Re: contacting Children's Hosp. Boston??? FEEDBACK ON DR. PROCTOR

[Guest guest]

I am also in the process of trying to make an appointment at

Children's in Boston. I spoke with a very nice woman in the

Craniofacial Anomalies Clinic yesterday and she said that they are no

longer seeing patients for plagio through the clinic and told me to

contact either Dr. or Dr. Proctor. We are concerned about

ruling out cranio. so I figured Dr. Proctor, as a neurosurgeon, would

be more appropriate. All I got was an answering machine and I have

yet to try his office again today. I'd be interested in hearing some

specifics about anyone's experiences with him! I will see the

neurosurgeon here in Maine first--I am setting up the appointment at

Children's for a second opinion. It should only take a couple of

weeks to get into the doctor in Portland, or so they tell me!

Also---how does the consult at NOPCO work? Will they see us before a

doctor sends us?? Just to get some info.

Just getting all those ducks lined up......

Barb (mother to , 4 mos)

Kennebunkport, Maine

> > > > > Hi, as a new member to the Torticollis group, I was

> lead

> > to

> > > > > this group...

> > > > > Anyone out there have any suggestions for positioning for

> > > nighttime

> > > > > sleeping? Jack is not yet rolling over, but is smart

enough

> to

> > > move

> > > > > away from all the positioning ideas I've come up with to

> keep

> > his

> > > > > head facing midline or towards his left shoulder. He finds

> his

> > > way

> > > > > to the comfort zone and looks right much of the night. His

> > > plagio

> > > > > has definetly worsened over the past two months since his

> > > torticollis

> > > > > diagnosis. He does not have any facial asymetry, but I am

> > afraid

> > > > > with time he will develop this.

> > > > > HELP. I want to try EVERYTHING before we discuss a

helmet.

> > His

> > > four

> > > > > month checkup is next week and I will be asking for a

> referral

> > to

> > > > > the plagioclinic at Children's Hospital in Boston to get

> there

> > > > > feedback.

> > > > > Please, any ideas are appreciated.

> > > > > Thank you

> > > > >

> > > > > le, Mother of Jack 4months with Right Torticollis and

> > > > > associated Right Positional Plagiocephaly

[Guest guest]

Hi Barb,

I have heard great things about Dr. , but also that it is a

long wait to see him. I never actually saw Dr. Proctor, though we

did have an appt with him. Drs. Proctor, Madsen, Goumnerova,

and I can't remember who else all work in the neurosurgery clinic.

We also needed to rule out cranio and though we were referred to

Goumnerova, they put us in with Madsen. When I called to make the

appt for a followup with Madsen, they put us in with Proctor but

when we actually arrived he was in surgery and we saw Dr. .

Your head spinning yet? . Anyway, it seems that all the doctors

there are " interchangable " as far as the way the schedule and you'll

never know who you actually see. Dr. Madsen was okay, very quick

vist, just took measurements and said she was very severe and

banding wasn't really an option if we ever wanted her to have a

round head. He wrote us a script (which I requested he

write " molding helmet " on instead of NOPCO which is the standard so

we could keep our options open) and told us to bring it downstairs

to NOPCO. We waited a couple hours and had a quick consult. I'm

not sure if you need a script before having a consult or not. You

do NOT need a script to have a consult at cranial tech though. If

you bring one for exercises though the clinicians can at least help

with showing you that in addition to giving you a headshape eval.

Good for you for getting your " ducks lined up " as it can take a long

time! Though we got in with Dr. Madsen quick, it took over a month

to get the go ahead with our insurance. Good luck.

, mom to Hannah, DOCgrad

Cape Cod, Ma

> > > > > > Hi, as a new member to the Torticollis group, I

was

> > lead

> > > to

> > > > > > this group...

> > > > > > Anyone out there have any suggestions for positioning

for

> > > > nighttime

> > > > > > sleeping? Jack is not yet rolling over, but is smart

> enough

> > to

> > > > move

> > > > > > away from all the positioning ideas I've come up with to

> > keep

> > > his

> > > > > > head facing midline or towards his left shoulder. He

finds

> > his

> > > > way

> > > > > > to the comfort zone and looks right much of the night.

His

> > > > plagio

> > > > > > has definetly worsened over the past two months since

his

> > > > torticollis

> > > > > > diagnosis. He does not have any facial asymetry, but I

am

> > > afraid

> > > > > > with time he will develop this.

> > > > > > HELP. I want to try EVERYTHING before we discuss a

> helmet.

> > > His

> > > > four

> > > > > > month checkup is next week and I will be asking for a

> > referral

> > > to

> > > > > > the plagioclinic at Children's Hospital in Boston to

get

> > there

> > > > > > feedback.

> > > > > > Please, any ideas are appreciated.

> > > > > > Thank you

> > > > > >

> > > > > > le, Mother of Jack 4months with Right Torticollis

and

> > > > > > associated Right Positional Plagiocephaly

[Guest guest]

Barb,

I also wanted to add that I'm not sure how pro banding the docs in

the neuro clinic are. It was a given at our first appt when she was

20mm off, but when she had improved to 10mm at our second appt they

would not give us a script for a 2nd band. This is still considered

moderate and many people band for less assymetry than that. I have

heard people who saw Dr. get a script with lesser assym

measurements than we were denied for. Our ped wrote us the 2nd

script. If you do decided you want to band and she is in

that more mild/moderate range Dr. may be your better bet.

Good luck.

, mom to Hannah, DOCgrad

Cape Cod, Ma

> > > > > > > Hi, as a new member to the Torticollis group, I

> was

> > > lead

> > > > to

> > > > > > > this group...

> > > > > > > Anyone out there have any suggestions for positioning

> for

> > > > > nighttime

> > > > > > > sleeping? Jack is not yet rolling over, but is smart

> > enough

> > > to

> > > > > move

> > > > > > > away from all the positioning ideas I've come up with

to

> > > keep

> > > > his

> > > > > > > head facing midline or towards his left shoulder. He

> finds

> > > his

> > > > > way

> > > > > > > to the comfort zone and looks right much of the

night.

> His

> > > > > plagio

> > > > > > > has definetly worsened over the past two months since

> his

> > > > > torticollis

> > > > > > > diagnosis. He does not have any facial asymetry, but

I

> am

> > > > afraid

> > > > > > > with time he will develop this.

> > > > > > > HELP. I want to try EVERYTHING before we discuss a

> > helmet.

> > > > His

> > > > > four

> > > > > > > month checkup is next week and I will be asking for a

> > > referral

> > > > to

> > > > > > > the plagioclinic at Children's Hospital in Boston to

> get

> > > there

> > > > > > > feedback.

> > > > > > > Please, any ideas are appreciated.

> > > > > > > Thank you

> > > > > > >

> > > > > > > le, Mother of Jack 4months with Right

Torticollis

> and

> > > > > > > associated Right Positional Plagiocephaly