Alopecia World
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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.
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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Replies to This Discussion
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Permalink Reply by BaldGirlsDoLunch.org on
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Hi Sybil -
It is very upsetting and challenging with a new diagnosis...and especially for fathers when the condition affects their daughters.
The absolutely best resource e for you to turn for immediate assistance, resources, to get your family adjusted to the changes all are going through, etc is with Jeff and Betsy Woytovich, the parents of young Madison. They are the founders and directors of Childrens Alopecia Project at childrensalopeciaproject.org
They will put you in touch with other parents of girls in your area. Their materials are colorful and attractive and good for you to have to share with friends, family and the school.
Undertanding what this is and very much what it isn't and educating others is an important step at the start of having a child with aa.
It will be OK....she may very well have a form of aa where her hair comes back.
Let us know how else we can help.
Thea
http://www.baldgirlsdolunch.org
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Permalink Reply by Rose Marie' on
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Hi
I just had a wee peck at your daughter. She is gorgeous - wow what fab eyes.
I also understand how you are feeling. I was the hair doer in our family when my daughter started to loose her hair. It's a terrible feeling and I'm sending you a big cyber hug to help you get through.
I think what Thea has recommended is really fabulous so please do contact CAP. It's a great organisation.
Just to reassure you a little, my daughter has had AA for the last six years. She is now 18 years old and is living a full and wonderful life like she should. Your daughter is going to be ok just as you are.
If I can ever be of any help. Just pop into my page and say hi
Rosy
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Permalink Reply by Sybil on
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I did see that site...I was trying to find my way around it. I saw that there is an Expo thing in August but I don't know if we are ready for that yet.
Yes, my sister said her facial structure and eyes would be great for any wig should she want that someday.
Right now it just sucks...
Thank you all for all your support. I'll be a regular here I am sure.
I was just noting to someone else that I think she's had this since infancy because she had a bald spot on the back of her head when she was a few months old and we thought it was from spending too much time in her car seat..but looking back I think it was just the beginning
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Hi Sybil-
Alopeciapalooza is driving distance for you ( or Amtrak to Philly) so you could consider going there yourself or with your husband and not bring your daughter. When parents feel less alone it helps everything. We can feel we're so different in struggling to accept and adapt to things outside our control. We feel we're challenged with something no one in our circle of friends and family can grasp. To them it's just hair...and undoubtedly you will hear " daughter is so beautiful no matter what".
To parents initially, it's a full menu of revolving helplessness, guilt and worries. It's normal to feel that other people just don't "get it". It's normal to have all those feelings and from day to day see them come and go and come again. I know you'll feel better about it as time goes on and quite possibly the extent of the AA could be quite limited which would be really nice. I also know that when parents get out front on the topic and make informative "lightness" of it, it allows everyone else to be relaxed about it, too. Don't be afraid to confide in the people closest to you, but keep in mind that they can feel overdosed on it, too. On the other hand, I can also honestly say that sometimes the best people to talk to in these situations might not be the people closest to us, but rather people a few degrees further removed emotionally.
Lastly, it also helps to flip the situation. Think of how you would feel about a friend's child if the parent said their child had just developed AA. You know that it would not change anything how you feel about the parent nor the child. That was a huge personal ah-hah moment for me in my own adaptation. When I realized that if a friend came to me and said she had some AA, I knew it would not change one iota of who I thought she was as a person. It was clear from that point on that my friends would not care if I had AA either. It helped me very much to keep things in perspective.
As parents, it's a lot to juggle emotionally and on practical and social matters, But most of the time, I hear parents saying that yes there are bumps in this road...but so has every phase of parenting. And dealing with AA makes them personally much stronger and tighter as a family.
If you can come down to Philly, I look forward to meeting you there.
Thea
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Permalink Reply by Ala on
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Hi Sybil.
My daughter was dignosed just 3 months ago, too. Just like Olivia, she a had a little spot when she was 7 months old, and i also think it was the beginning of her alopecia. But since it grew in few months i didn't even bother thinking about it. This time around, it's very different, it was pretty devastating to me, she lost most of her hair and a little of her eyebrows in a matter of 3 months. I have come a long way in terms of acceptance since finding this website. It has been extremely helpful to meet so many parents that go through the same thing. We decided on no treatment for my daughter, and i am happy to say that since a week ago she shows signs of regrowth. There is a lot of white fuzz with a few darker hairs, here and there. Still, i am trying to not get my hopes up too high, as this condition is very unpredictable. Please feel free to ask any questions.
