Words of encouragement needed

[Guest guest]

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]

Hi Betsy,

Well if he does a good job even with a boston band his head should be fixed

before 12 months. The band looks pretty " normal " and comparable to starband. The

ortho's experience is not great, but he does have some, and as you say it is the

whole family you need to consider. The band should fit well - close to the head

with extra room where the head is flat. If it does that it should work. Plaster

casts are not that bad. A few years ago CT was still using that technique. It

really isn't a big deal, but the baby will likely be uncomfortable for a few

minutes. I've heard you should bring a bottle if they take one and see that they

are slightly hungry. Also a pacifier or favorite toy are good.

You are paying less then CT (which is close to $4000) but I know that isn't the

most important thing. I would just try to stay positive and keep on top of your

ortho. I recommend pictures every week or two to make sure you are seeing

changes in the right direction. If the band works (which it seems it will) you

will start feeling better.

-christine

sydney, 5 yrs starband grad

>

> 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]

Thank you and " critter lover " (love the name!).  My ped reassured me yesterday that this guy does good work and that the neurosurgeon she consulted for us had a lot of positive things to say about him.  I am still going to try to get a phone consult with a Nashville orthotist, who is mentioned on the baby center board, on Monday to feel her out (it's still a 7 hour round-trip drive and we don't have any family to stay with up there).  After reading several boston band success stories, being reassured by my ped, whom I respect and trust, and of course getting some perspective from the wonderful people on this board, I am feeling a whole lot better than I was a few days ago.  Hey, this guy might turn out to be great and I will be able to add him to our database to fill the echoing void that is cranial band providers in Memphis! 

On Sat, Apr 9, 2011 at 10:19 PM, christineashok <christineashok@...> wrote:

 

Hi Betsy,Well if he does a good job even with a boston band his head should be fixed before 12 months. The band looks pretty " normal " and comparable to starband. The ortho's experience is not great, but he does have some, and as you say it is the whole family you need to consider. The band should fit well - close to the head with extra room where the head is flat. If it does that it should work. Plaster casts are not that bad. A few years ago CT was still using that technique. It really isn't a big deal, but the baby will likely be uncomfortable for a few minutes. I've heard you should bring a bottle if they take one and see that they are slightly hungry. Also a pacifier or favorite toy are good.

You are paying less then CT (which is close to $4000) but I know that isn't the most important thing. I would just try to stay positive and keep on top of your ortho. I recommend pictures every week or two to make sure you are seeing changes in the right direction. If the band works (which it seems it will) you will start feeling better.

-christinesydney, 5 yrs starband grad >> 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>