Re: Seeking advice on where to start??

[Guest guest]

Hi again-

You are not being a " neurotic mother " at all! You're obviously being

a terrific mom who is doing everything you can do to help you

daughter! I know we have some Boston area members in our group, I

hope they read your post and reply with some helpful area information

for you.

Most of our members, myself included, had been referred by their ped.

to a pediatric neurosurgeon for further evaluation of the child's

head shape. Check out: http://www.plagiocephaly.org/support then

check out " questions for the Dr " there is a list of questions for the

ped., specialist & orthotists - there's some good information that

might be of help to you.

The ealier you notice plagio - the better chance of full improvement

you have. So you are right to be doing everything you are doing

already - you're daughter is very lucky to have such an alert mom!

Good luck, please keep us updated.

Debbie Abby's mom DOCgrad

MI

> I posted a few days ago regarding a sleep positioner- thanks for

all

> the friendly, helpful responses!

> My 3 month old daughter has had a noticeable flat spot on her right

> side since one month of age. Our ped. has told us to keep her off

> that side which we have tried and tried to do. We've used

positioners

> and the tips we found online, but she keeps wiggling her way back

as

> soon as she can. I feel like we've definitely lessened the time

spent

> on that spot but it's not enough and it seems to be getting worse.

> Her right ear is pushed noticeably farther forward than her left. I

> plan to call my ped. tomorrow (office is closed today) and hope to

> get more advice. My concern is how long should I wait before at

> least consulting a specialist? My gut says to go know and at least

> get an assessment of where we stand. I don't quite know where to

> start...what type of specialist should I look for? I looked at the

> cranial technology website's list but the closest one is a good 4

> hours away. I live in MA and it seems like there must be someone

in

> the Boston or Providence area with experience in this.

>

> I guess I'm feeling a little lost and not sure whether to run full

> steam ahead or wait it out longer.....I also wonder whether I'm

being

> a neurotic first time mom since everyone around me keeps saying

she's

> fine and I should just relax!

> Any advice?

[Guest guest]

Me again:

I did a search of our archive looking for any posts with " boston "

mentioned in them. I knew I remembered hearing about the " Nopco "

helmet out of Boston area - I've copied & pasted the message below,

it was Message #29479 from March, there's a mention of a specialist

in the post too.....hope this helps!

Debbie Abby's mom DOCGrad

MI

From: " scote5423 " <kscote@...>

Date: Mon Mar 18, 2002 1:04 pm

Subject: Plagiocephaly - Nopco in Boston

I have tried to send this message a few times and keep messing up so

hopefully all of you havent had to read this multple times

Thank you to all of you that responded and helped me out. Special

thanks to and who gave me lots of info about

Children's Hospital and the Nopco located there.

We decided to go to Children's hosptial and get a 2nd opinion on

March 29th with Dr, Proctor. We will then use the Nopco there and

will try and get Mike that highly recomends

We feel better that Reid will be seeing a Pediatric Neursurgeon vs

the one that see's adults like we saw the other day.

We just want to get this underway so Reid can get better.

thank you for offering to get together over Easter weekend

for coffee. Unfortunatley out families live in NH and we wil be there

all weekend. West Springfield is over an hour away from Wilmington

(maybe more???) I am near Woburn/ Burlington - are you familar with

the area? Maybe we can make it happen another time.

Thank you again to all and you will be hearing from us again once

Reid gets his helmut/band.

~ Sue - Reid's mom

> Hi Sue,

>

> I am so surprised, these are not the experiences we had at all, but

then

> again we knew nothing about plagio until we were sent into Nopco

for the

> casting. It was after the casting that I found this website and

began

> researching the different types of helmets. We did not see any

pictures of

> helmets, but they had some made up there that we were able to see

and hold.

> I have seen about 6 other babies there in helmets, all with the

open on

> top/no chin strap style. In addition to the open top, ours has

holes all

> around the back and sides for ventilation. The Nopco we go to is in

> Children's Hospital, on Longwood Avenue, and there we see Mike

Azarian. The

> card (if they gave you one) lists all of their offices with contact

numbers.

> If you are unhappy with where you are going you may want to try the

one at

> children's, or you may want to try cranial tech. After researching

this I

> was really concerned that we decided to go with the locally made

versus the

> Doc or starbands, but we decided to give it a try and if we were

unhappy

> after a month we would look into switching. I'm sure by luck, but

within

> the first 2 weeks of wearing it hit a growth spurt and you

could easily

> see the improvement. From there on we stuck with it and have been

very

> happy with their service and results. I have called on various

occaisions

> with questions and they have always talked to me (and didn't treat

me like a

> neurotic mother!)

