Shannon **Jose's Mommy**
  • Female
  • Philadelphia, PA
  • United States

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Shannon **Jose's Mommy**'s Discussions

Anyone wanna help out with my questions?

Started this discussion. Last reply by Jen Deletto Jul 8, 2010. 15 Replies

Hello,My 2 year old son went to the Derm doctor and they want me to try this lotion called Triamcinolone Acetonide Lotion..I would like to know if anyone else tried it and if it worked? I get very…Continue

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My Son Has Alopecia (AA)..He is only 2
Do you have alopecia?
Parent or guardian of child with alopecia
Are you age 18 or older?
Yes - I am 18 or older

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Don't stare or tell me he looks funny!

Posted on April 27, 2010 at 5:08pm 6 Comments

hey everyone,

i need to get this off my chest since i have no one else to talk to. Im so sick and tired of people staring at my son...people come up to me and say wow does he have cancer!...i think thats so rude..and then today i took his meds to rite aid and someone says he looks funny bald...i dont even know what to say back to breaks my heart when people just stare...if you wanna know what my son has please just ask...

Then yesterday im looking back at my wedding…

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At 6:46pm on September 19, 2010, Evelyn (Amanda's Mom) said…
Hi Shannon, my daughter Amanda also complained about her scalp hurting, especially when I tried brushing her hair. I noticed that she also scratches her head more than usually. Her hair has fallen out alot in the last 6-8 weeks. I asked her dermatologist she said it wasn't related to AA. I think it is. We as mothers know our kids and if there is somthing different going on, we know. I do believe the scalp pain and iching is related to her AA.
At 2:08am on July 25, 2010, jackie estrada said…
Hey Shannon I havent been on in quite awhile, but how is Jose doing? How are you doing? I know wearing the shoes we wear is sometimes difficult! We're doing really good! Mikey is showing more hair growth! its black in some areas and white in others! but at this point who cares! Stay strong! Are you trying anything or letting it run its course?
At 8:36am on July 23, 2010, George Ortiz said…
please read my blog on weak immune systems cause and fungal /bacterial infections cause AA its newly posted
At 2:34am on April 15, 2010, Susan - Jon's Mum said…
I love your photos. Your children are gorgeous.
I agree with what Justine has said about how you deal with AA. Accepting them for who they are is important and not making an issue of it.
How are you going?
At 6:02pm on April 14, 2010, Justine said…
Hi Shannon,

What a cute little boy and beautiful daughter! It's been awhile since I've been on here. I guess that's a really good thing, because everything is going well with my daughter. We fully accept who she is as a bald girl and she has fully accepted it as well (sometimes almost too well). There are times when she says things that aren't very nice about other kids ( like a dwarf girl that lives in our town) and I'm completely embarassed because I think she of all people shouldn't be poking fun. It's kind of ridiculous that I shoud be telling her that she shouldn't be making fun of people.
It's great that you live in PA, because The Children's Alopecia Project is absolutely fantastic. We live in MA, but we try to make it down to PA once or twice a year to go to events. We attended the Alopeciapalooza last August in Philly and we'll definitely be going again this year. My daughter loves to see her "bald" friends! We started by taking her to a NAAF conference when she was two, but it didn't really offer much for two year olds. Children's Alopecia Project is just for kids and all about raising self esteem in children with alopecia. They are absolutely fantastic!
My best advice is to deal with your son's alopecia as if it's no big deal, because it really isn't. If you don't think it's a big deal, he won't feel it's a big deal.
At 1:01am on April 14, 2010, Susan - Jon's Mum said…
Hi Shannon
Welcome to AW
So glad that you could join us here. Hope you enjoy the support that others offer here.
At 11:18pm on April 13, 2010, Cheryl, Co-founder said…
Hi Shannon, I wanted to welcome you to Alopecia World. I can honestly say that we are a great community here and I hope you enjoy the time you spend with us.

At 6:00pm on April 13, 2010, Ellie said…
Hi Shannon,
Try not to blame yourself. My daughter was 2 1/2 when she started to lose her hair. At 3 1/2 she was totallyt bald. She had a full head of hair when she was 3 then she lost it all. It was very hard for me to cope with as well. I felt so helpless because there was nothing I could do to make it better. I found Children's Alopecia Project and they were and continue to be a great help to my daughter and me. My daughter is healthy and happy. She knows that she is different in the special kid of way. She is now 5 and she wears scarves, hats, a wig or nothing at all. She is more outgoing than her twin brother (he doesn't have Alopecia) I still have moments that I feel bad that I can't braid my daught's hair. but you know what. I don't have to worry if she has lice. Alopeciapalooza was great last year. We are going again.My daughter got so much out of it. She even identified with a new little boy at school that has AA as well. It will get better,
At 10:55am on April 13, 2010, Kari M said…
Hi Shannon . . .

I truly think alopecia is harder on the parents than the child . . . my alopecia has made me stronger, less concerned about "fitting in." When I was growing up (and had hair), I was painfully shy. Now, I am just as likely to go out with a naked head as I am a scarf/hat . . . and I haven't worn wigs for over a decade. I LIKE the attention, and I LIKE that everyone knows who I am.

The thing to keep in mind is how you act around your son . . . does he know you are upset and worried? They are like little antennae . . . they KNOW. The calmer and more relaxed you can be about it, the better he will be able to deal with it.

We as parents tend to put ourselves in our children's shoes ("if I lost my hair I would be devastated etc"), but it's not always the case. You are going to be your son's biggest asset. How you act will pave the way for him.

My youngest son has absolutely HUGE ears. Some kids were making fun of him one day, and so I told him that I thought he had the most beautiful ears in the whole world. So a couple months later, he came home form Kindergarten and announced that Kaitlin was in love with him. When I asked him why she was in love with him, he thought for a minute and said "because I have beautiful ears and a cute butt."

You have the power to make this easier for your son . . . let me know if you want to talk or if I can help you.

And no, I wouldn't change the way I am for the world. I have been without hair for over 15 years . . .
At 10:00am on April 13, 2010, Cindy (Duncan's Mom) said…
Shannon, My little boy developed AA at 18 months. He is completely bald and has a beautiful little head. God has given him "an extra dose" of personality. He has done fine. I think it was harder on me than him. I think the younger they are, the easier it is for them to cope. I think education is key. Find as much support and resources as you can. For me my moment of this is okay was when I was in the airport right after we found out what was going on with Duncan. I saw this beautiful little boy with long eye lashes (Duncan lost these too) and beautiful, full, curly brown hair. I had that envious feeling come over me and thought "why can't my baby have hair like that?" The little boy then sat down and I saw that he had an artifical limb! I thanked God then for Duncan's health and the reminder that it is only hair -- God will give him the strength to overcome. Duncan is now in kindergarten and doing fine. It does bother him at times when people stare, but we are doing all we can to help him understand why and make sure that he is reminder that he is beautifully and wonderfully made! I now can't imagine him with hair -- I love cuddling up next to him and kissing his head and neck! Hang in there and I will say a prayer for you. But remember the feelings you are dealing with are very normal you will work through all the emotions and be your little guys biggest supporter!


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