Replies to This Discussion

Permalink Reply by Nick Barlulis on March 8, 2010 at 9:58pm

I'm sorry for you and your little boys pain. When I was five all my hair fell out (AU). I wore a wig in kindergarten and first grade. I felt very alone and isolated even at that young age. Kids can certainly be cruel. In second grade all of my hair grew back. I had one other episode as a child, in fourth grade I had a bald spot on top of my head. That cleared up after about six months and my condition went into remission for 35 years! Now as a 47 yoa male I am again AU. What a cruel disease, but I feel i am very lucky to have gone so long without an episode. My hope for you is that you and your son accept what has happened and try to move on. There is always hope and nobody knows what degree or turn the disease will take. I pray for you and your son and wish you peace.

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Permalink Reply by Seadra on March 8, 2010 at 10:32pm

Angie, as an Alopecian myself, the most important thing I have learned about this awful condition is that it cannot be controlled or predicted by modern medicine. I am forever thankful that after being diagnosed at a very young age my parents did not make me feel like there was anything wrong with me or that I was sick. They never forced treatment on me (I tried steroid creme a couple times and then stopped) As an adult my most valuable treatment is mental acceptance...You can feel a sense of relief that your son is perfectly healthy otherwise, and congratulations on your new baby to come! You are your son's support system which he will need as you navigate this together. Sounds like you are doing your job wonderfully already. Blessings to you!!

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Permalink Reply by jackie estrada on March 9, 2010 at 12:16am

Hi Angie! When I read your post it made me cry all over again :( My son Mikey is also 3. He got his 1st spot in oct and to date has polka dotted hair only in the back.We shaved his head on feb 8th :( I didnt get to much info from the dr either. Ive done all my research online. You have come to the rt place :) Ive only been a member for about a month and the support is great. I to worry about whats gonna happen with Mikey if we do decide to have him go to preschool. When Mikey sees me cry he comforts me and tells me not to cry that his big hair will come back :) he had long hair before this happened. Check out his photos on my page. No matter what they are beautiful. bald, polka dotted or not! Not sure if the sadness ever leaves. But u learn to cope and be grateful that your child is healthy and not losing his or her hair to a deadly disease. Although it doesnt seem fair, at times. But imagine how many parents would rather be in our shoes than in their own when their child is sick. Thats what helps me get through this. Although im happy one moment, i can do a whole turn around and feel like im dying because i cant make this go away. Like u said its the not knowing! Mikey does have some regrowth going on. Its white pokey hairs. But with alopecia you never know. Kids regrow just to lose all over again. Can I deal with it as a mom, Im not sure. I do know that it really does start growing i will let it grow and go through it all over again if it reoccurs. His daddy wants to keep him bald because he doesnt want to know the unknown. But although it will hurt the second time around if that should happen to us Ill leave it up to Mikey to decide if he wants his hair long or to keep it shaved. To date he hasnt lost his brows or lashes. I tell myself i dont know that i can handle that if it happens. But in reality will i have a choice. Whats made it hard to this point is the comments that we have heard :( after we shaved his head we went shopping and Mikey overheard someone say he was weird. The next day he asked me if he was weird, and i told him no not ever. And he told me ok cause he wasnt ready to be weird yet. This was the day i cried like i hadnt cried. Because somehow, someway someone had hurt my child and made him different! And like u, I always tell him I love him and that he is beautiful. He laughs and tells me he knows cause i always tell him. U will come across the person who will brighten ur day, I was shopping one day and Mikey didnt have caps yet and a woman was next to me and told me i had beautiful children it was Mikey and my princess Emma who is 2. This woman never mentioned his hair although it looked like he had a really bad hair cut. I truly felt blessed that day. Still makes me smile :D I hope ur pregnancy goes well. What a blessing. Tell Brayden we said HI!

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Permalink Reply by edie1122 on March 9, 2010 at 7:07am

Hi Angie,

My daughter has struggled with AA since age 5 on and off but her first patch was right before her 3rd birthday. After years of AU myself, this through me into a panic!....incredibly so, she has never freaked out. I think it helps her see me taking it in stride. Through the years, we have known of 3 other children in her school with AA/AU. I've gently asked her how other children have reacted. She says it's "not a big deal"....I also asked my 15 year old son about how he would feel if I posted about my AU on FACEBOOK. He said he thinks that's fine and that "kids today don't care about that stuff!" I was amazed. Obviously I don't think it's easy, but I do believe it's easier than we worry about. Haven't you always found that the fear of something is usually more frightening than the thing itself?...I think it's good to reassure your son that hair may come and go but that he will always be ok. And that though kids will notice something different about him, once he explains why he has lost a patch, they will understand. This may all SOUND like great advise...but I know how difficult it can be. Know that there are many of us who do understand.

