Re: I'm also new, and also confused (LONG, sorry!)

[Guest guest]

Lee Ann,

I just have a minute, so I'll address the Drs -

We were referred to Dr Byrd, but when I called I was told that Nurse

would see us, not Dr Byrd. Well, she runs the " helmet " clinic

and is the one that sees all the patients and writes the Rx, etc. I

was uncomfortable with NOT seeing a Dr so I called and called and

tried to get to see Dr Byrd directly. The front desk finally got

rid of my complaining by sending me through to 's phone and she

was there and spoke with me. That's just how that office runs the

helmet appts, is in control. But after talking with me she fit

us in within 2 weeks ( is GREAT!).

From what I hear, waiting until March is standard, all offices of

specialists are always booked. If you see a specialist that doesn't

promote helmet therapy, then you have to start over again with a

helmet friendly Dr.... so either bug the front desk for a fit in (say

you'll wait and wait in the lobby if necessary) or keep up that

repositioning and take the March appt.

I'd only go to one of the ones on CT's webpage.

Good Luck waiting or bugging....which ever you decide.

[Guest guest]

Hi LeeAnn:

Welcome to our group! You're lucky to have caught 's plagio

at a young age. Keep up with the repositioning - you say you think

you're seeing results but aren't sure - it is amazing how one day you

think his head looks better & the next you think it's not any better

at all!! Most of us plagio parents have done that. I suggest taking

pictures of his head from every angle, that way you can monitor any

changes that might be occuring. It's so hard for us to remember how

their head looked a week ago even!

It is very normal to have such a long wait to get into see a

specialist for plagio. It's very frustrating becuz like you said,

time is so important. Get on a cancelation list at the Drs office so

if there are any cancellations before 's appt. they will call

you to hopefully get you in sooner.

I believe there is a Cranial Technology clinic in the Dallas area - I

could be wrong, I don't have a list in front of me, but I do know

there is one in TX.. We have another member from TX whose son just

graduated from his DOCband - I hope she reads this & can give you

some help in your area (Barbara, Korben's mom).

As for your delivery causing 's plagio and/or tort, it could

play a factor in it, but it's so hard to tell. My daughter's plagio

began in utero which is a common cause.

Welcome again, we're happy you've joined our group. Please don't

hesitate to ask ANY questions. Good luck & be sure you keep us

updated on .

Debbie Abby's mom DOCGrad

MI

> I joined up a few days ago and just now getting a chance to say

hello and introduce myself and my son.

>

> I'm Lee Ann, SAHM to Ethan (4/21/95) and (10/02/01).

Married to since 1994 and we live in Denton, TX...suburb of

Dallas.

>

> has always preferred to sleep in his car seat, and since

Ethan was the same way and never had any problems with it, we allowed

it. Looking back now, he has always seemed to favor the right back

side of his head.

>

> He was posterior at the onset of labor and stayed that way until 20

minutes before he was born. I started pushing at 11pm and he wasnt

born until 2:15am! The midwife had me trying all sorts of different

positions to get him to turn and it finally worked. Once he did

turn, it was only a matter of minutes until he was FINALLY here.

>

> Anyway, the only reason I mention all that is because I've wondered

if him being posterior for all of labor and most of the pushing stage

could have had any effect on his head and/or neck (possibly causing

torticollis?) and be contributing to his plagio. We dont have an

official diagnosis, but I am sure that is what it is...he has all the

signs: ears are not aligned with each other, one eye appears bigger,

he has a bulgy forehead, and there are " ridges " near his temples.

And, of course, the lovely flat spot on the back right side of his

head...that is a dead give-away, ya know? The diagnosis being used

for the referral is " 754.0 ~ Musculoskeletal deformities skull, face,

or jaw " .

>

> I noticed it and mentioned it to his ped at his 2 month check up.

She looked, and asked about his sleeping position habits. We told

her and she suggested re-positioning, but didnt make it seem like it

was a huge deal. At 4 months, I pointed it out again and we were

told to be more agressive with the re-positioning. She also examined

his fontanel at this time and found it to be on the large side (is

this associated with plagio?). This was of concern to her, along

with the flat spot, so she ordered a referral to a specialist.

>

> After a long and frustrating mix-up/problem with our insurance

company, I call to get the appointment for with a Dr. Jeffery

Hopkins (anyone in DFW area know of this doc? would he be worth the

wait?), only to be told that he cant be seen until late May. I had

done some reading by this time and knew that " time of of the essence "

with this issue and I dont want it to wait that long. So the

insurance lady at the ped's office told me to find a doc in my

insurance book, call and see if they can see Grif and let her know

and she will arrange for the referral.

>

> So now I am basically stuck with finding a doc myself for Grif's

plagio. Any suggestions, anyone? I have a call in to a Dr.

Genecov's office, have spoken to Drs. Byrd and Hobar's office and

told the 1st appointment available is 3/25. I have other names to

call, but is it ok to let this wait this long? Will it be this hard

to get him into see ANY good doc for plagio? I've checked out the

doctors listed at plagio.org and cranialtech.com and that is where I

am getting these names. The others I have to call are: Dr. Day, Dr.

Donahue, Dr. Salyer, Dr. Fearon, Dr. Shapiro, Dr. Hopkins

>

> We are being VERY agressive with his positioning, and we THINK we

can see some changes, but we're not sure. It could just be wishful

thinking, ya know?

>

> I'm a little overwhelmed by all this, never having had anything

seriously wrong with my children up until now. And overwhelmed by

having to find a specialist for him all on my own. Its confusing

since some of the specialist are plastic surgeons, some

neurosurgeons. Is one better than the other in regards to plagio?

>

> Paige ~ I read your intro post yesterday and that is what really

motivated me to write in myself. Can you tell me what doc you saw so

I can avoid him? ;-) What area of Dallas do you live in?

>

> Well, I guess that is about it for me and ....it ought to

be...this is a book for goodness sake LOL! Glad to be here and in

the company of so many nice people who are well aware of how I am

feeling now.

>

> Lee Ann

> Mom to ~ 10/02/01

> DFW area ~ Denton