Need opinions and or advice

October 20, 2004

I have been debating whether to join this group for a while and am

very hopeful that I can get some solid advice and perhaps some peace

of mind. I have twin boys that were banded with the DOC band when

they were four months old. Baby " A " had mild tort and was diagnosed

with brachy head...Baby " B " had moderate to severe tort and had the

typical plagio with right side of head flat, ear misalignment,

facial assymetry, etc...he was the breech baby for all of the

pregnacy and received a lot of utero constraint. He has

typical " breech head " and it was just magnified and made more severe

with his tort and laying on his flat side constantly for the first

few months of life. Both boys received PT since 4 months of age.

Baby " A " wore his helmet for 7 weeks and received okay results with

the band. I asked the OT at Cranial Tech if he should need another

band and she said no and I even asked her to ask the orthotist at

the headquarters and they said he did not need another. He is now

12 1/2 months old and though not perfectly round (his head has

rouned from looking at his profile but still looks a little " block

headish " when looking straight at his back)...my husband and I hope

with more hair and continued growth of his head that no one will be

able to tell and that although it's not " perfect " he may grow out of

it with time...his tort has been resolved for several months.

Brother " B " wore two bands for five months(starting at four

months)...he received partial correction to his asymetry and still

is fairly flat on his right side. I think it may look more obvious

because he has one ear larger (due to utero contraint) than the

other and so it magnifies his asymmetry. He continues to get

stretched with the football hold 5-8x a day and goes to a PT every

so often. I hve been a " freak " about regression from the day he got

his helmet off and now that it's been 3 months after the band

continue to be crazy about his head. Sometimes I think I clearly

see a change for the worse and other times I think it's an optical

illusion especially because his head was never fully corrected. We

opted not to get a casting after his second band because it was so

traumatic and we really thought we would never consider a third

band. I continue to try to reposition him as much as I can because

he does like to sleep on his flat side. My dilema is should I let

it go and say we have done everything and with time,hair and head

growth, no one will ever notice or should I continue to pursue

helping him out. I so want to do the best thing for him and am

regrettful that he did not receive as good of correction as I have

seen others receive especially getting the helmet and PT so early

on. He is now a walking 12 1/2 month old toddler...I will continue

PT until 18 months and will repo him when I can but what else can I

do...should I let it go and hope for the best??? I know doctors

would not support another band unless I made a huge stink of it and

quite honetly why would it work now? Is there anyone out there that

has seen improvement during the second year without any intervention

except for what I mentioned above? I just feel alone because I

don't really have any guidance especailly from the medical community

which really never helped me from the beginning...should I just let

it go?? Any success stories with babies looking better with

time??? Sorry so long winded I just wanted to give as much detail

as possible. Also could his partial correction be due to his breech

head...anyone else with similar circumstances??? Thanks.

October 20, 2004

Welcome to the group.

Do you have pictures from before and after? Usually CT takes these and will give you copies if you ask. Did they do entrance and exit measurements? They don't always do the measurements - depends on insurance.

Baby A (brachy) - Brachy babies are hard to correct and can keep a somewhat blockhead shape. The band does restricts further widening and allows the lower back of the head to fill in. It can somewhat hold head heigth. So, even when done with treatment the appearance of width and head heigth may remain. Do you know what is cephalic index was before and after (it would have been a % number in the 80s or 90s)? Did insurance pay? I would imagine based on what you have reported that he received all of the correction he could from the band. Do you think he has regressed? How far are you from CT? They will do a follow up for you no problem.

Baby B (breech plagio) - Did you discuss a 3rd band with CT? I think they really reserve that for when the parent is not happy. Initially were you happy with his results but have come to realize it's still more noticeable than you like or do you think he has regressed? A very small number of kids with "odd" shapes and severe plagio require a 3rd band. We've had a couple who are still active members, both had some regression and a period of time between bands 2 and 3. Do you have any pics from graduation that you could compare to today? How do they compare? He is still young enough to see correction from a 3rd band if you are unhappy with his headshape. My na had an inuterine constraint head. She still has a small flat spot on the left side near the top (not in the skull base though so considered cosmetic). She had 2 bands. Her ears are still out of alignment but went from 9mm to 4mm - big improvement

(imo). She was in a bands from 4 1/2 months to 8 1/2 months. She was in PT for her mild tort from 9 months to 13 months. We did at home from 3 months to 9 months. Our files section has some great tort tips you can use at home with active toddlers.

Torticollis Stretching.doc Stretching & Strengthening Tips

I would look at the exit pictures and compare to today (if you could psot some we could give opinions too). I would contact CT for a follow-up tell them you're worried about regression and not happy with their headshapes. If you decide to band again then push the dr until you get your rx. I got mine from my family dr (we don't see a ped). Would your ped be willing to write one for you?

