Re: Plagiocephaly - Nopco in Boston? HELP!

[Guest guest]

In a message dated 03/15/2002 9:14:26 AM Central Standard Time,

kscote@... writes:

<< 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, >>

Sorry to break in here, but I just wanted to say that my daughter wore

a locally made helmet that was not open on the top. It had holes drilled in

it all over for ventilation. She looked adorable in her helmet and it was

clear plastic so we could see her head and hair right through it! It was a

passive design and was shaped on the inside for a more ideal head shape and

the point was as her head grew in all directions that it would mold to the

shape of the helmet. (The top of her head included which is why it was

completely closed) I'm sorry to hear that the person you spoke to did not

seem very knowledgeable. There really is a reason behind the design and it

can be very, very effective especially on younger babies (like yours) if it

is in the hands of an experienced and knowledgeable orthotist.

Good luck and let us know what you decide.

Marci (Mom to )

Oklahoma

[Guest guest]

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

RE: Plagiocephaly - Nopco in Boston?

Hi Sue,We live on the South Shore in MA and have been going through NOPCO atChildren's for a couple of months now. We have had great experience andresults with them. They make a passive helmet, that looks a lot like theband, open on top and no chin strap. We have Harvard Pilgrim HMO and theycovered 80% without any issue, for which I am very grateful! My son wasfitted at 4.5 months and now, at 8 months, we are hoping we have 2 moreweeks to go and we have about 85-90% correction. We have been going inevery 3 weeks for checks, and we have always seen Mike who has been so muchmore than fantastic through this process. Have you had the casting doneyet? Where in MA are you from?~, 's mom-----Original Message-----From: scote5423 [mailto:kscote@...]Sent: Thursday, March 14, 2002 3:41 PMPlagiocephaly Subject: Plagiocephaly - Nopco in Boston?Does anyone have experience with nopco in Boston. They are making my sons helmut and I have no idea what it is going to look like and if they are a reputable company. I was only familar with Cranial Tech DOC band-Any help would be appreciated -Sue For more plagio info

[Guest guest]

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!

~

-----Original Message-----From: & Sue Cote [mailto:kscote@...]Sent: Friday, March 15, 2002 10:15 AMPlagiocephaly Subject: 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

----- Original Message -----

ADVERTISEMENT

[Guest guest]

Hi Sue:

I can understand why you are concerned. Especially if noone could

answer any of your questions or provide any pictures of the actual

helmet style that Reid will be receiving.

I am glad has replied to you already & hope she helped with

your concerns.

I just wanted to say to follow you mommy instincts. How far a drive

would it be to your closest Cranial Tech?

Debbie Abby's mom DOCgrad

MI

> 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]

Hello Sue,

I don't mean to eaves drop on your conversation, but I just wanted to let you know that my son, Riley, got his helmet from NOPCO in Boston and his does have an open top, and there are also holes drilled in it for ventilation. If yours doesn't have an open top, there may be a reason. My son was actually casted at Children's Hospital in Boston but we picked up the helmet from the Burlington office. They seemed very nice and knowledgable. I also did some research into NOPCO and they are owned by the company that invented back braces used for scoliosis and have a pretty impressive history in research and development. If you weren't happy with your experience at NOPCO, I'm sure you could go to another branch. My doctor gave me a list which I'd be happy to give to you if you are interested.

I hope this relieves some of your fears...let me know what happens.

Michele (Riley's mom, helmet March 8, 2002)

& Sue Cote <kscote@...> wrote:

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

RE: Plagiocephaly - Nopco in Boston?

Hi Sue,We live on the South Shore in MA and have been going through NOPCO atChildren's for a couple of months now. We have had great experience andresults with them. They make a passive helmet, that looks a lot like theband, open on top and no chin strap. We have Harvard Pilgrim HMO and theycovered 80% without any issue, for which I am very grateful! My son wasfitted at 4.5 months and now, at 8 months, we are hoping we have 2 moreweeks to go and we have about 85-90% correction. We have been going inevery 3 weeks for checks, and we have always seen Mike who has been so muchmore than fantastic through this process. Have you had the casting doneyet? Where in MA are you from?~, 's mom-----Original Message-----From: scote5423 [mailto:kscote@...]Sent: Thursday, March 14, 2002 3:41 PMPlagiocephaly Subject: Plagiocephaly - Nopco in Boston?Does anyone have experience with nopco in Boston. They are making my sons helmut and I have no idea what it is going to look like and if they are a reputable company. I was only familar with Cranial Tech DOC band-Any help would be appreciated -Sue For more plagio info