Re: NOPCO Boston Children's Hospital

[Guest guest]

Hi,

I have been lurking for several months and was nudged out by this

post. My daughter was diagnosed with mild brachycephaly at 4 months

(although I noticed it almost immediately after birth) and we tried

aggressive repositioning for almost three months until she was banded

at NOPCO Children's Hospital at 7 months.

I have mixed feelings about NOPCO. My pediatrician had her own

daughter banded there and we have dealt with Children's in the past

and LOVED them, so we chose to use NOPCO. Also, our plastic surgeon

at Children's recommended NOPCO.

However, having heard so many good things on the list about Cranial

Technologies, I wonder if we should have looked at them - however,

the locations were not a possibility for us.

In any event, we went with NOPCO. The Children's location deal only

with kids, although they do other orthodic devices. I felt that they

were very knowledgeable about banding, and they do the 3D scans

instead of traditional casting. They also feature bands with designs

already embedded, for those of us who are less talented than others

on the list (you go parents with talent - I am envious!!). I really

like the Children's location, although for most of our adjustments,

we go to another location which is closer to home (1 hr each way vs 2

hrs each way).

I feel like they have been responsive to my questions and concerns,

but I have also felt that some of their techs are less experienced

and so I request the ones I like.

After starting the band, I also don't feel like I have had the same

personalized experience that other rave in posts about CT, but I do

see an slight improvement in head shape, so I guess that is what

matters.

One great piece of advice our tech gave us is that CVS pharmacy has

these alcohol wipes (like baby wipes) to use to clean out the helmet,

and then lightly powder with cornstarch baby powder (not talc!). We

have done this once a day since the start (a couple times a day

during the early sweating days) and haven't had the odor problems.

I really want to thank everyone on the board for easing my guilt and

answering my questions (thru the archives). We made it through

sweating, red spots, heat rash, funny stares, rude comments, and our

<former> obnoxious pediatrician all with the help from posts here.

It has really been a life saver!!!!!!!!!

Not sure if I answered the NOPCO question Karin, but I am happy to

talk more if you are interested!

>

> Hi,

> I have been reading the archives and have read nothing but bad

things

> about NOPCO in Boston Children's Hospital. Has anyone had a good

> experience they would like to share??

>

> Thanks so much

> Karin

>

[Guest guest]

Hi,

I would be interested to know how long your daughter has been in her

helmet, and can you post a picture of her band? How long is she

expected to wear it, do you have measurements...

I've heard from mostly frustrated parents about NOPCO but don't know

too much about it. It is really a shame that some areas of the country

don't have good choices for banding. Boston has great hospitals for

most things, but there are a fair number of people in that area that

aren't too happy with the banding choices. I know that not everyone

can travel and pay out of pocket. We were so fortunate that our local

ortho was very good.

Since your daughter's brachy was mild she should still do well in the

helmet, I would think.

-christine

sydney 2 yrs starband grad

> >

> > Hi,

> > I have been reading the archives and have read nothing but bad

> things

> > about NOPCO in Boston Children's Hospital. Has anyone had a good

> > experience they would like to share??

> >

> > Thanks so much

> > Karin

> >

>

[Guest guest]

Hi Karin,

We just had our son scanned and fitted at NOPCO. I just uploaded a

pic ( N) It's the old rule of bad experiences vs good experiences

I think...if you have a bad experience you will tell xx% more people

than if you have a good experience.

So far, so good . The fitting experience was easy. Everyone was

friendly. My son is nearly 1 week in the band and was already napping

in it on the first day (despite not having to, he fell asleep) He was

sleeping through the nite in it by night 3. He really doesn't seem to

mind it.

I also note, that as other parents stated, the sweating tapers off

after a few days (despite the outdoor temperature having risen, not

fallen). The CVS alcohol wipes were a good find as well -- a

suggestion I found on this site.

I use the very lovely scented California baby detangling spray on his

hair when I take his helmet off to give him short breaks vs washing

his hair multiple times a day. Freshens it up til his evening bath. I

always make sure he's completely dry by the time I re-helmet him.

