Re: Advice Needed - Don't know what to do!

July 15, 2009

Okay - I'm not sure what others are going to say, but I don't think that I see much difference in the Photostudy. What I do see is the head leaning to one side. Does he also have tort and is he getting PT or is there another explanation for this.

To be honest, I don't think that the head looks that bad to begin with and I see a little more length from the top view in the 2nd set of pictures. With the head tilting, it's hard to judge whether there's any change in the plagio. Sorry, I know this doesn't help much with your decision. If you'd like more change, then go for another band. Now is the time to do it. Yes, it's a lot of money. So, ask yourself whether it's worth spending it so that you won't have regrets later. If you don't think you'll have regrets later, then that's probably your answer.

Advice Needed - Don't know what to do!

Hi Everyone! I've been a part of this message board for about 2 months and have found it so helpful to read everyone else's stories/advice. Thank you! I haven't posted about my own situation until now because I really need some input and advice. My son Dean is now 7 months old and just graduated from his DOC band. He was only in it for about 8 weeks (possibly 7 1/2) before he outgrew it. He graduated on July 7th although I have to say I wasn't too excited because I really wasn't very happy with his head yet. He started out with 11mm plagio and I was told no brachy, although I always questioned that and asked about it many times..each time being told no brachy. Well, at his exit scan, I asked about it one more time and asked for his cephalic index...I was then told, oh yes, he did have brachy as well. His original CI was 91.7% - 3 std. dev. outside the norm. I saw the %age on the sheet, they only told me the std dev part. Now he is at 87%, one std dev. outside the norm. His plagio is 5mm assymetry. His numbers really aren't bad, but I'm really not happy with how his head looks. It's still very flat in the back, with noticable assymetry, and very tall on top. As many people have said on here, if you put a marble on his head, it would roll forward, easily! In fact, his exit photos are terrible and it looks like there was no progress. I will post them so you can take a look. Anyways, at the appt yesterday, after my pics, I asked to speak with the PT again because I really wasn't feeling satisfied. I wanted a little explanation as to what to do from this point. I asked if we should get another band (they didn't suggest it or say anything about it until I asked) and I was told it was my decision. She said some people get one and some don't with numbers like his. Insurance won't cover it though. He's still young so I know we can still get more correction, and he was only in the helmet for 8 weeks, but it's a HUGE investment and I'm not sure if I'm just overanalyzing this. Any help would be greatly appreciated. I feel very alone in this situation - my husband is supportive but the decision is pretty much mine. Thanks in advance! TraceyI'll post the pics under Dean K.

July 15, 2009

I can understand you being a bit dissatisfied with his results. My daughter has one more week in her band, for a total of 11 weeks (she will be 12 months on Sunday). While I do think her asymmetry (which was her major issue, her flatness was mild) looks better, it's definitely not completely correct and her ears are still off. Her head is flat across the back, but I was told that it was because of her fontanelle still being open back there. I'm not sure how true that is, but it hasn't changed. Her head did round out more at the bottom in the back (and I noticed that your son's did also), but I can't say that I am 100% happy with the results. We do not plan to go for another band, though. I wouldn't say that your son's head didn't look 'that bad' before, it's really all objective. My daughter's head shape was decent before, it was the ear and facial asymmetry that was more noticeable (mostly the ears) - but most people didn't notice it unless I pointed it out, and most people with children with severe Plagiocephaly didn't think it really looked that bad. All that matters is that YOU notice it - you see him everyday, so if YOU see it, you'll ALWAYS see it unless it self-corrects (which it may some, but probably not completely). That's why this is such a personal decision.

My daughter also has Torticollis, which it seems like your son does as well - has that been addressed?

I am still waiting for them to e-mail me her exit photos and measurements (manual.. the DSI was NOT happening), so I will post them when I get them, but her previous scans are under Mia.

Kim

On Wed, Jul 15, 2009 at 3:09 PM, <melanie.watson@...> wrote:

Okay - I'm not sure what others are going to say, but I don't think that I see much difference in the Photostudy. What I do see is the head leaning to one side. Does he also have tort and is he getting PT or is there another explanation for this.

