Hi Connie,
Welcome to Alopecia World.

Jeffrey

Hi Connie,

I know what you mean. But here we are.
I hope your son is just going through a phase right now and will get back on track with his grades.
Has he got to meet anyone with alopecia yet? I know meeting others like myself made a huge diffrence.

Jeffrey

Hi Connie,

I guess you just have to give your son some time.
Have you heard about the NAAF Conferences? Alot of people go and dont want to really participate in anything at first... But then once they get there it's a life changing experience. Check out www.naaf.org

Jeff

I hope you get the colitis sorted out. I have a friend with Chrones disease.
I think their is a naaf support group in Santa Ana. Maybe you could start a new one thru NAAF.

Good luck with everything.

Jeffrey

Hi Connie. I am new to alopecia world. I have a 14 year old son who has alopecia. He is in 8th grade. Thought maybe we could be friends ;)

Brandon is hanging in there. Basically in December all his scalp hair came out - to the point we had to shave it the rest of the way off. That was awlful. There was many tears from him as well as me and my husband - he would come to me asking why - I had no answers and felt completely helpless as a parent. Your children come to you for help and I think he wanted me to fix this and I couldn't. :( He is doing better now then at first - but doesn't like to talk about it.

Hi Connie - Wondering how Chris is doing? I told Brandon that I had been online and met someone who had a 15 year old with alopecia. He didn't seem as happy about it as I did. I think meeting others would help him but he looks at me like I'm crazy. Hope to hear from you soon.

I wish you 2 were able to go to the conference. I am excited about it - but a bit nervous too. We decided to go a couple months ago. We really didn't give Brandon a choice, we just said we are going. I have told him if he doesnt like it we will never go again. I talked to the NAAF and they said there are usually @ 20 in his age group (14-17). I just am really hoping some boys will be there too. He will be pretty upset if he walks into a room full of girls. :)
Brandon has white hairs on his head and he shaves them off every 1 -2 weeks, His eyebrows are white too. He barely has any hair on his body, But he doesn't think he has totalis.

I meant universalis.

We will pray for Chris! It does sound like he is struggling - it hurt my heart to think of him not getting in the water and getting up early to dress before his tent-mate! Have you thought about having him talk to someone? Someone from church? Brandon went through a real bad phase when the hair first came out (Dec/Jan). He didn't want to go to school,wanted me to home school, and was hesitant going anywhere. I honestly contemplated pulling him out of school. I sent emails, called the school, and went in with him to talk to the principal the first day back. I have been like a mother bear - ready to deflect or answer any questions that come his way.
He had a few issues - was teased a bit at first. He asked Mark (my husband) and I if it was okay to hit someone. ummm...no. He did end up kinda tackling a boy (however it was at wrestling practice and it was fellow wrestler) and the boy never bothered him again and they are friends. School has been fine since - but next year is high school.... He hates when people stare at him or an innocent child says "Daddy that boy has no hair" or someone says "So you lost the bet, huh?"
And he hates that I want to talk about it. Any time I bring it up -he says I don't like to talk about that. Whenever I say the word alopecia I get a look. I really don't bring it up much -for that very reason _ but I feel like I need to reach out every once in awhile and see if he's okay. Does that make sense?

Hey Connie,

I can't help but by being nosy. I was going through your profile and read about how Chris was wearing a hat all the time during a church camp and got up early just change before everyonelse does. I've gone through that experience, and I dont ever want to be in that situation or experience again. At his age, is very very tough, I was pretty much like Chris- a hat all the time, locking myself in the room with my musics on after school, and then my relationship with my parents werent good. So I just kept all the terrible things happened at school to myself, all the teasing and what not...just make sure Chris knows that he's not alone. I'm sure you're doing a great job!

Hi Connie, thanks for your add. It is the situation that Connie was having that makes me really angry at alopecia. I was really angry at alopecia back then and dont want anything except that I just want to be left alone. I wasnt happy back then when my parents kept saying that I should go out and socialize more often, just want to be left alone. If my relationship with them were better, I wish they could be more supportive of my choice and decisions instead of making them for me. They wanted me to try different kind of treatments, looking for wigs...etc.

At last, I had a huge argument (sort of tantrum) that I dont want any more treatment and I dont want any wigs. I just stick to my baseball cap, whenever I'm out. My elder sisters took me for vacation in a resort island, I didnt went into the waters because I would have to remove my har, I even had my baseball cap on my head so tight, during a speed boat ride, so that it would not blew off. That I had a pressure line around my head for a day or two...That was my life (cannot regret about it because it was not my decision). It just pissed me off when another person like Connie has to go through it. I think I should wirte a blog about feeling angry now at alopecia. Thanks again.

