scaphocephaly

[Guest guest]

I'm new to the group and glad you guys are here!! My daughter is 3

months old and her head shape matches scaphocephaly (no one has

officially told me this, it just seems obvious to me when I look at

pictures). Our pediatrician did order CT to rule out

craniosynostosis and when that came back negative she just said to

make sure she's sleeping on her side opposite the asymmetry. On our

own we initiated PT for mild torticolis. I have scheduled a consult

with the cranial technologies clinic in Clinton, CT. I'm wondering

what are other families experience with using the band for

scaphocephaly or what are other treatments. Also should I be

concerned about something else it seems to be a rare head shape, our

pediatrician thought the craniosynostosis was the only serious thing

to rule out. Pediatrician also said her head would grow around it? Is

that possible? Repositioning isn't going to help a bulge in the back

of her head It seems like she'll just end up with flat sides! It

almost seems more noticeable to me since her neck movement is getting

better- She gets to midline holds it for a little while but can't

balance her head so it flops to one side or the other now. I will

stop rambling-just want to be sure I am doing all I should for our

daughter. Thank you to everyone for being here!

[Guest guest]

Hi,

Welcome to the group! Your pediatrician is wrong, repositioning won't

correct scaphocephaly. It is highly unlikely that her head will round

out on it's own. I think you're doing the best thing possible for

your daughter, by looking into banding. We have a few parents here

who have babies with scaphocephaly, I'm sure they'll tell you all

about their experiences. When is your consult with Cranial Tech?

You're very lucky that your baby is still so young. If you chose to

band she will receive awesome correction.

Keep us posted.

> I'm new to the group and glad you guys are here!! My daughter is 3

> months old and her head shape matches scaphocephaly (no one has

> officially told me this, it just seems obvious to me when I look at

> pictures). Our pediatrician did order CT to rule out

> craniosynostosis and when that came back negative she just said to

> make sure she's sleeping on her side opposite the asymmetry. On

our

> own we initiated PT for mild torticolis. I have scheduled a

consult

> with the cranial technologies clinic in Clinton, CT. I'm wondering

> what are other families experience with using the band for

> scaphocephaly or what are other treatments. Also should I be

> concerned about something else it seems to be a rare head shape,

our

> pediatrician thought the craniosynostosis was the only serious

thing

> to rule out. Pediatrician also said her head would grow around it?

Is

> that possible? Repositioning isn't going to help a bulge in the

back

> of her head It seems like she'll just end up with flat sides! It

> almost seems more noticeable to me since her neck movement is

getting

> better- She gets to midline holds it for a little while but can't

> balance her head so it flops to one side or the other now. I will

> stop rambling-just want to be sure I am doing all I should for our

> daughter. Thank you to everyone for being here!

[Guest guest]

,

Hang in there you are doing the right thing by gathering more information and educating yourself. I don't know much about scaphocephaly. My daughter has plagio and it was caused inutero. Ellen is very young and should see excellent correction with a band.

Welcome to the group and keep us posted.

