) and teach him about everything so that he can better explain.

 

[clori]

ok I'm on a real computer now and much easier to type. My dd has had aa for over 10 years now but never lost all of her hair. From 2.5 to 6ish she lost over 50% then it gradually grew back until close to 11. From 11 to 12ish she developed 4 big spots. She is now 12.5 and there is various signs of growth in all 4 spots. Some of her eyelashes and eyebrows have come and gone but never lost them all.

I have tried a few creams primarily eczema or psoriasis medication but nothing that would be painful such as cortisone shots. For the most part I've found that regardless of what we do/try nature just does what it wants. We know one girl who lost all the hair on her head and body and now has a full head of real hair and we know other people who lost there hair once and it never grew back in over a decade then started to grow. Basically the issue with alopecia is the unknowing, unpredictability and sometimes it seems like a roller coaster ride.

There are companies that will donate wigs/hair pieces free of charge to kids with alopecia such as locksforlove, childrenwithhairloss.us, and hairclub for children (part of hairclub for men) and some insurance companies pay towards wigs though you need to specify cranial hair prothesis not wig.

Depending on your sons age I would suggest finding out realistic options but also recognize that doing nothing is an acceptable option. At this point dd and I discuss options and I give her final say.

 

[mom2boys]

My 17 year old has Alopecia. He first got it about 3 years ago. Doctors said it was stress related - none of us, including him, can think of what that stressor might have been.
His hair returned in full about a year after it started. That lasted only a few months. The "spots" appeared again. Now after another year the spots appear to be filling in.
My son ended up shaving his head. It took some getting used to for me. But I kept reminding myself that it is just hair - he's still the same kid and he's healthy. He has a shaved head in his senior portrait. He actually likes it now. He was nick-named "Spot" and that stuck for a while. (His big brother started that one.) He didn't seem to mind and it didn't hurt that all the girls wanted to touch his shaved head. At first a couple of kids asked if he had cancer - apparently there was a rumor about that for a while. After 3 years the kids have figured out that he's not ill.
The biggest challenge now is adults who judge him - like his shaved head is some sort of statement against authority or indicative of his belief system.

The shaved head get him & his brother located within 5 minutes of a bolo at Hershey Park 2 years ago - 16 yr old with a bald head & a Redskins jersey - easy to find.

 

[Stacerita]

I know it's not the end of the world, there are much worse things in life. He is my son though, my baby. I know how cruel kids (and some adults) can be when someone is different and I am worried for him. The pediatrician diagnosed him and they are working on an appointment with a dermatologist.

From what I have read online, usually there is an accident or illness or something emotionally tragic that triggers this auto immune disease but that doesn't apply to him. I read it can stay this way, come and go, get better or worse. He had itching for 3 weeks or so and they thought he had dandruff....then out of no where like overnight he had 2 bald spot...one round, the size of a nickel and the other a rectangle 1 inch by 1/2 inch.

Any experience with this would be so helpful. I just don't understand this disease and I don't even know what to tell my son. Although he is going to the dermatologist soon, I read that most of their treatments don't work and they can have severe side effects like the steroids. I don't know that I want to subject him to cortisone shots, especially if they aren't known to work. I have been studying essential oil treatment and I am sure I will get no where with the Dr on that. I want to do the best for him to give him a chance to get the hair back and not make it worse. HELP!

I had it back in my early 20's. First noticed it when my eye lashes started falling out. Always was losing my hair so not sure how long it was actually going on. I have a lot of thick hair so it wasn't noticable at first. The eyelashes were hard to lose, eventually I lost them all, along with my eye brows. My hair thinned a lot because of it. Doctor said it was from stress. At that time there wasn't any treatment or anything to do, docs said it may or may not come back. Took a long while for things to get back to normal. My hair grew back just as it was before, so did my eyelashes. My eyebrows never did come back fully. Have some sparse and bald areas to this day. It was hard facing people when I didn't have eyebrows. But I did it. Did all I could to suck it up and not let it show that it bothered me. I was an adult at the time so it was a bit easier than being in high school. People stare and say things, but its usually because they don't know and it is different to see someone like that. Hopefully you son is strong to just let it roll off him and hopefully it doesn't last too long.

 

[MM27]

I have a student in my class that has alopecia and his doctor wrote him a note to allow him to wear a baseball cap at school. He keeps it on all day, which is usually not allowed. May not sound like a big deal, but he hasn't had one student question the cap and in the past had kids constantly asking about the bald spots.

 

[Minerva Mouse]

I have a friend who's daughter has alopecia and has since she was a baby. I do not in any way mean to sound inconsiderate or unsympathetic to anyone's plight. But, at least it's you DS and not your DD. My friends daughter typically wears a wig when it gets really bad, she even had a special one made for her from locks of love several years ago. If it were my son, I would probably just keep his hair cut really short, but if that's not your son's "style" I can see how that might effect his self esteem.

 

[bellebud]

I had it in my early 20's. I lost a silver dollar sized round patch right at the back top of my head. I wore my hair in a high ponytail for about a year to cover the area. I grew back. Then I found another round patch (silver dollar size) behind one of my ears. My long hair covered it, so I was very lucky.

Those were my only episodes.

You don't say how old your ds is. If he's youngish, and if he doesn't already, I'd try to just go w/ a crew cut as his regular hairstyle. Then the patches won't be so noticeable.

I know it's upsetting when something happens to one of our kids. I hope it's very minor and goes away.

 

[weeluvdisney]

Thank you for the support. It is tough because I just want the best for him and itis a strange disease that you don't hear much about. Bizarre that you can just lose hair from stress. I don't understand these auto immune disorders. By the way, he is 9 years old. We keep his hair quite short but it is still noticable and like I said, basically fell out over night and I didn't find the hair anywhere.

Has anyone tried herbal supplements such as adrenal support and colostrum which are good for alot of things but specifically auto immune diseases?

We talked to a very intelligent lady in a health food store that seemed to know alot about auto immune disorders and these herbal supplements.

Thank you so much Clori, I'll look at the info you provided.