>

> 's condition was considered moderate with a 13.5 difference on

the

> measurement, the last time we went he was considered mild and had a

5

> measurement. We will be in Western Mass. for easter weekend (I

don't know

> if that's where Wilmington is or not), but we'll be in West

Springfield and

> Goshen visiting family. If that is close to you we could try to

meet up for

> coffee and you could see , sporting his helmet, and get a

better overall

> picture. I have about a hundred million pictures of him in it, but

our

> scanner has been broken so I have not found a way to email them as

of yet!

>

> You are doing the right thing by researching all options. I found

that the

> majority of this group uses the DOC band and they will be able to

provide

> you with a lot more info. on that. It's a very difficult choice to

make, to

> band or not, and if so, what type to use. For us, our decision was

made for

> us by our neuro, as we didnt' even know there were different

options out

> there. Again, we gave it a try for a month and were very happy so

we

> continued. Both economically, and geographically, Nopco at

Children's has

> worked out for us- we had the option of going to a nopco a little

closer to

> home, but have really liked working the Mike so the drive to Boston

has been

> worth it.

>

> Good luck with Reid, I'm sure what ever you decide will be for the

best!

>

> ~

>

> Re: Plagiocephaly - Nopco in Boston? HELP!

> Importance: High

>

>

> Hi -

> I just talked to Nopco again this morning and the CPO I spoke with

barely

> could answer my questions and I am really really concerned. I dont

want to

> sound like a crazy mom but i told him when we came in we didnt see

any

> pictures I have no idea what the helmut looks like. I told him I

would

> prefer one with the open top (similar to a band) and he said it is

closed on

> the top with holes throughout the whole helmut. I asked why it was

closed on

> the top and what advantage does that have over the open and he

stumbled and

> couldn't answer me. The pictures I have seen on the web with the

open bands

> look so cute on the children. I have seen none that are an actual

helmut,

> especially on a 4 1/2 month old. I asked him if he had any pictures

and he

> said he may be able to find one and if he could how could he get it

too me?

> I asked what kind of technology they had there, for instance could

he scan

> it and email it to me and he said no not there but he might be

able to do

> it from home???? I feel like I'm dealing with a ma and pa shop! I

can't even

> believe they dont have pictures of their patients and success

stories. What

> should I do, was this like your experience? Should I go to the othe

nopco or

> travel to Cranial Tech.???I just want to do the best thing for Reid.

>

> Thank you so much for your response and I really hope things go

well with

> and he gets out of his helmut in 2 weeks

>

> Much Thanks -

>

> Sue, Reid's mom

[Guest guest]

Your daughter sounds very much like my son. His ear looked like it

was going to slide off his head!

I would recommend getting a referral now. It takes a while to get

an apointment with a specialist, if you are going to see one. We

never saw a specialist, we just went right to CT.

We are fortunate to be 15 minutes from CT, but you might want to

invest the 4 hours to go down there at least for the initial

consult. I think a lot of the CT have free consultations. They

will give you a very honest opinion and measure her. I think the

previous posts from members in Boston said NOPCO was where they

went. I just turned 30 and can't remember as well!

My son got his DOC Band at 5 months. The results have been quite

remarkable so far!

Good luck!

Dane's Mom (DOC Band 2/14)

> I posted a few days ago regarding a sleep positioner- thanks for

all

> the friendly, helpful responses!

> My 3 month old daughter has had a noticeable flat spot on her

right

> side since one month of age. Our ped. has told us to keep her off

> that side which we have tried and tried to do. We've used

positioners

> and the tips we found online, but she keeps wiggling her way back

as

> soon as she can. I feel like we've definitely lessened the time

spent

> on that spot but it's not enough and it seems to be getting worse.

> Her right ear is pushed noticeably farther forward than her left.

I

> plan to call my ped. tomorrow (office is closed today) and hope to

> get more advice. My concern is how long should I wait before at

> least consulting a specialist? My gut says to go know and at

least

> get an assessment of where we stand. I don't quite know where to

> start...what type of specialist should I look for? I looked at the

> cranial technology website's list but the closest one is a good 4

> hours away. I live in MA and it seems like there must be someone

in

> the Boston or Providence area with experience in this.

>

> I guess I'm feeling a little lost and not sure whether to run full

> steam ahead or wait it out longer.....I also wonder whether I'm

being

> a neurotic first time mom since everyone around me keeps saying

she's

> fine and I should just relax!

> Any advice?