na/DOC/6 days/SC/4.5 mos

Re: scaphocephaly

My daughter's name is Ellen and we live in Westfield, MA. I had a full term pregnancy with Ellen, The only factors that may have contributed are I have been told I have a retroverted uterus and I had migraines and pretty intense prodermal labor for two weeks prior to my delivery (migraines, vomitting with contractions a few days/wk)But no one ever mentioned her head shape and even at two months it was my husband and sister (both physical therapists) that encouraged me to question our pediatrician. I am so glad they did. I feel a bit guilty because I am a pediatric speech pathologist and should have recognized signs but I was a total mom in denial when my husband first started commenting about how her neck was tight and the "bulge" in the back of her head. We have two other children (5 and 2)and I would say "they're not going to be the same". Our pediatrician wouldn't have recommended anything even when I directly pointed out my husband's and sister's concern. the pediatrician added well one ear is a bit anterior and I see the difference in her eye but we can wait. So I said we can't wait and pushed for atleast the CT scan. Now I've done the rest on my own and I am going to get a referral to the craniofacial clinic at Yale just to be sure we're covering all of our bases. Well I've gone on too long, but it is nice to tell people who I am sure have had similiar experiences. Thanks for all the replies, in Westfield, MA> > I'm new to the group and glad you guys are here!! My daughter is > 3 > > months old and her head shape matches scaphocephaly (no one has > > officially told me this, it just seems obvious to me when I look > at > > pictures). Our pediatrician did order CT to rule out > > craniosynostosis and when that came back negative she just said to > > make sure she's sleeping on her side opposite the asymmetry. On > our > > own we initiated PT for mild torticolis. I have scheduled a > consult > > with the cranial technologies clinic in Clinton, CT. I'm > wondering > > what are other families experience with using the band for > > scaphocephaly or what are other treatments. Also should I be > > concerned about something else it seems to be a rare head shape, > our > > pediatrician thought the craniosynostosis was the only serious > thing > > to rule out. Pediatrician also said her head would grow around it? > Is > > that possible? Repositioning isn't going to help a bulge in the > back > > of her head It seems like she'll just end up with flat sides! It > > almost seems more noticeable to me since her neck movement is > getting > > better- She gets to midline holds it for a little while but can't > > balance her head so it flops to one side or the other now. I will > > stop rambling-just want to be sure I am doing all I should for our > > daughter. Thank you to everyone for being here!For more plagio info

[Guest guest]

My daughter's name is Ellen and we live in Westfield, MA. I had a

full term pregnancy with Ellen, The only factors that may have

contributed are I have been told I have a retroverted uterus and I

had migraines and pretty intense prodermal labor for two weeks prior

to my delivery (migraines, vomitting with contractions a few days/wk)

But no one ever mentioned her head shape and even at two months it

was my husband and sister (both physical therapists) that encouraged

me to question our pediatrician. I am so glad they did. I feel a

bit guilty because I am a pediatric speech pathologist and should

have recognized signs but I was a total mom in denial when my husband

first started commenting about how her neck was tight and the " bulge "

in the back of her head. We have two other children (5 and 2)and I

would say " they're not going to be the same " . Our pediatrician

wouldn't have recommended anything even when I directly pointed out

my husband's and sister's concern. the pediatrician added well one

ear is a bit anterior and I see the difference in her eye but we can

wait. So I said we can't wait and pushed for atleast the CT scan.

Now I've done the rest on my own and I am going to get a referral to

the craniofacial clinic at Yale just to be sure we're covering all of

our bases. Well I've gone on too long, but it is nice to tell people

who I am sure have had similiar experiences. Thanks for all the

replies, in Westfield, MA

> > I'm new to the group and glad you guys are here!! My daughter is

> 3

> > months old and her head shape matches scaphocephaly (no one has

> > officially told me this, it just seems obvious to me when I look

> at

> > pictures). Our pediatrician did order CT to rule out

> > craniosynostosis and when that came back negative she just said

to

> > make sure she's sleeping on her side opposite the asymmetry. On

> our

> > own we initiated PT for mild torticolis. I have scheduled a

> consult

> > with the cranial technologies clinic in Clinton, CT. I'm

> wondering

> > what are other families experience with using the band for

> > scaphocephaly or what are other treatments. Also should I be

> > concerned about something else it seems to be a rare head shape,

> our

> > pediatrician thought the craniosynostosis was the only serious

> thing

> > to rule out. Pediatrician also said her head would grow around

it?

> Is

> > that possible? Repositioning isn't going to help a bulge in the

> back

> > of her head It seems like she'll just end up with flat sides! It

> > almost seems more noticeable to me since her neck movement is

> getting

> > better- She gets to midline holds it for a little while but can't

> > balance her head so it flops to one side or the other now. I will

> > stop rambling-just want to be sure I am doing all I should for

our

> > daughter. Thank you to everyone for being here!

[Guest guest]

, I'm glad you found your way over here! As I told you on

the CT board about 's story, Lorenzo (in the photo section)

wasn't a preemie, his was due to how he would always sleep and he

rec'd wonderful correction. There are also pictures of B & A for

you to see. I'm sorry but there are not any pictures of babies with

Scaphy that didn't use the band. Good luck in your decision to band

or not. I hope the pictures help you with your decision. Let us

know what CT had to say about your daughter.

