I hope we're not too late!

[Guest guest]

Hi

I've been reading the files for this group, and have some hope that I

can get some successful treatment for my daughter, who will turn 1

year old on Sept 20 (that will be 10.5 months corrected, if that

gains

us any time).

Here are pictures of my twins:

http://home.earthlink.net/~ladelfe/Twins/index.html

The photo of my daughter is almost fully face on, but you'll notice

her right ear is barely visable. I don't have a picture of her from

the top down right now, but her right ear is distinctly back from the

left, and her forehead and cheek show similar differences. She was

my

" A " twin, and was head down and squashed by her bigger brother for

most of my pregnancy. The were born at 33 weeks, forceps delivery.

Her head was out of shape when she was born, but I was repeatedly

told

to reposition her (difficult because of tight neck muscles, but she

was never diagnosed officially with a muscular problem), and that it

would get better. I even made a special appointment at 5 months,

concerned that we were losing the chance to correct the shape, but

the

doctor dismissed my concern, saying she had seen 3 babies for head

shape that day and my daughter's was the least out of shape. I let

myself be reasured by the doctor and didn't think much more about her

head shape until last month when I re-met an old acquaintance whose

now-4-year-old was born with facial and scull malformations, and who

has been going through a lot of medical intervention. In passing I

made some comment about the only problem my daughter will have is

different length ear-pieces when she is fitted for glasses some day.

Robyn was not amused, and pointed out possible jaw problems in the

future, among other things. That made me wonder if the problems I am

already having getting her to take solid foods might be related to

her

current jaw position (okay, maybe not); and if her chronic ear-aches,

which do NOT appear to be caused by infection, are related. Her

pediatrician is still telling me I'm a silly worried parent, and

everything is fine.

For the last month, I have made a few efforts to get a second opinion

with another pediatrician (they said see a neurologist), with a

pediatric neurologist (he said he doesn't deal with plagiocephaly, so

call the university hospital in Albuquerque), and so on. She has an

appointment with a pediatric dentist tomorrow, to get his opinion on

the jaw question (interestingly, the dentist has 2 year old twins).

I'm still playing phone tag with the university pediatric center.

ly, though, I thought I had left it too late to do much, so I

haven't been as persistant as I could have been. Today, though, I

read an article about DOC-banding success in older children, and I'm

thinking it may still work! My next problem is finding a doctor who

can help, or who has worked with banding and who agrees that my

daughter doesn't need it.

So, does anyone here know of a doctor in New Mexico (Santa Fe,

preferably, Albuquerque okay) who consults on plagiocephaly?

Of course, my next problem would then be my insurance company, but

first things first....

, mom to and (b. 9/20/2001)