I've been MIA for a while!

[Guest guest]

We had a death in the family recently and that, of course, took

precedence over every thing else. But I am back and have read a lot

of what I've missed (or at least I tried) Anyway, thanks to all who

responded to my earlier concerns. You guys are great! We are still

trying to find a ped who will write the prescription for us. I am

stressing as is only getting older (he's now 9 1/2 months)

I also have what I consider a sad story to tell. When first

started attending day care, there was a little girl there named

who I always knew something was wrong with. I didn't know what until

I started researching plagio - and she's got it BAD. She just looks

messed up. I orginally thought maybe she was slightly retarded or

something (please don't take this offensively - I am just trying to

describe how she looks) Well, its just plagio (luckily). I talked

to her mom about it a couple weeks ago ( just turned 1) and gave

her the web sites I've discovered. I encouraged her to do more than

wait it out (her dr assures her it will round out and she says it has

some - I haven't noticed a difference and it has been 6 months since

started there) I have posted her response below. I know I

can't force her to do anything, but I just keep thinking - " this poor

little girl, she is so cute but is going to get such a bad rap

because of her head " Her response:

" I did quite a bit of reading on the subject of plagiocephaly and

talked about it with my husband and various medical professionals.

We were able to ascertain quickly that isn't suffering any

developmental or cognitive problems because of her head shape. That

was our primary concern. She's slow to get mobile, but she comes by

that honestly. My husband and his siblings were all slow to walk (16-

18 months). And she's a smart little cookie, beginning to talk,

etc. So after eliminating that concern we knew we were looking at a

purely cosmetic issue. We like and trust our pediatrician very much

and we've asked him about her head at nearly every visit and have

been assured that it will be okay. Perfect? No. But hardly anyone

has a nice, round head with perfectly even ears, etc. We called two

other pediatricians for opinions and were told the same thing. (Both

of these peds are family friends.)

Her head DOES look better than it did and I expect it will keep

improving for a while yet. Will her ears probably remain a bit

crooked? Yup, I imagine so. Mine are crooked. One is about a 1/2

inch higher and slightly farther back than the other. In 34 years

not one single person has ever noticed it. Even when I point it out

people don't really " see " it. Heck, people don't even notice 's

ears NOW unless we point it out.

One of the studies I came across on the web was done by a physician

who researched plagiocephaly in adults. He found that in 1000

adults, greater than 14% of them had at least some of the discernable

after-effects of it-- flat spots, crooked ears, a slight bulge to

their forehead. Not a single one of them were even AWARE of it and

none of them had ever had anyone else point it out to them.

I've got to tell you, after speaking with you I've really studied

, (I still visit at lunchtime most days) and I can barely see

anything " off " about his head or ears. And I've looked hard! :-) I

don't say that to change your mind but rather to perhaps ease it a

bit. We mothers all have our things that we get very concerned about-

- for me it's rBGH and antibiotics in dairy products. only has

organic milk, yogurt, etc. now that she's old enough for dairy. I

respect your right and need to do what you think is best for

and I wish you the best of luck with it! "

I just can't believe she would let it go so easily. I know is

nowhere near as bad as her little girl, that's probably why she

doesn't see his plagio. I'll tell you what, if was my little

girl, I'd have her in a helmet. As it is, I am still struggling with

the decision to band -=especially since we can't find a Dr. to

sign off on it. Sorry to be so long winded, I just needed to vent.

Kristi

(4) and (9 1/2 mos)

OH

[Guest guest]

Kristi,

I can't believe you have had such bad luck getting an RX. Can you see a

specialist for an RX? The DOCband webpage has a list of band friendly doctors.

You might find one in your area on that page that will write the RX. There is

also a list of band friendly docs listed at www.plagiocephaly.org.

I was sorry to hear about and her moms outlook. Of course, everyone has

their own feelings and thoughts and they do what they feel is best for their

family. Still......

Best of wishes and good luck getting that RX!!!

Marci (Mom to )

Oklahoma