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Permalink Reply by Suzi on March 9, 2010 at 11:02am

DearAngie,

I recommend that you contact dr. Rohit form India, he helped and cured many children with the same condition. I use this treatment also and I can tell you that he saved my hair.
If I didn't start with this treatment, my alopecija areata would progress to totalis.

Check result on his website - http://www.alopeciacure.com/result.php?list=37

My only regret is that I didn't start with this treatment sooner...

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Permalink Reply by Sandy on March 20, 2010 at 10:37pm

Hi Suzi,

I saw your comment about this Dr. Rohit. I have to say i am excited about what you said. Are you still useing this treatment. My daughter is 16 and was diognosed with AA back in september 2009. do you really recommend this. How fast did it work.

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Permalink Reply by Ji on April 22, 2010 at 1:44pm

Hi Suzi! I saw Dr Rohit's website and did not know if it was a hoax or not. Can I know more about your experience. How you found out about it? How did you purchase it? Who else you know who used it? How long have you used it for?... or anything else of relevence about it!
It would be greatly appreciated.

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Permalink Reply by Angie Simonet on March 9, 2010 at 1:31pm

Thank you all for your words of support and advice. It's so true that we all have our own battles of problems. I know it's just hair, I think I fret more about the experiences he will have to go through and I remember how cruel bully's in school can be. However my little guy has quite the personality and I think with the right support he will get through this. Brayden came up to me the other day and said "mommy every day is a gift". Now this is something I think we all have to remember. I'm so glad to have found this site to connect with others that are going through similar experiences.

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Permalink Reply by khalid khalil on March 9, 2010 at 3:22pm

As a person that went thru the same things that your son is gonna go thru, im gonna have to say it sucks. but in hind sight if it wasnt this it would of been something else. i've been picked on for being the foriegn kid the bald kid the quiet kid the loud kid the trouble maker the smart kid....really it doesnt matter how or what it is theres always something out there. so take my advice and dont instigate the situaton by covering it up; wigs and hats only draw attention and it makes the problem that much bigger. the most comforting thing I can tell you is that if he is bald for a day or his entire life what doesnt kill us makes us stronger. honestly (and this might sound like im blowing smoke) if I had a choice now to go back thru my life and be bald or not id choose bald...admittedly now that im grown I wouldn't object to a change, but being bald is what made me what I am today, it helped me build the self esteem I have today, the wit I had to develop as a kid to defend myself, my apathy to the jerks in the world, and my sense of empathy for those that are unfortunate. im not saying im a perfect person but being bald gave me perspective and helped shape me into a good person. so look at the good that this is going to do for your son and remember in the end its just hair...

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Permalink Reply by Steve Turner on March 10, 2010 at 7:53am

I myself lived through what your son is going through. It's not easy. Kids are cruel. Either because they don't understand, or because of their upbringing. In my 22 years of dealing with this, most Doctors can't even say it much less tell you what the cause is. I think it is important that you educate yourself and your son. Teach him to speak openly and honestly about it. This is a way of calmly defusing bad situations if there is any chance of that. You should teach him to be proud! One of my favorite lines as a child was this:"God made only a few perfect heads and covered the rest with hair." I would advise against using a wig. My parents put one on me when I was 5 and the teasing ramped up 100 fold. The kids (especially the girls) would take my wig, and play with it as though it was a ball or something. I was a hell of an athlete in high school, but in my first basketball game, you guessed it, came right off. I was humiliated to the point that I quit playing sports, and I regret that to this day. The day I decided to lose the wig was the day I regained my sanity!! You just encourage your son, and he will become a bright, spirited young man who will make you proud! You can also tell him that we all are pulling for him!!

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Permalink Reply by Laura Liedel on March 10, 2010 at 1:13pm

I am also new to this site. My 2 year old grandaughter was diagnosed in January. I understand your grief becasue I am also having a very hard time dealing with her condition. We need to stay strong for the children. Iwould suggest that you educate his school about his condition before he even begins ad hope that the teacher will educate the class.

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Permalink Reply by Amber on March 23, 2010 at 12:18am

I am sorry to hear this. I also lost my hair when I was 3 and I am now 19 and have none what so ever. I am thankful I lost it at a young age though. It was easier to grow up with it and people got used to it. all throughout school I wore hats of different kinds. Then when I entered High School I got my first wig. It was sure a change. I wear one still and have even had hair stylists ask me where I get my hair cut and styled...so i am guessing it looks pretty natural. But growing up with Alopecia has helped make me the person I am today. I have learned who true friends are and also to not try and act like someone I am not. I am my own person and if someone cannot accept me for me as a whole including my alopecia then they are hitting the road. I do not look at alopecia as something that keeps me down. Hair is not everything at hey none of my friends can take off their hair anytime they want to. Yes sometimes I do think why me but why waste time being sad, depressed, or mad. Be happy and live life because you only live once.

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