HTH

mom to na

DOC grad

SCcc100103 <terimmartin@...> wrote:

I have been debating whether to join this group for a while and am very hopeful that I can get some solid advice and perhaps some peace of mind. I have twin boys that were banded with the DOC band when they were four months old. Baby "A" had mild tort and was diagnosed with brachy head...Baby "B" had moderate to severe tort and had the typical plagio with right side of head flat, ear misalignment, facial assymetry, etc...he was the breech baby for all of the pregnacy and received a lot of utero constraint. He has typical "breech head" and it was just magnified and made more severe with his tort and laying on his flat side constantly for the first few months of life. Both boys received PT since 4 months of age. Baby "A" wore his helmet for 7 weeks and received okay results with the band. I asked

the OT at Cranial Tech if he should need another band and she said no and I even asked her to ask the orthotist at the headquarters and they said he did not need another. He is now 12 1/2 months old and though not perfectly round (his head has rouned from looking at his profile but still looks a little "block headish" when looking straight at his back)...my husband and I hope with more hair and continued growth of his head that no one will be able to tell and that although it's not "perfect" he may grow out of it with time...his tort has been resolved for several months. Brother "B" wore two bands for five months(starting at four months)...he received partial correction to his asymetry and still is fairly flat on his right side. I think it may look more obvious because he has one ear larger (due to utero contraint) than the other and so it magnifies his asymmetry. He continues to get stretched with the

football hold 5-8x a day and goes to a PT every so often. I hve been a "freak" about regression from the day he got his helmet off and now that it's been 3 months after the band continue to be crazy about his head. Sometimes I think I clearly see a change for the worse and other times I think it's an optical illusion especially because his head was never fully corrected. We opted not to get a casting after his second band because it was so traumatic and we really thought we would never consider a third band. I continue to try to reposition him as much as I can because he does like to sleep on his flat side. My dilema is should I let it go and say we have done everything and with time,hair and head growth, no one will ever notice or should I continue to pursue helping him out. I so want to do the best thing for him and am regrettful that he did not receive as good of correction as I have seen

others receive especially getting the helmet and PT so early on. He is now a walking 12 1/2 month old toddler...I will continue PT until 18 months and will repo him when I can but what else can I do...should I let it go and hope for the best??? I know doctors would not support another band unless I made a huge stink of it and quite honetly why would it work now? Is there anyone out there that has seen improvement during the second year without any intervention except for what I mentioned above? I just feel alone because I don't really have any guidance especailly from the medical community which really never helped me from the beginning...should I just let it go?? Any success stories with babies looking better with time??? Sorry so long winded I just wanted to give as much detail as possible. Also could his partial correction be due to his breech head...anyone else with similar

circumstances??? Thanks.For more plagio info

October 20, 2004

--- In Plagiocephaly , " cc100103 " <terimmartin@b...>

wrote:

Sometimes I think I clearly

> see a change for the worse and other times I think it's an optical

> illusion especially because his head was never fully corrected.

We

> opted not to get a casting after his second band because it was so

> traumatic and we really thought we would never consider a third

> band.

Gosh, I could have written this myself a few months back!! Welcome

to the group. Our stories are somewhat similar, my daugher Hannah

had severe plagio that began inutero and wore 2 helmets from 4.5 mos

to 11 mos w/great correction. She never was at 100% either, but I

was told that the leftover assymetry she had was not correctable as

it was high up and also some was in the skull base. Her head had an

overall slant to it when looking at it from the front, but from the

top it looked good. I spoke w/Tim Littlefield from CT Corporate and

he explained that w/some inutero cases the bone actually forms in a

misshapen shape (as upposed to forming round and then being

misshapen by external forces). This makes it more difficult and

sometimes impossible to correct. A couple months later I starting

thinking i was going crazy and that Hannah's head was getting

worse. She was 11 mos at graduation though and never had tort, plus

w/regression happening to only 1%, I knew it was very unlikely. We

also had opted out of the exit cast, so couldn't go by that. I

contacted CT and they attempted to recreate her photos to the exact

angles her exit photos were taken at. You can see this comparison

in the photos/plagiokids/Hannah B folder. They did think she would

see correction from a third band, but I didn't think I could get a

script, etc. I talked to my ped who said, " you've been this far,

why stop just short of the finish line? " I thougth that put it

nicely and we went for it. Hannah got DOCBand #3 at 15 mos and wore

it for the full 16 wks. She got great results! Those pics are in

our photos/before and after/DOCband/Hannah B folder. I am so happy

we did it, even with the long travel, etc. I at least know that I

did all I could and won't have any regrets. Nobody can tell you for

sure if your son's head will improve at all or even get worse, so

you really have to be okay with that. If you think you might have

regrets down the road I would really urge you to look into another

helmet. Make an appt at CT and have his pics done again or

something. Do you have any current pics you could post to us?

Please keep us posted.

, mom to Hannah (22 mos), DOCgrad

Cape Cod, Ma

October 20, 2004

thanks for your reply and I will try to get CT to email me photos and take some

recent photos on my own...one question for you that I was unclear about did your

daughter actually regress prompting you to get another band or was it because

your were never happy with her head shape?

>

> From: " " <sarahhollis@...>

> Date: 2004/10/20 Wed AM 11:26:09 EDT

> Plagiocephaly

> Subject: Re: Need opinions and or advice