To be honest, I don't think that the head looks that bad to begin with and I see a little more length from the top view in the 2nd set of pictures. With the head tilting, it's hard to judge whether there's any change in the plagio. Sorry, I know this doesn't help much with your decision. If you'd like more change, then go for another band. Now is the time to do it. Yes, it's a lot of money. So, ask yourself whether it's worth spending it so that you won't have regrets later. If you don't think you'll have regrets later, then that's probably your answer.

Advice Needed - Don't know what to do!

Hi Everyone! I've been a part of this message board for about 2 months and have found it so helpful to read everyone else's stories/advice. Thank you! I haven't posted about my own situation until now because I really need some input and advice. My son Dean is now 7 months old and just graduated from his DOC band. He was only in it for about 8 weeks (possibly 7 1/2) before he outgrew it. He graduated on July 7th although I have to say I wasn't too excited because I really wasn't very happy with his head yet. He started out with 11mm plagio and I was told no brachy, although I always questioned that and asked about it many times..each time being told no brachy. Well, at his exit scan, I asked about it one more time and asked for his cephalic index...I was then told, oh yes, he did have brachy as well. His original CI was 91.7% - 3 std. dev. outside the norm. I saw the %age on the sheet, they only told me the std dev part. Now he is at 87%, one std dev. outside the norm. His plagio is 5mm assymetry. His numbers really aren't bad, but I'm really not happy with how his head looks. It's still very flat in the back, with noticable assymetry, and very tall on top. As many people have said on here, if you put a marble on his head, it would roll forward, easily! In fact, his exit photos are terrible and it looks like there was no progress. I will post them so you can take a look. Anyways, at the appt yesterday, after my pics, I asked to speak with the PT again because I really wasn't feeling satisfied. I wanted a little explanation as to what to do from this point. I asked if we should get another band (they didn't suggest it or say anything about it until I asked) and I was told it was my decision. She said some people get one and some don't with numbers like his. Insurance won't cover it though. He's still young so I know we can still get more correction, and he was only in the helmet for 8 weeks, but it's a HUGE investment and I'm not sure if I'm just overanalyzing this. Any help would be greatly appreciated. I feel very alone in this situation - my husband is supportive but the decision is pretty much mine. Thanks in advance!

TraceyI'll post the pics under Dean K.

July 15, 2009

I also meant to say that if you don't understand where the progress is, I would definitely ask for another appointment. While his treatment time may soon be up, you're paying for a service - so if you're not satisfied, they should be able to sit down with you and explain where he improved or didn't and why or why not (did he have very slow growth, etc).

Kim

On Wed, Jul 15, 2009 at 7:31 PM, K S <trying4two@...> wrote:

I can understand you being a bit dissatisfied with his results. My daughter has one more week in her band, for a total of 11 weeks (she will be 12 months on Sunday). While I do think her asymmetry (which was her major issue, her flatness was mild) looks better, it's definitely not completely correct and her ears are still off. Her head is flat across the back, but I was told that it was because of her fontanelle still being open back there. I'm not sure how true that is, but it hasn't changed. Her head did round out more at the bottom in the back (and I noticed that your son's did also), but I can't say that I am 100% happy with the results. We do not plan to go for another band, though. I wouldn't say that your son's head didn't look 'that bad' before, it's really all objective. My daughter's head shape was decent before, it was the ear and facial asymmetry that was more noticeable (mostly the ears) - but most people didn't notice it unless I pointed it out, and most people with children with severe Plagiocephaly didn't think it really looked that bad. All that matters is that YOU notice it - you see him everyday, so if YOU see it, you'll ALWAYS see it unless it self-corrects (which it may some, but probably not completely). That's why this is such a personal decision.

My daughter also has Torticollis, which it seems like your son does as well - has that been addressed?

I am still waiting for them to e-mail me her exit photos and measurements (manual.. the DSI was NOT happening), so I will post them when I get them, but her previous scans are under Mia.

Kim

On Wed, Jul 15, 2009 at 3:09 PM, <melanie.watson@...> wrote:

Okay - I'm not sure what others are going to say, but I don't think that I see much difference in the Photostudy. What I do see is the head leaning to one side. Does he also have tort and is he getting PT or is there another explanation for this.

To be honest, I don't think that the head looks that bad to begin with and I see a little more length from the top view in the 2nd set of pictures. With the head tilting, it's hard to judge whether there's any change in the plagio. Sorry, I know this doesn't help much with your decision. If you'd like more change, then go for another band. Now is the time to do it. Yes, it's a lot of money. So, ask yourself whether it's worth spending it so that you won't have regrets later. If you don't think you'll have regrets later, then that's probably your answer.