The only hiccup in my NOPCO experience was the front-office when they

forgot to call and tell me they hadn't received the letter from the

insurance (UHC) and our band wouldn't be ready at the originally

scheduled date. They did expedite it, however, and it was made within

a week vs the normal 2 weeks.

We're just getting started but if I run into negative experiences with

NOPCO I have no reason to sugar coat it & may write an update to this

post. I like to form my own opinions versus only counting on someone

elses bad experience. There are always two sides to every story as

they say.

We are on the South Shore and were originally going to have our

fittings in Braintree. I overheard someone in the office saying they

preferred the downtown NOPCO at Children's vs Braintree. Claimed they

seemed to be more experienced. I think I'll stick to downtown more for

the continuity of care than anything else.

Good Luck to you!!

>

> Hi,

> I have been reading the archives and have read nothing but bad things

> about NOPCO in Boston Children's Hospital. Has anyone had a good

> experience they would like to share??

>

> Thanks so much

> Karin

>

[Guest guest]

Hi ,

I'm glad things are going well with your son's band. Is it a starband

or their own helmet (I've heard both, so not sure which is accurate).

Please try and post a picture of him in his band if you can. I hope

you start seeing improvement soon.

-christine

sydney 2 yrs starband grad

> >

> > Hi,

> > I have been reading the archives and have read nothing but bad things

> > about NOPCO in Boston Children's Hospital. Has anyone had a good

> > experience they would like to share??

> >

> > Thanks so much

> > Karin

> >

>

[Guest guest]

Glad to see other positive posts. I swear I see improvement and it's

only a week...thought I was crazy but the nanny mentioned it too

(before I told her my own thoughts :-)

> > >

> > > Hi,

> > > I have been reading the archives and have read nothing but bad

> things

> > > about NOPCO in Boston Children's Hospital. Has anyone had a

> good

> > > experience they would like to share??

> > >

> > > Thanks so much

> > > Karin

> > >

> >

>

[Guest guest]

We got to Dr . It makes sense that he would work with NOPCO

being that it's outside his office door. Children's is a teaching

hospital for Harvard Med and from the standpoint of tracking patient

progress, I would imagine it's much easier than tracking with them,

than with an organization out of state.

Also: If he is doing a study, I'm all about supporting it...the more

proof we have in this community which shows successful treatment, the

more ammo we have for our insurance claims.

I don't think it's a rivalry as it seems to be sometimes represented

by people on the board...just two options. It's nice to have options!

Clearly there are people who have distinct preferences but bottom line

is, both have worked.

I will say, for the cost difference + the drive with gas at $4+ a gal,

I'm perfectly happy with NOPCO if the results are the same.

P

> > > >

> > > > Hi,

> > > > I have been reading the archives and have read nothing but bad

> > things

> > > > about NOPCO in Boston Children's Hospital. Has anyone had a

> > good

> > > > experience they would like to share??

> > > >

> > > > Thanks so much

> > > > Karin

> > > >

> > >

> >

>

[Guest guest]

....One more thing...we also have UHC. Like you, we were rejected and

ended up paying $2060 out of pocket. I agree, I don't think it's 'that

bad' compared to some of the other out of pockets people have

mentioned on the board.

We are going to try to appeal it but I'm not too hopeful from what I

hear. I'll keep you posted though.

> > >

> > > Hi,

> > > I have been reading the archives and have read nothing but bad

> things

> > > about NOPCO in Boston Children's Hospital. Has anyone had a

> good

> > > experience they would like to share??

> > >

> > > Thanks so much

> > > Karin

> > >

> >

>

[Guest guest]

It's a Boston-Band (not sure if this is a new logo but they imprint it

on the back)...they told me it's not a star band (star is a brand and

NOPCO uses their own scanner & tech). Ironically the designs offered

at NOPCO are the same as the designs offered on the star band website...

> > >

> > > Hi,

> > > I have been reading the archives and have read nothing but bad

things

> > > about NOPCO in Boston Children's Hospital. Has anyone had a good

> > > experience they would like to share??

> > >

> > > Thanks so much

> > > Karin

> > >

> >

>