RE: Words of encouragement needed

[Guest guest]

> Treatment with the Boston Band

>

> The treatment of plagiocephaly with a cranial remolding orthosis

> should commence at approximately 3 months of age. The Boston Band

> is a lightweight, plastic and foam orthosis made from a cast

> impression or a 3-D scan of the infant’s head. It is made of a

> plastic flexible shell lined with polyethylene foam. The foam can

> be modified over time to allow for growth and will provide a

> pathway for the infant’s head to grow into a more symmetrical

> shape. The Boston Band allows the baby to sleep in any position he

> or she wants, yet keeps pressure off the flat spots and constrains

> head growth along the axis of the prominent parts. It offers a

> simple and direct solution to the problem of positional

> plagiocephaly and brachycephaly. Correction usually occurs within 2

> to 3 months for patients beginning Boston Band treatment at 3

> months of age. In older patients, longer treatment time is necessary.

>

http://www.bostonbrace.com/Content/Boston_Band_for_Plagiocephaly.asp

Is this the same product? Sure doesn't sound passive to me. Just a

bit deceptive, perhaps, about the required treatment time. Ten weeks

seems overly optimistic; perhaps your provider compensates in his

predictions. I imagine the manufacturer blithely advising to end

treatment at 8 mm asymmetry to bury the data on a good number of

otherwise of failed cases; whereas the conscientious orthotist will

settle for no more that 3 mm. (I can tell you first-hand, 8 mm is

not a satisfactory result.)

That's the " encouraging " rationalization: orthotist more committed

than manufacturer. I don't think " active " and " passive " mean the

same things to all orthotists.

--

Thad Launderville

town, VT

Clara age 3, STARband '10

[Guest guest]

i would tell him you would feel bette rin a starband and you want to know the prices for star and hanger bands. It will be sent off to be made by the company anyway. I'm sorry you had to suffer through the mold. I'm not sure I could have done that. If you have the money to move for 4 months perhaps you could instead fly out there every 2 weeks to another company you trust. He's really young and I think if you make the ortho order what YOU want you will be happier.

From: bprender29 <bprender29@...>Plagiocephaly Sent: Fri, April 8, 2011 8:46:25 PMSubject: Words of encouragement needed

Some of this is a vent, and I know that there are better providers, better devices, better everything out there. What I am looking for is some encouragement, some positive outcomes under similar circumstances. Anything that will make me feel better about what I am about to do to my sweet baby.I am in Memphis, TN, which is far from being a huge city like NY or Dallas etc., but we do have St. Jude, and many other medical centers of excellence. Apple CEO, Steve Jobs, choose to have his liver transplant here when he could have gone anywhere. We are not a complete hole in the ground. I am not used to second best health care, so to realize that the gold standard is simply out of my reach is blowing my mind (and yes I know many of us are in this same position but that doesn't make it easier). There is only one orthotist who does any kind of cranial bands within a 300+ mile radius of me. One. The closest CT is about 500 miles away, and if not for my 2

1/2 year old son, I would be moving to Dallas for 3+ months to undergo treatment with a DOC band. However, I have the well-being of the whole family to think about. I litterally have no other option but to go with this orthotist I met with today, who was nice enough, but admitted he only does about 20 cranial bands a year. Though he has worked with Hangar bands and Starbands, he prefers and feels most comfortable working with the Boston Brace, which is a passive device. He told me today that my 4 month old son (plagio/brachy) will be in this passive band until he is 12 months old, which is MUCH longer than I was anticipating. The cost is also a lot more than I thought it was going to be for such a device...$1550. I had previously been making myself feel better that at least our cost would be a tiny fraction of what we would pay CT. I wish I were happily ignorant and unaware of the fact that I am making my baby settle for what feels like

a half-baked plan of treatment. I wish I didn't know that his treatment time is going to be double or triple what it would be if we lived nearer to CT. I wish I didn't know that I seem to know more about this than the orthotist who will be shaping his head for life. This guy couldn't even give me my son's numbers that I hear all of you talking about. I don't know his asymmetry or his cephalic index, though they did say I would get those numbers once they scan the old-school plaster mold they did of his head (?). This is soo far from the experiences that I have read on this board! I am sooo frustrated! ~betsyMom to Eli, 4 months old with plagio/brachy of unknown severity

[Guest guest]

Check out this link from another Mom in your area on babycenter. Her post

was in Feb., so maybe you can contact her to see where she ended up going?

http://community.babycenter.com/post/a21637235/where_to_go

Hetland | Hetland Multimedia | pixit@... |

www.hetlandmultimedia.com

Words of encouragement needed

Some of this is a vent, and I know that there are better providers, better

devices, better everything out there. What I am looking for is some

encouragement, some positive outcomes under similar circumstances. Anything

that will make me feel better about what I am about to do to my sweet baby.

I am in Memphis, TN, which is far from being a huge city like NY or Dallas

etc., but we do have St. Jude, and many other medical centers of excellence.

