xnaivetex (xnaivetex) wrote in plagiocephaly,
xnaivetex
xnaivetex
plagiocephaly

Community is up and running now :) The top graphic will soon change colors to better match the color scheme of the layout, and a few promotional banners will be made to help spread the word, but that can be done later; the bulk of it is finished. Feel free to fill out the applications that can be found on the community info page! I guess I'll be the first one to start.


BASICS

Name/Nickname: Cristi
Age: 21
Gender: Female
Location: Alberta, Canada

ABOUT YOU:
# of Children: 1 boy, 19 months old
Are you Planning on Any More?: I'd like 2 more, but I'm not planning on having another for 3-4 years.
What are Your Hobbies? Websites, going to the park, listening to music, reading good books.
What Do You Do? Work/SAH/School? I work in pipeline engineering for a Canadian Oil&Gas company.
Do You Have Any Pets? I have 2 cats, Mickey and Cuddles

EXPERIENCES
Do You Feel That Your Health Care System Made Enough of an Attempt at Awarness Regarding These Issues? No. Not at all. I've been working alone to distribute information and pamphlets across the Canadian Health System to try and get them added to the post partum take home packages. I had one tiny piece of paper with head shape on it, but it didn't come with any real important information on prevention, repositioning, etc. I was quite disappointed.
Are You Here for Opinions On Whether or Not to Get it Checked Out? No
Has Your Child Been Diagnosed? With What? Yes, Positional Plagio
If so, When Did Your Child Get Diagnosed, and What Stage Are You At? Graduated
Have You Tried Repositioning? Yes
Was Repositioning Successful For You? No
So Then, What's Your Story? My son was diagnosed with positional plagio when he was 4 months old. I tried repo'ing for 4 months but it was just getting worse, no matter how aggressive I was. It was starting to malform and turn from plagio to brachy, so I took him back in. The doctor gave me a referral to a neurologist, who said I was just in time. He was 8 months old when he first got his DOCband, and luckily we saw amazing improvement in the shape; he graduated from the helmet when he was 12 months old.
What Is or Has Been Your Biggest Difficulty With Everything? The stares I got when I took my son out kind of bothered me. My family doctor as well kept trying to think he was qualified to diagnose it, despite my repeated arguments to give me a referral. It took about 2 weeks until I threatened to go to a new doctor if he didn't, so I got the referral. (I still switched doctors after, anyways)
What Is or Has Been Your Biggest Triumph? Just getting it done, and gaining the knowledge to advocate awareness wherever I go. I constantly leave brochures at doctor's offices, hospitals, play groups, etc. My biggest triumph is my son, and the fact that I know I did everything I could to get it done.
How Have People Around You Reacted? Family/friends/strangers/doctors/etc? People were kind of rude. I'd hear whispers, like "what did she DO to that poor baby that he has to wear a helmet?", and people outright asking me if I dropped him. My friends and family, even my husband, didn't think it was necessary and I took a lot of flack from everyone. They thought I was overreacting, even though I had the doctor on my side. They all realized how great it was that I did it though, when it was all done and over with and I showed them before and after pictures of his progress.
Do You Have Any Tips to Share With the Group? Yes. If you child is in a helmet, do not let them get accustomed to head butting things ;) My son headbutted EVERYTHING when he was in his helmet, and boy, he got a rude awakening when that helmet was off. He still does it from time to time!

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BASICS

Name/Nickname:Mei
Age:27
Gender:Female
Location:Colorado

ABOUT YOU:
# of Children: 3 (2 DSDs and 1 DD)
Are you Planning on Any More?: no
What are Your Hobbies? reading, being online :p
What Do You Do? Work/SAH/School? Work Full Time
Do You Have Any Pets? 1 dog: Saint Cornelius

EXPERIENCES
Do You Feel That Your Health Care System Made Enough of an Attempt at Awarness Regarding These Issues? NO
Are You Here for Opinions On Whether or Not to Get it Checked Out? no
Has Your Child Been Diagnosed? With What? not officially
If so, When Did Your Child Get Diagnosed, and What Stage Are You At? n/a
Have You Tried Repositioning? yes
Was Repositioning Successful For You? no
So Then, What's Your Story? i noticed my DD's head was becoming misshapen. talked with her pediatrician and she gave me a referral to a pediatric neurosurgeon. our appointment is in 20 days.
What Is or Has Been Your Biggest Difficulty With Everything? people not believing that this was anything to worry about.
What Is or Has Been Your Biggest Triumph? getting someone to believe me!!!
How Have People Around You Reacted? Family/friends/strangers/doctors/etc? not too terribly, but we'll see. if she has to wear a helmet, i'm sure reactions will change.
Do You Have Any Tips to Share With the Group? i joined in order to get some tips for myself :)


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