Advice Needed - Don't know what to do!

Hi Everyone! I've been a part of this message board for about 2 months and have found it so helpful to read everyone else's stories/advice. Thank you! I haven't posted about my own situation until now because I really need some input and advice. My son Dean is now 7 months old and just graduated from his DOC band. He was only in it for about 8 weeks (possibly 7 1/2) before he outgrew it. He graduated on July 7th although I have to say I wasn't too excited because I really wasn't very happy with his head yet. He started out with 11mm plagio and I was told no brachy, although I always questioned that and asked about it many times..each time being told no brachy. Well, at his exit scan, I asked about it one more time and asked for his cephalic index...I was then told, oh yes, he did have brachy as well. His original CI was 91.7% - 3 std. dev. outside the norm. I saw the %age on the sheet, they only told me the std dev part. Now he is at 87%, one std dev. outside the norm. His plagio is 5mm assymetry. His numbers really aren't bad, but I'm really not happy with how his head looks. It's still very flat in the back, with noticable assymetry, and very tall on top. As many people have said on here, if you put a marble on his head, it would roll forward, easily! In fact, his exit photos are terrible and it looks like there was no progress. I will post them so you can take a look. Anyways, at the appt yesterday, after my pics, I asked to speak with the PT again because I really wasn't feeling satisfied. I wanted a little explanation as to what to do from this point. I asked if we should get another band (they didn't suggest it or say anything about it until I asked) and I was told it was my decision. She said some people get one and some don't with numbers like his. Insurance won't cover it though. He's still young so I know we can still get more correction, and he was only in the helmet for 8 weeks, but it's a HUGE investment and I'm not sure if I'm just overanalyzing this. Any help would be greatly appreciated. I feel very alone in this situation - my husband is supportive but the decision is pretty much mine. Thanks in advance!

TraceyI'll post the pics under Dean K.

July 15, 2009

He does have tort as well - he's in physical therapy for it. In fact, the

physical therapist just told me last week that she thinks it's almost resolved

and he probably only needs a few more visits. From his exit photos, I would say

not at all! I'm going to show her those pics at his next appointment.

I really appreciate all of your honest input. I really need people to tell me

what they truly think, not what I want to hear. My family thinks his head looks

better, but I think that's because it's suppossed to look better, not because it

necessarily does. I'm going to email my clinic tomorrow, specifically the PT

that I didn't see at my exit scan. I'm going to addresss the fact that I see

little to no progress and the fact that he only wore his helmet for 7 weeks and

3 days. That seems like a really short amount of time to me. I just feel like

we paid all this money for 7 short weeks and had very little progress. I'm not

blaming anyone, of course, I'm just so frustrated.

> >

> >>

> >> Okay - I'm not sure what others are going to say, but I don't think that

> >> I see much difference in the Photostudy. What I do see is the head leaning

> >> to one side. Does he also have tort and is he getting PT or is there

another

> >> explanation for this.

> >>

> >> To be honest, I don't think that the head looks that bad to begin with and

> >> I see a little more length from the top view in the 2nd set of pictures.

> >> With the head tilting, it's hard to judge whether there's any change in the

> >> plagio. Sorry, I know this doesn't help much with your decision. If you'd

> >> like more change, then go for another band. Now is the time to do it. Yes,

> >> it's a lot of money. So, ask yourself whether it's worth spending it so

that

> >> you won't have regrets later. If you don't think you'll have regrets later,

> >> then that's probably your answer.

> >>

> >> [image: Lilypie Baby Ticker]<http://lilypie.com/4th_birthday.php?e=aHcC>

> >> [image: Lilypie Baby

Ticker]<http://lilypie.com/second_birthday.php?e=34bH>

> >> [image: Lilypie Baby

Ticker]<http://lilypie.com/breastfeeding_mini.php?e=hbPE>

> >>

> >> Advice Needed - Don't know what to do!

> >>

> >> Hi Everyone! I've been a part of this message board for about 2 months and

> >> have found it so helpful to read everyone else's stories/advice. Thank you!