Apple CEO, Steve Jobs, choose to have his liver transplant here when he

could have gone anywhere. We are not a complete hole in the ground. I am not

used to second best health care, so to realize that the gold standard is

simply out of my reach is blowing my mind (and yes I know many of us are in

this same position but that doesn't make it easier). There is only one

orthotist who does any kind of cranial bands within a 300+ mile radius of

me. One. The closest CT is about 500 miles away, and if not for my 2 1/2

year old son, I would be moving to Dallas for 3+ months to undergo treatment

with a DOC band. However, I have the well-being of the whole family to think

about.

I litterally have no other option but to go with this orthotist I met with

today, who was nice enough, but admitted he only does about 20 cranial bands

a year. Though he has worked with Hangar bands and Starbands, he prefers and

feels most comfortable working with the Boston Brace, which is a passive

device. He told me today that my 4 month old son (plagio/brachy) will be in

this passive band until he is 12 months old, which is MUCH longer than I was

anticipating. The cost is also a lot more than I thought it was going to be

for such a device...$1550. I had previously been making myself feel better

that at least our cost would be a tiny fraction of what we would pay CT.

I wish I were happily ignorant and unaware of the fact that I am making my

baby settle for what feels like a half-baked plan of treatment. I wish I

didn't know that his treatment time is going to be double or triple what it

would be if we lived nearer to CT. I wish I didn't know that I seem to know

more about this than the orthotist who will be shaping his head for life.

This guy couldn't even give me my son's numbers that I hear all of you

talking about. I don't know his asymmetry or his cephalic index, though they

did say I would get those numbers once they scan the old-school plaster mold

they did of his head (?). This is soo far from the experiences that I have

read on this board! I am sooo frustrated!

~betsy

Mom to Eli, 4 months old with plagio/brachy of unknown severity

[Guest guest]

Thanks ! I am going to do just that. I spoke with my ped this

morning, and she assures me that the orthotist I saw yesterday, though

perhaps less experienced, does good work. She also told me that the

neurosurgeon she consulted for us says nothing but good things about

the guy. I am going to see if I can get a phone consult with the

Nashville orthotist and feel them out. Thanks again for your help.

On Saturday, April 9, 2011, Hetland <rhetland4@...> wrote:

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> Check out this link from another Mom in your area on babycenter. Her

post

> was in Feb., so maybe you can contact her to see where she ended up going?

> http://community.babycenter.com/post/a21637235/where_to_go

>

> Hetland | Hetland Multimedia | pixit@... |

> www.hetlandmultimedia.com

>

> Words of encouragement needed

>

> Some of this is a vent, and I know that there are better providers, better

> devices, better everything out there. What I am looking for is some

> encouragement, some positive outcomes under similar circumstances. Anything

> that will make me feel better about what I am about to do to my sweet baby.

>

> I am in Memphis, TN, which is far from being a huge city like NY or Dallas

> etc., but we do have St. Jude, and many other medical centers of excellence.

> Apple CEO, Steve Jobs, choose to have his liver transplant here when he

> could have gone anywhere. We are not a complete hole in the ground. I am not

> used to second best health care, so to realize that the gold standard is

> simply out of my reach is blowing my mind (and yes I know many of us are in

> this same position but that doesn't make it easier). There is only one

> orthotist who does any kind of cranial bands within a 300+ mile radius of

> me. One. The closest CT is about 500 miles away, and if not for my 2 1/2

> year old son, I would be moving to Dallas for 3+ months to undergo treatment

> with a DOC band. However, I have the well-being of the whole family to think

> about.

>

> I litterally have no other option but to go with this orthotist I met with

> today, who was nice enough, but admitted he only does about 20 cranial bands

> a year. Though he has worked with Hangar bands and Starbands, he prefers and

> feels most comfortable working with the Boston Brace, which is a passive

> device. He told me today that my 4 month old son (plagio/brachy) will be in

> this passive band until he is 12 months old, which is MUCH longer than I was

> anticipating. The cost is also a lot more than I thought it was going to be

> for such a device...$1550. I had previously been making myself feel better

> that at least our cost would be a tiny fraction of what we would pay CT.

>

> I wish I were happily ignorant and unaware of the fact that I am making my

> baby settle for what feels like a half-baked plan of treatment. I wish I

> didn't know that his treatment time is going to be double or triple what it

> would be if we lived nearer to CT. I wish I didn't know that I seem to know

> more about this than the orthotist who will be shaping his head for life.

> This guy couldn't even give me my son's numbers that I hear all of you

> talking about. I don't know his asymmetry or his cephalic index, though they

> did say I would get those numbers once they scan the old-school plaster mold

> they did of his head (?). This is soo far from the experiences that I have

> read on this board! I am sooo frustrated!

>

> ~betsy

> Mom to Eli, 4 months old with plagio/brachy of unknown severity

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[Guest guest]

Thank you Thad, and I was thinking the same thing re passive v active.