All the best.
Ala.
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Oh Ala,
She is ADORABLE....I think I'm getting better with this tho I think if I just have a good cry I'll feel even better. She's in the tub right now and I had to wash her hair...AAAAAAAAAAAAAAARRRRRRRRRGH.
How old is your daughter?
Sybil
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My daughter is 5 years old now. I think a good cry would definetely help. I cried everyday for 2 months, i still cry very easily when i talk about it, but at the same time this experience has taught me so much. I am not as much of a perfectionist anymore, my vanity went out the window (i cut my hair really short, after having hair up to my waist my whole life). My daughter doesn't care yet what's happening, that's why i'm working on my feelings now about this so that i can help her later, when she starts caring. I've also done a lot of research about wigs and there are some amazing ones out there (like the Freedom wigs).
Hope it all gets better soon.
Ala.
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I need a safe place to cry. My husband is not good with tears and I can't break down at my mom's. It feels so selfish and what good would it do. I need my sister but she's up in Canada. She's dealing with her own stuff too..seems our lives mirror and she has been thru the wringer lately herself and I think that if we could just get together somewhere, have a good cry..we'd both feel better..and then we'd be ok..but I haven't found that safe place and she can't get down here right now and I can't get up there either.
One of these days.
I've never been a perfectionist..as long as I don't look like I've been dragged thru a hedge or Miss O either. I have no time for perfection..lol
I just want her to be happy with who she is and I have to find a way to do that..tho knowing her, she won't need any help
If you're on FB you can friend me and see the videos of Miss O..she is hysterical...we're also on Youtube..
just look up my last name in FB..schaffrath
I'm using the same profile pic
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Permalink Reply by Lillian (Tracy-mom) on
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My 8 year daughter was diagnosed with alopecia ariata last week. I was a wreck. After doing some research of the internet and realizing western medicine had nothing to offer, I walked into a health food store that I have used before when she had so many food allergies. They were very helpful and least for me. They gave me a drink of water with ionic magnesium which instantly calmed me down so that I could function. I've also been taking a stress tab supplement. Since I don't buy into this stuff usually I doubt its a placebo effect. I believe it has really helped me function.
I also picked up some stuff for my daughter. Time will tell whether it does anything to help. I'm really focusing on way to get her immune system balanced, so we are trying some holistic approaches as well as the steriod injection treatment for the hair loss. She was on medication for allergies, and asthma and was getting allergy shots but her allergist and I agreed to take her off everything possible, so I'm hoping that by "fixing" her immune disfunction will alliviate some of her other health issues. I see an ND (Doctor of Naturopathic Medicine) next week and hope to get some usefull treatment and hope
Tracy
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Oh Tracy,
I too rather take something natural than anything else unless it's something that I know requires antibiotics. I tried a natural remedy for a UTI and it WORKED!!
At Olivia's age I am leary to try things. I rather let nature take it's course for now.
We have another Dermatologist appt next month.
This is for my husband. If this is what makes him happy..fine..but I doubt there is anything new they can tell us
My brother brought us pictures of his friends daughter when she was O's age and lost all her hair. It grew back and never fell out again..we will see. I would never compare her to Olivia tho I hope for the best.
Good luck with your daughter and let me know what you are doing for her!
Sybil
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The things I'm trying are so that nature can take its course. After a lot of reading, I think the junk American's eat in the form of convenient food prevent our body from doing their job. I'm planning on doing an overhaul of the family eating habits and getting rid of most all packaged food. This I know will take years to undo the damage to all of us. I'm just trying to halt anymore hair loss. It is still spreading I think but it is slower. Does you daughters head itch? This itching concerns me because I feel like it may lead to more hair loss.
Tracy -
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Tracy,
I have read that it can itch or burn and she DOES scratch sometimes.but I won't stop her...it's going to fall out anyway.
My brother said he has looked at her head again and sees some new growth..thicker bits...just brush right now tho
I have tried to eat healthier but we all know how hard it is to get a 3 yr old to eat.... -
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