> >> I haven't posted about my own situation until now because I really need

some

> >> input and advice. My son Dean is now 7 months old and just graduated from

> >> his DOC band. He was only in it for about 8 weeks (possibly 7 1/2) before

he

> >> outgrew it. He graduated on July 7th although I have to say I wasn't too

> >> excited because I really wasn't very happy with his head yet. He started

out

> >> with 11mm plagio and I was told no brachy, although I always questioned

that

> >> and asked about it many times..each time being told no brachy. Well, at his

> >> exit scan, I asked about it one more time and asked for his cephalic

> >> index...I was then told, oh yes, he did have brachy as well. His original

CI

> >> was 91.7% - 3 std. dev. outside the norm. I saw the %age on the sheet, they

> >> only told me the std dev part. Now he is at 87%, one std dev. outside the

> >> norm. His plagio is 5mm assymetry. His numbers really aren't bad, but I'm

> >> really not happy with how his head looks. It's still very flat in the back,

> >> with noticable assymetry, and very tall on top. As many people have said on

> >> here, if you put a marble on his head, it would roll forward, easily! In

> >> fact, his exit photos are terrible and it looks like there was no progress.

> >> I will post them so you can take a look. Anyways, at the appt yesterday,

> >> after my pics, I asked to speak with the PT again because I really wasn't

> >> feeling satisfied. I wanted a little explanation as to what to do from this

> >> point. I asked if we should get another band (they didn't suggest it or say

> >> anything about it until I asked) and I was told it was my decision. She

said

> >> some people get one and some don't with numbers like his. Insurance won't

> >> cover it though. He's still young so I know we can still get more

> >> correction, and he was only in the helmet for 8 weeks, but it's a HUGE

> >> investment and I'm not sure if I'm just overanalyzing this. Any help would

> >> be greatly appreciated. I feel very alone in this situation - my husband is

> >> supportive but the decision is pretty much mine. Thanks in advance!

> >> Tracey

> >> I'll post the pics under Dean K.

> >>

> >

>

July 16, 2009

FWIW, I had the exact same impression as the post below. First, the head

doesn't look too bad. The most noticeable part is the head leaning to the right

which seems more like tort. But unfortunately, I agree, from the before and

after pics, I didn't see much difference.

But good luck with whatever decision you make. Our kid has severe brachy (92%

CI) and our doc told us that it was a borderline call. Our friends and family

say they can't tell that there's anything wrong, but we figured we'll err on the

side of caution and give the band a shot. We don't want to have regrets and want

to know we did everything we could.

>

> Okay - I'm not sure what others are going to say, but I don't think that I see

much difference in the Photostudy. What I do see is the head leaning to one

side. Does he also have tort and is he getting PT or is there another

explanation for this.

>

> To be honest, I don't think that the head looks that bad to begin with and I

see a little more length from the top view in the 2nd set of pictures. With the

head tilting, it's hard to judge whether there's any change in the plagio.

Sorry, I know this doesn't help much with your decision. If you'd like more

change, then go for another band. Now is the time to do it. Yes, it's a lot of

money. So, ask yourself whether it's worth spending it so that you won't have

regrets later. If you don't think you'll have regrets later, then that's

probably your answer.

>

> Lilypie Baby TickerÂ Lilypie Baby TickerÂ Lilypie Baby Ticker

>

> Advice Needed - Don't know what to do!

>

> Hi Everyone! I've been a part of this message board for about 2 months and

have found it so helpful to read everyone else's stories/advice. Thank you! I

haven't posted about my own situation until now because I really need some input

and advice. My son Dean is now 7 months old and just graduated from his DOC

band. He was only in it for about 8 weeks (possibly 7 1/2) before he outgrew it.