Dustie, mom to , DOCGrad'03

> I'm new to the group and glad you guys are here!! My daughter is 3

> months old and her head shape matches scaphocephaly (no one has

> officially told me this, it just seems obvious to me when I look at

> pictures). Our pediatrician did order CT to rule out

> craniosynostosis and when that came back negative she just said to

> make sure she's sleeping on her side opposite the asymmetry. On

our

> own we initiated PT for mild torticolis. I have scheduled a

consult

> with the cranial technologies clinic in Clinton, CT. I'm wondering

> what are other families experience with using the band for

> scaphocephaly or what are other treatments. Also should I be

> concerned about something else it seems to be a rare head shape,

our

> pediatrician thought the craniosynostosis was the only serious

thing

> to rule out. Pediatrician also said her head would grow around it?

Is

> that possible? Repositioning isn't going to help a bulge in the

back

> of her head It seems like she'll just end up with flat sides! It

> almost seems more noticeable to me since her neck movement is

getting

> better- She gets to midline holds it for a little while but can't

> balance her head so it flops to one side or the other now. I will

> stop rambling-just want to be sure I am doing all I should for our

> daughter. Thank you to everyone for being here!

[Guest guest]

Hi,

My son was diagnosed with mild/moderate plagiocephaly at 11.5 months

and we started helmet treatment at 12 months. I don't know whether the

treatment outcome for scaphocephaly is similar. My son is now 14.5

months. Visually we have gotten slow steady improvement. Everything

I read says you can only get partial correction in the second year.

I'm still extremely worried about this; however, I am not totally

convinced that it is true. I am still really hoping for correction to

within normal range so that the plagio in visually unnoticeable except

for swimming and baths. I would expect that your child can be treated

as well.

Other people on this list probably know more.

Good luck!

Kathy, mom to 14.5 months, Starband for plagio

lsherrmann wrote:

Hi - I just found out my 12 month old has scaphocephaly. We are

going to childrens hospital next week to see a specialist. Has anyone

been treated at 1 year? Everthing i have been reading people have

caught this at around 3 months of age?

Thanks - Lori Ann

[Guest guest]

Hi Lori Ann-

My son began treatment for his plagiocephaly at 17 months of age and wore 2

DOCBands for nearly 8 months. We got a lot of great correction, although his

head is still not perfectly round. It is much better and at least we did what we

could. I think starting at 12 months is worth trying. I haven't heard about a

lot of scapho cases on this board (for sure none that started after 1 year), so

I can't say for sure, but I would hope your chances of seeing improvement would

be the same as an older baby with plagio or brachy. Was there a specific reason

for the delay in the diagnosis? We were told at 4 months old that my son

wouldn't need a helmet and that it would round out on it's own, but it didn't so

I finally pushed for a prescription much later than I should have.

My son's before and after photos are in the Older Plagio Kids folder under Jake

W.

Good luck!

Jake-2.5 (DOCBand Grad 9/08)

Jordan-5.5

>

> Hi - I just found out my 12 month old has scaphocephaly. We are going to

childrens hospital next week to see a specialist. Has anyone been treated at 1

year? Everthing i have been reading people have caught this at around 3 months

of age?

>

> Thanks - Lori Ann

>

[Guest guest]

My daughter's referral process for her brachycelphaly started at 12.5 months and she was in her band until 14.5 months. She did get good improvement, but not total correction. There is a difference between banding at 12 months and 14.5 months. For the bands to work, there has to be growth. Growth slows down at a year and then again around 18 months. So, I'd say that the more time you have in the first half of the second year, the more chance you have for improvement. Brachy is harder to treat than plagio. I'm not sure about scapho since most of the babies on this board have had either brachy or plagio.

Anyway, I am completely convinced that if we had gotten in her band at 12 months, we would have gotten twice the improvement that we did and I wouldn't be still seeking out alternative treatment options. That said, we did get good enough improvement that it's not visible to the untrained eye until she gets her hair wet.

So, go ahead a follow through with treatment. It is not too late. There are also others here who can tell you the same thing.

