Re: new to list - from raleigh, nc

[Guest guest]

theresa,

thanks for sharing Jessie and your experience with me. i've been

thinking that it's a such a shame we have to educate ourselves - and

often only after a problem has arisen. my husband and I took a

" newborn basic care " class at the hospital (which we had to pay for!)

before emma was born. the instructor stressed the importance of

placing the baby on its back to sleep. too bad we weren't also warned

about plagio at that time. it seems as if the " back to sleep " campaign

should include ALL the information, not just the SIDS statistics! of

course, i know emma's situation was most likely the result of her

torticollis - still if i had been educated, i might have been able to

prevent the plagio. i think i'm going to write a letter to the

hospital asking them to include info on plagio when they teach that

class. and maybe some other moms won't have to go through this.

i'm anxious about our appt. with the neurosurgeon on wednesday. i

didn't wait for a referral from our pediatrician - i just went ahead

and made an appointment. which is a good thing, since i made it 6

weeks ago. i'm hoping he'll prescribe the doc band - i've been reading

such good things about it.

thanks again to everyone for all their great advice!

amy

mom to emma (born 9/24/01)

> Amy, Your little Emma sounds just like our little Jessie. Jessie is

> completely flat on the right side and her right ear is a lot more

forward

> than her left ear. Her forhead and cheek are more protrusive on the

right

> side. I diagnosed her plagio @ 10.5 mos. after being told at the 6

mo. and

> 9mo. mo. checkups that everything was fine and it would round out on

its own.

> Plagio was never mentioned :0( After I realized what Jessie had, I

told my

> ped I wanted a referral. The neurosurgeon we were referred to sent

us to a

> physical therapist for evaluation and treatment. The RX for Jessie

to be

> evaluated and treated with the DOC band came from my ped. although

we were

> told later that in order for insurance to cover the DOC band, the

diagnosis

> has to come from a neurologist, a neurosurgeon or a plastic surgeon.

Jessie

> was evaluated by the physical therapist as being severe (21 mm.

> assymetrical). We were also told Jessie had torticollis but had

pretty much

> worked it out on her own by now. Now that I have educated myself

about tort,

> I know looking back at pictures and remembering her poor range of

motion and

> how it was always more comfortable for her to look right, that she

definitely

> had it from early on. You had stated that you felt angry because you

could

> have prevented the plagio if someone had warned you about it when

Emma was

> diagnosed with tort. I know how you feel. It is so sad that

something so

> preventable was not brought to your attention. I was angry too that

I had

> done nothing to prevent Jessie's plagio either, but how can one do

something

> when they have no info from the very doctor's they trust to provide

that

> info? Our Jessie was never even diagnosed with tort. It makes me

sick to

> think how preventable all of this was. I feel like I paid my ped for

faulty

> physical exams. But the good news is that we're doing something now

and

> that's what's important. Jessie has been in her DOC band since 11

mos. and

> she just celebrated her 1st b-day on March 16th. She is getting

CranioSacral

> therapy from the PT as well. I hope this info is helpful. I will

keep you and

> Emma in my prayers. Theresa, Jessie's mom