He graduated on July 7th although I have to say I wasn't too excited because I

really wasn't very happy with his head yet. He started out with 11mm plagio and

I was told no brachy, although I always questioned that and asked about it many

times..each time being told no brachy. Well, at his exit scan, I asked about it

one more time and asked for his cephalic index...I was then told, oh yes, he did

have brachy as well. His original CI was 91.7% - 3 std. dev. outside the norm. I

saw the %age on the sheet, they only told me the std dev part. Now he is at 87%,

one std dev. outside the norm. His plagio is 5mm assymetry. His numbers really

aren't bad, but I'm really not happy with how his head looks. It's still very

flat in the back, with noticable assymetry, and very tall on top. As many people

have said on here, if you put a marble on his head, it would roll forward,

easily! In fact, his exit photos are terrible and it looks like there was no

progress. I will post them so you can take a look. Anyways, at the appt

yesterday, after my pics, I asked to speak with the PT again because I really

wasn't feeling satisfied. I wanted a little explanation as to what to do from

this point. I asked if we should get another band (they didn't suggest it or say

anything about it until I asked) and I was told it was my decision. She said

some people get one and some don't with numbers like his. Insurance won't cover

it though. He's still young so I know we can still get more correction, and he

was only in the helmet for 8 weeks, but it's a HUGE investment and I'm not sure

if I'm just overanalyzing this. Any help would be greatly appreciated. I feel

very alone in this situation - my husband is supportive but the decision is

pretty much mine. Thanks in advance!

> Tracey

> I'll post the pics under Dean K.

>

July 16, 2009

I spoke to the therapist at cranial tech today, the one who I didn't see the

last time I was there. She said that according to her notes, she was happy with

his progress all along, but hadn't seen him in the end. She said she was going

to have a mold poured of his head from his last scan and we would come in for

another appointment. She said it's difficult to really assess the head from a 2

dimensional point of view. Other than using the head mold to compare, what will

this accomplish? Do they make the bands from the head molds or do they send out

for the bands? Since the mold won't be in for about 10 days, if we do decide on

a second band, do we then have to have another DSI done and wait another 10

days? Perhaps I should call back and try to get her on the phone again. Now I'm

more confused...

> > >

> > >>

> > >> Okay - I'm not sure what others are going to say, but I don't think that

> > >> I see much difference in the Photostudy. What I do see is the head

leaning

> > >> to one side. Does he also have tort and is he getting PT or is there

another

> > >> explanation for this.

> > >>

> > >> To be honest, I don't think that the head looks that bad to begin with

and

> > >> I see a little more length from the top view in the 2nd set of pictures.

> > >> With the head tilting, it's hard to judge whether there's any change in

the

> > >> plagio. Sorry, I know this doesn't help much with your decision. If you'd

> > >> like more change, then go for another band. Now is the time to do it.

Yes,

> > >> it's a lot of money. So, ask yourself whether it's worth spending it so

that

> > >> you won't have regrets later. If you don't think you'll have regrets

later,

> > >> then that's probably your answer.

> > >>

> > >> [image: Lilypie Baby

Ticker]<http://lilypie.com/4th_birthday.php?e=aHcC>

> > >> [image: Lilypie Baby

Ticker]<http://lilypie.com/second_birthday.php?e=34bH>

> > >> [image: Lilypie Baby

Ticker]<http://lilypie.com/breastfeeding_mini.php?e=hbPE>

> > >>

> > >> Advice Needed - Don't know what to do!

> > >>

> > >> Hi Everyone! I've been a part of this message board for about 2 months

and

> > >> have found it so helpful to read everyone else's stories/advice. Thank

you!

> > >> I haven't posted about my own situation until now because I really need

some

> > >> input and advice. My son Dean is now 7 months old and just graduated from

> > >> his DOC band. He was only in it for about 8 weeks (possibly 7 1/2) before

he

> > >> outgrew it. He graduated on July 7th although I have to say I wasn't too

> > >> excited because I really wasn't very happy with his head yet. He started

out

> > >> with 11mm plagio and I was told no brachy, although I always questioned

that

> > >> and asked about it many times..each time being told no brachy. Well, at

his

> > >> exit scan, I asked about it one more time and asked for his cephalic

> > >> index...I was then told, oh yes, he did have brachy as well. His original

CI

> > >> was 91.7% - 3 std. dev. outside the norm. I saw the %age on the sheet,

they

> > >> only told me the std dev part. Now he is at 87%, one std dev. outside the

> > >> norm. His plagio is 5mm assymetry. His numbers really aren't bad, but I'm

> > >> really not happy with how his head looks. It's still very flat in the

back,

> > >> with noticable assymetry, and very tall on top. As many people have said

on

> > >> here, if you put a marble on his head, it would roll forward, easily! In

> > >> fact, his exit photos are terrible and it looks like there was no

progress.