, mom to , 23.5 months

STARband grad (from 14.5 to 20.5 months)

Currently doing CST

land

Re: Scaphocephaly

Hi,My son was diagnosed with mild/moderate plagiocephaly at 11.5 months and we started helmet treatment at 12 months. I don't know whether the treatment outcome for scaphocephaly is similar. My son is now 14.5 months. Visually we have gotten slow steady improvement. Everything I read says you can only get partial correction in the second year. I'm still extremely worried about this; however, I am not totally convinced that it is true. I am still really hoping for correction to within normal range so that the plagio in visually unnoticeable except for swimming and baths. I would expect that your child can be treated as well.Other people on this list probably know more.Good luck!Kathy, mom to 14.5 months, Starband for plagiolsherrmann wrote:

Hi - I just found out my 12 month old has scaphocephaly. We are going to childrens hospital next week to see a specialist. Has anyone been treated at 1 year? Everthing i have been reading people have caught this at around 3 months of age?Thanks - Lori Ann

[Guest guest]

Hi Lori ann,

The scaphy head shape is less common, but I would think the helmet/band would

still be effective after 12 mo (as with plagio and brachy). When you do get to

an ortho check how much experience they have with scaphy. Where do you live?

Maybe someone has local experience.

-christine

sydney, 3.5 yrs, starband grad

>

> Hi - I just found out my 12 month old has scaphocephaly. We are going to

childrens hospital next week to see a specialist. Has anyone been treated at 1

year? Everthing i have been reading people have caught this at around 3 months

of age?

>

> Thanks - Lori Ann

>

[Guest guest]

-Hi ,

I live in foxboro, ma.

Loriann

-- In Plagiocephaly , " christineashok " <christineashok@...>

wrote:

>

> Hi Lori ann,

> The scaphy head shape is less common, but I would think the helmet/band would

still be effective after 12 mo (as with plagio and brachy). When you do get to

an ortho check how much experience they have with scaphy. Where do you live?

Maybe someone has local experience.

> -christine

> sydney, 3.5 yrs, starband grad

>

>

> >

> > Hi - I just found out my 12 month old has scaphocephaly. We are going to

childrens hospital next week to see a specialist. Has anyone been treated at 1

year? Everthing i have been reading people have caught this at around 3 months

of age?

> >

> > Thanks - Lori Ann

> >

>

[Guest guest]

Hi ,

I have questioned my son's head since birth and the doctor kept telling me we will watch it and make sure it keeps growing, and that he was fine. I had trusted my doctor and his head has filled in a little bit. But then someone asked me if my sons head was ok a few weeks ago and mentioned to me i should look up helmets, so I did and boy what i was reading made me scared so I insisted with his dr. to have a xray done and the results came back (his dr. doesn't know yet - shes on vaca) and the office set up the appt with the specialist for this coming friday. I am so upset with myself for not asking more questions - i feel like some of this is my fault.

Thanks - Loriann

From: <nwilkens2275@...>Subject: Re: ScaphocephalyPlagiocephaly Date: Friday, August 14, 2009, 3:45 PM

Hi Lori Ann-My son began treatment for his plagiocephaly at 17 months of age and wore 2 DOCBands for nearly 8 months. We got a lot of great correction, although his head is still not perfectly round. It is much better and at least we did what we could. I think starting at 12 months is worth trying. I haven't heard about a lot of scapho cases on this board (for sure none that started after 1 year), so I can't say for sure, but I would hope your chances of seeing improvement would be the same as an older baby with plagio or brachy. Was there a specific reason for the delay in the diagnosis? We were told at 4 months old that my son wouldn't need a helmet and that it would round out on it's own, but it didn't so I finally pushed for a prescription much later than I should have. My son's before and after photos are in the Older Plagio Kids folder under Jake W. Good luck!Jake-2.5 (DOCBand Grad

9/08)Jordan-5.5>> Hi - I just found out my 12 month old has scaphocephaly. We are going to childrens hospital next week to see a specialist. Has anyone been treated at 1 year? Everthing i have been reading people have caught this at around 3 months of age?> > Thanks - Lori Ann>