Tks Connie, sorry for mixing up the names earlier. You're dealing with alopecia too & I want to say that you're doing the best for Chris, you need to know that. As for my studies, alopecia wasn't enough to eliminate my love for animals & my aspiration to be a veterinarian, this could be that I only deal with alopecia when I'm about to finish high school while Chris still has a couple of years left before he needs to decide what subject he's going to do in college. How about friends? any friends/siblings/cousin around his age that he can talk to? He needs to talk to someone about his school. You need to know what is distracting him from his studies...perhaps something particular, not necessarily alopecia in general term.

Have you noticed that his study behavior/ performance changed dramatically when his alopecia started? If it is, that it could be correlated. Social perception and acceptance among peers are most crucial in a teenage life, in addition that he has to deal with alopecia or even a girl. He definitely needs to talk to someone, I can imagine so many things are going through his mind now and of course its not the coolest to tell your parents what you're going through in your mind during teens. Talking to someone that he has great respect for would be good for the time being. He just need to know that Aloepcia World exists but not necceassarily that he needs to talk to us.

Thanks for your comment and e-mail. I will keep Chris in my prayers, he will be fine, kids with alopecia like him are very courages, a heart made of gold and a will made of steel. Do keep us updated about him, appreciate that. God bless.

Hi Connie,

Stopped in to say hello. Hope all is well with you & Chris.

Jeffrey

Hi Connie,

Yes it was nice to have an extra day off.
Good news about the regrowth. I hope it keeps growing in.
The dogs should help alot. Mans Best Friend.
Fingers crossed.

Jeffrey

Hi Connie,
I just want to say hi and tell you that I think it is great that you are so supportive of your son! Having developed alopecia myself at the age of 14, I know how difficult the high school years can be trying to deal with hair loss. Chris looks so well-adjusted and happy in his pictures! He is a handsome young man with or without hair! He seems to be pretty open about it, which is great, because I found that when I told my friends in high school, they were fine with it! And once I told people, it felt like a million pounds lifted off my shoulders! Anyway, I am rambiling on and on.....but I just wanted to say that your son seems like a strong guy with a great attitude :) Feel free to ask me any questions!
-Natalie

Hi Connie! I'm glad to hear that Chris seems to be adjusting. You're right though - high school is a challenging enough time without having to deal with alopecia! Hopefully Chris has some good and accepting friends who don't care that he doesn't have hair. I bet though that he will make it through high school just fine and will probably come away from it feeling like a stronger person having dealt with alopecia at such a young age (I know that I certainly feel stronger!). Does he play any sports or participate in theater or band? I found that keeping busy always kept my spirits high. Hope you had a great weekend!
-Natalie

Yes. I am currently on the Immunotherapy path. I started taking Sulfasalazine and have had some positive results but I think I will end up having to take CellCept or Cyclosporin. I believe there will be a cure for Alopecia in the near future and it will involve treating the immune system.

My Colits is getting bad. I have had Alopecia all my life and with this Ulcerative Colitis kicking in when I got back from Iraq I am wondering if it is something I have been ingesting my whole life. They did some food allergy tests on me but I am not allergic to wheat so I am not sure if that rules out Gluten/Celiac. I am Lactose intolerant so maybe its the milk in my food products. I am going to ask my Dr. next time I see her if she can find out if that has anything to do with it.

Being susceptible to infections and viruses can be a bitter pill to swallow! I am certain you have done your research on this matter. I know that immunotherapy isnt a popular option due to the potential side affects but if you have a good, experienced specialist who knows how to administer the dosages and keeps a close eye on the bloodwork, some of the therapies can be very beneficial.

I think its cool that there is another person out there like me. I have been growing up with this condition for my whole life. I understand the issues he deals with on a daily basis at school...specifically as a teenager. I was able to rise above it so I am sure he will too. Now I am about to retire in 6 years from the military I wish nothing but the best for the young man. - Eric

Hi Connie,
Stopped in to say hello.
Hope all is well with You and Chris.

Jeffrey

Hi Connie,
I'm glad you had a nice Christmas.
I guess it takes us all awhile to feel comfortable in our own way.
Have you thought about attending NAAF with Chris this year in LA? There are lots of kids there of all ages. It might me good for him.
Have a Happy New Year!
Jeffrey

Hi Connie,
I hope you can make it.
Wishing you the best.
Jeffrey