> > >> I will post them so you can take a look. Anyways, at the appt yesterday,

> > >> after my pics, I asked to speak with the PT again because I really wasn't

> > >> feeling satisfied. I wanted a little explanation as to what to do from

this

> > >> point. I asked if we should get another band (they didn't suggest it or

say

> > >> anything about it until I asked) and I was told it was my decision. She

said

> > >> some people get one and some don't with numbers like his. Insurance won't

> > >> cover it though. He's still young so I know we can still get more

> > >> correction, and he was only in the helmet for 8 weeks, but it's a HUGE

> > >> investment and I'm not sure if I'm just overanalyzing this. Any help

would

> > >> be greatly appreciated. I feel very alone in this situation - my husband

is

> > >> supportive but the decision is pretty much mine. Thanks in advance!

> > >> Tracey

> > >> I'll post the pics under Dean K.

> > >>

> > >

> >

>

July 16, 2009

I definitely don't think the tort is resolved.. it's identical in the before and after photos!Mia has outgrown her band at 11 weeks because the areas where she needed room are completely shaven down to the plastic. The areas that were never adjusted are obviously still full of foam. I wish that she could have a little more time in it (the irony in that is amazing!) - but we're not going with a second band. She has had improvement, just not as much as I hoped - but in your case, I don't really see much improvement (except the bottom back is more filled out) - so I would really be curious why they think this is the case and if they don't think he needs a second band at this point (when his head essentially looks the same), why would they think he ever needed one before? Please update when you hear back!

KimOn Wed, Jul 15, 2009 at 9:46 PM, traceymichaels <traceymichaels@...> wrote:

He does have tort as well - he's in physical therapy for it. In fact, the physical therapist just told me last week that she thinks it's almost resolved and he probably only needs a few more visits. From his exit photos, I would say not at all! I'm going to show her those pics at his next appointment.

I really appreciate all of your honest input. I really need people to tell me what they truly think, not what I want to hear. My family thinks his head looks better, but I think that's because it's suppossed to look better, not because it necessarily does. I'm going to email my clinic tomorrow, specifically the PT that I didn't see at my exit scan. I'm going to addresss the fact that I see little to no progress and the fact that he only wore his helmet for 7 weeks and 3 days. That seems like a really short amount of time to me. I just feel like we paid all this money for 7 short weeks and had very little progress. I'm not blaming anyone, of course, I'm just so frustrated.

> >

> >>

> >> Okay - I'm not sure what others are going to say, but I don't think that

> >> I see much difference in the Photostudy. What I do see is the head leaning

> >> to one side. Does he also have tort and is he getting PT or is there another

> >> explanation for this.

> >>

> >> To be honest, I don't think that the head looks that bad to begin with and

> >> I see a little more length from the top view in the 2nd set of pictures.

> >> With the head tilting, it's hard to judge whether there's any change in the

> >> plagio. Sorry, I know this doesn't help much with your decision. If you'd

> >> like more change, then go for another band. Now is the time to do it. Yes,

> >> it's a lot of money. So, ask yourself whether it's worth spending it so that

> >> you won't have regrets later. If you don't think you'll have regrets later,

> >> then that's probably your answer.

> >>

> >> [image: Lilypie Baby Ticker]<http://lilypie.com/4th_birthday.php?e=aHcC>

> >> [image: Lilypie Baby Ticker]<http://lilypie.com/second_birthday.php?e=34bH>

> >> [image: Lilypie Baby Ticker]<http://lilypie.com/breastfeeding_mini.php?e=hbPE>

> >>

> >> Advice Needed - Don't know what to do!

> >>

> >> Hi Everyone! I've been a part of this message board for about 2 months and

> >> have found it so helpful to read everyone else's stories/advice. Thank you!

> >> I haven't posted about my own situation until now because I really need some

> >> input and advice. My son Dean is now 7 months old and just graduated from

> >> his DOC band. He was only in it for about 8 weeks (possibly 7 1/2) before he

> >> outgrew it. He graduated on July 7th although I have to say I wasn't too

> >> excited because I really wasn't very happy with his head yet. He started out

> >> with 11mm plagio and I was told no brachy, although I always questioned that

> >> and asked about it many times..each time being told no brachy. Well, at his

> >> exit scan, I asked about it one more time and asked for his cephalic

> >> index...I was then told, oh yes, he did have brachy as well. His original CI