Kind of lost

HI...
I'm mom to Olivia who will be three in a few weeks and she was just diagnosed this week. Needless to say we're a bit lost. Nobody but me will brush her hair because nobody wants to be responsible for her hair falling out as if not brushing will stop it. My husband wants to put her in a plastic bubble and well.....I don't know where to start to figure this out.

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Permalink Reply by Sybil on May 27, 2009 at 7:35am
Barbara,

I don't know what to say...I gather you are where we were..the WTF? stage. WHAT ELSE??
I am sorry. I don't know enough about this to know if allergies attributed. I know that asthma can coincide.
Have you tried nutritionists for the allergies? I don't want to seem uneducated. I know that some allergies can be controlled with diet and some are additives. Have you tried Organic?
I would prepare her for more to fall out.
Check with...oh, what is her name...Rose Marie. She lives in NZ and works with the FREEDOM WIGS for her daughter.
We aren't ready for a wig and I doubt Miss O would keep it on her head if we could find one small enough. Give your daughter options. Let her decide what to do. Let her have the control over something that can't be controlled..
Also...contact Lori Ann Butler here..she wrote a book that I haven't read yet..When you're hair falls out keep dancing

Sybil
Permalink Reply by Alyssa (barbara-mom) on May 27, 2009 at 8:45am
Hi Sybil,
Thanks for the information. I cannot figure out how one mentally deals with this yet. I will continue to research and
talk to people to better understand our options. Your daughter is adorable, let's hope that in our girls' lifetime a cure will be found.
Barbara
Permalink Reply by Lillian (Tracy-mom) on June 1, 2009 at 12:35pm
Barbara,
Did you have a post of Keratin.com as well? I tried to send a reply and it didn't go through. I'm Tracy and my daughter Lillian is also 8 with allergy, asthma, and AA. She was diagnosed 6 weeks ago.

Tracy
Permalink Reply by Sybil on June 1, 2009 at 5:54pm
It's funny...I have read that allergies and asthma can go hand in hand with alopecia but Olivia doesn't have either..
Permalink Reply by Alyssa (barbara-mom) on June 1, 2009 at 7:59pm
Hey Tracy,
I sent you a response on Keratin. Yes, it is the same Barbara. The more info we can find the better we all are!!
Permalink Reply by Sybil on May 27, 2009 at 7:26am
I was talking to the mom of the girl in our church and she said it's much harder on the parents because there is nothing we can actually DO...except go from Dr to Dr and hope.
The kids seem to do much better. It's the OTHER kids you want to protect them from tho. Adults, we hope, are more educated and understanding but since the kids can be cruel we want to do everything to protect from them.
Yes, older kids understand this..should we be dealing with this again in a few years I will have to sit down and have a chat with Olivia and see what she wants to do.
Thank you so much for your suggestions...
I'll be talking to the Dermatologist next week
S

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