The description of the Boston Brace sounds like my layman's

understanding of an active band. The orthotist also seemed to place

little value on that distinction when I asked him. He listened to my

concerns and sat down and drew me a picture of how it would work and

explained that, in his opinion, it was an active brace (but then

again, he also seemed as if he was unaware there are bands classified

as either active or passive). My confidence in his competence

plummeted during this conversation, but in hindsight, i really wonder

if you are right, and that " active " and " passive " don't mean the same

thing to all orthotists.

On Saturday, April 9, 2011, Thad Launderville <p38thadl@...> wrote:

>> Treatment with the Boston Band

>>

>> The treatment of plagiocephaly with a cranial remolding orthosis

>> should commence at approximately 3 months of age. The Boston Band

>> is a lightweight, plastic and foam orthosis made from a cast

>> impression or a 3-D scan of the infant’s head. It is made of a

>> plastic flexible shell lined with polyethylene foam. The foam can

>> be modified over time to allow for growth and will provide a

>> pathway for the infant’s head to grow into a more symmetrical

>> shape. The Boston Band allows the baby to sleep in any position he

>> or she wants, yet keeps pressure off the flat spots and constrains

>> head growth along the axis of the prominent parts. It offers a

>> simple and direct solution to the problem of positional

>> plagiocephaly and brachycephaly. Correction usually occurs within 2

>> to 3 months for patients beginning Boston Band treatment at 3

>> months of age. In older patients, longer treatment time is necessary.

>>

> http://www.bostonbrace.com/Content/Boston_Band_for_Plagiocephaly.asp

>

> Is this the same product?  Sure doesn't sound passive to me.  Just a

> bit deceptive, perhaps, about the required treatment time.  Ten weeks

> seems overly optimistic; perhaps your provider compensates in his

> predictions.  I imagine the manufacturer blithely advising to end

> treatment at 8 mm asymmetry to bury the data on a good number of

> otherwise of failed cases; whereas the conscientious orthotist will

> settle for no more that 3 mm.  (I can tell you first-hand, 8 mm is

> not a satisfactory result.)

>

> That's the " encouraging " rationalization:  orthotist more committed

> than manufacturer.  I don't think " active " and " passive " mean the

> same things to all orthotists.

>

> --

>

> Thad Launderville

>

> town, VT

>

> Clara age 3, STARband '10

>

>

> ------------------------------------

>

> For more plagio info

[Guest guest]

It's hard to have faith in anyone after the pediatrician's " it will

round out " spiel, and I'm glad we've given you a reprieve from panic,

Betsy. Don't completely disregard your gut feelings, though. My

STARband orthotist also referred to the product as passive, and he

actually sucked.

With STARband, the orthotist can order it closely fit to the original

shape of the head, and work toward full symmetry as the head gets

bigger; or fully symmetrical from the start, which correlates with my

idea of " passive " (on an oblique head, anyway). So you can inquire

if that's what he meant. Probably not, I would think. While that

*would* place you in second class, it might be better than having the

orthotist trying to do something beyond his capability.

Because an even worse thing to watch out for is if he keeps the

helmet excessively loose throughout the treatment. I think all

helmets are made a little loose, to make the break-in tolerable. But

by the second enlargement, you'll know how much torquing your baby

can take, and what it's doing to his head. That sweet orthotist

flavor will come through.

He can take out a lot of liner material, and have you coming back in

a month, or a little, and have you coming back in a couple weeks. I

don't think the growth curve matters, from our point of view -- it's

wasted time, no matter how many millimeters of growth are involved.

If he really can't make the adjustments any more precise, so be it;

you just don't want him doing it on purpose early on, when the head

is growing fast. Liner material can be added back in while you wait,

if necessary.

Orthotists have to get their valuable experience somewhere, and I'm

afraid it has to be from those of us with limited options. Best you

can do is tend your side of the road -- let him know you want an

aggressive treatment, and be an active partner on the " treatment team. "

--

Thad Launderville

town, VT

Clara age 3, STARband '10

On Apr 10, 2011, at 12:47 PM, Betsy Prendergast wrote:

> My confidence in his competence

> plummeted during this conversation, but in hindsight, i really wonder

> if you are right, and that " active " and " passive " don't mean the same

> thing to all orthotists.

[Guest guest]

Thank you again, Thad. And might I just add, I enjoy reading your

posts. You seem to really be on top of it, and able to give succinct

explanations to those of us still feeling our way around in the dark.

I know your knowledge was hard won, and I am sure I speak for everyone

here when I say thank you for so regularly sharing your insight.

~betsy

Mom to Eli (4 months) with plagio/brachy

[Guest guest]

Aw, shucks. I'll pass some of that credit on to my little guinea

pig. Who's going to be fine, I think, but is currently wearing an

eye patch to strengthen her contralateral eye.

Glad to be here!

On Apr 11, 2011, at 2:43 PM, Betsy Prendergast wrote:

> Thank you again, Thad. And might I just add, I enjoy reading your

> posts. You seem to really be on top of it, and able to give succinct

> explanations to those of us still feeling our way around in the dark.

> I know your knowledge was hard won, and I am sure I speak for everyone

> here when I say thank you for so regularly sharing your insight.