Re: Anyone in SD with experience/Frances

[Guest guest]

Frances,

I just wanted to point out that going from 93 to 88 is really

fantastic improvement for brachy correction! Those numbers are the

ratio of Jakub's lenght of his head compared to the width of his

head. Congratulations to Jakub on getting that extra length in.

I'm sorry that you are disappointed, but this improvement in just 5

weeks is really phenomenal. When you look at top view photos, are

you unable to see that his head is lengthening? That degree of

correction is a testament to getting him started on treatment early,

as a recent study has shown brachy correction to be more difficult

than plagio correction. I also wanted to concur that once the head

width is established, there is no way even with a band to " squeeze "

it back more narrow - the way that brachy is corrected is to keep

directing all growth out the back of the head to make the head

longer, and that will normalize the overall look of the head. This

growth is reflected in the changing numbers of the index or cephalic

ratio.

Hopefully you'll be able to see the improvement he has had when you

get them to take additional pictures next week. I understand that

you would like to see more rounding and popping out at the back, so

I certainly hope that happens for Jakub very soon. You could ask

his ortho, but it could be that his head is currently lengthening

into the gap area at the back of the band, and later will be

rounding out as the back of his head abuts up to the rounded

interior of the back of the band later in treatment. Maybe they

could even make an adjustment to the band to make the back of his

head appear rounder, but they may not want to restrict length growth

in any way right now. Would you let us know how the progress pics

go, and what the ortho says about your concerns?

I wanted to say that Remy was an index of 100 at the start of her

aggressive repo - that means her head was the same width as length,

and that is way off the norm! It took us 6 months to achieve the

same amount of improvement in cephalic ratio that Jakub has had in 5

weeks (!) Because her head started off so wide, and the width can't

be narrowed, we really struggled to get some length and rounding to

the back of her head. We started repo at 5 months of age, and she

was a 100. 6 months later, at 11 months, she was a 94, and at 18

months (post repo) she was an 86. We are over the moon about an

86. I think 88 is very good. Hopefully Jakub will get a rounder

shape in back soon to compliment his growth in length of the head.

Take care,

Christie (Mom to Repo'd Remy)

> Hi! I am getting lots of conflicting information regarding which

> band to use for my 5 month-old . The neurologist first

> gave me a Rx for SCOPe, which uses the STARband, but my Ped told

me

> that she had a patient with a HORRIBLE experience with SCOPe and

> actually had to be banded a second time at CT with the DOC band to

> correct what the STARband messed up. So I went back to Neuro and

he

> said fine, then go with CT. He didn't have a preference. Then,

> yesterday I took my 3 year old for his annual physical and got to

> talking to that Ped about and he recommended I talk to

> SCOPe b/c his experience has been that CT seems to band everyone

> walking through the door but SCOPe is more discriminate. So now

what

> should we do? I am beginning to question whether

should

> even be banded afterall. By the way, my older son's ped doesn't

> think needs it. But then again, the neurologist did

say

> we should. I am getting so many conflicting opinions! From what

I

> could gather, the main advantage to using CT is that they use a

> different casting process (more prcise?) than SCOPe and of course

the

> bands are made by different people. Lastly, CT seems to

specialize

> in only bands and staffs PTs for consultations, etc. HELP!

>

> Thanks for listening and I am looking forward to your feedback,

> Kellie

>

>

>

>

>

>

> For more plagio info

[Guest guest]

thanks so much,, it makes me feel a whole lot better now... i kwill wait kto see the new pics on monday.. and will let everyone know......... take care..its sooo hot today...103.. i hope jakub is ok with his band in thesitters.. she has no ac.... redlocks2003 <redlocks@...> wrote:

Frances,I just wanted to point out that going from 93 to 88 is really fantastic improvement for brachy correction! Those numbers are the ratio of Jakub's lenght of his head compared to the width of his head. Congratulations to Jakub on getting that extra length in. I'm sorry that you are disappointed, but this improvement in just 5 weeks is really phenomenal. When you look at top view photos, are you unable to see that his head is lengthening? That degree of correction is a testament to getting him started on treatment early, as a recent study has shown brachy correction to be more difficult than plagio correction. I also wanted to concur that once the head width is established, there is no way even with a band to "squeeze" it back more narrow - the way that brachy is corrected is to keep

directing all growth out the back of the head to make the head longer, and that will normalize the overall look of the head. This growth is reflected in the changing numbers of the index or cephalic ratio. Hopefully you'll be able to see the improvement he has had when you get them to take additional pictures next week. I understand that you would like to see more rounding and popping out at the back, so I certainly hope that happens for Jakub very soon. You could ask his ortho, but it could be that his head is currently lengthening into the gap area at the back of the band, and later will be rounding out as the back of his head abuts up to the rounded interior of the back of the band later in treatment. Maybe they could even make an adjustment to the band to make the back of his head appear rounder, but they may not want to restrict length growth in any way right now. Would you let

us know how the progress pics go, and what the ortho says about your concerns?I wanted to say that Remy was an index of 100 at the start of her aggressive repo - that means her head was the same width as length, and that is way off the norm! It took us 6 months to achieve the same amount of improvement in cephalic ratio that Jakub has had in 5 weeks (!) Because her head started off so wide, and the width can't be narrowed, we really struggled to get some length and rounding to the back of her head. We started repo at 5 months of age, and she was a 100. 6 months later, at 11 months, she was a 94, and at 18 months (post repo) she was an 86. We are over the moon about an 86. I think 88 is very good. Hopefully Jakub will get a rounder shape in back soon to compliment his growth in length of the head.Take care,Christie (Mom to Repo'd Remy)> Hi! I am getting lots of conflicting information regarding which> band to use for my 5 month-old . The neurologist first> gave me a Rx for SCOPe, which uses the STARband, but my Ped told me > that she had a patient with a HORRIBLE experience with SCOPe and > actually had to be banded a second time at CT with the DOC band to > correct what the STARband messed up. So I went back to Neuro and he > said fine, then go with CT. He didn't have a preference. Then, > yesterday I took my 3 year old for his annual physical and got to > talking to that Ped about and he recommended I talk to > SCOPe b/c his experience has been that CT seems to band everyone > walking

through the door but SCOPe is more discriminate. So now what > should we do? I am beginning to question whether should > even be banded afterall. By the way, my older son's ped doesn't > think needs it. But then again, the neurologist did say > we should. I am getting so many conflicting opinions! From what I > could gather, the main advantage to using CT is that they use a > different casting process (more prcise?) than SCOPe and of course the > bands are made by different people. Lastly, CT seems to specialize > in only bands and staffs PTs for consultations, etc. HELP! > > Thanks for listening and I am looking forward to your feedback,> Kellie> > > > > > > For more plagio info