Re: update 23 mos old starband

[Guest guest]

Hi ,

I would be bothered too by a lot of this! Our ortho always answers our

questions clearly. As the asymmetry improves on , the back also

rounds out.

I wouldn't worry about going 5 weeks without measurements at this age.

We are going 6.5 weeks this time. The ortho said 6. I used to be

scared this was too long, but when I go in too soon I am sometimes

disappointed because the numbers actually get worse from measurement

error. Just watch for deep red spots that don't go away.

I might wait until your next scan to decide what to do. We ask for

printouts of the contours at level 3 and level 5 and I study them

carefully. So, far the helmet is helping very slowly with the back of

's head and not causing any harm that I can tell. Also, we study

's head to look for visual changes. So far the back is very slowly

rounding out and the asymmetry between the left and right decreasing.

Do you see any changes? You could try asking others too if they see

any improvement. At this age it is very, very slow.

The helmet hitting the ears, especially the right, bothers me also!

's right ear looks kind of curled around, but it was that way

before the helmet. We are trying an ear splint on the right ear, but

I'm not sure it helps. Our nanny suggested having sleep with a

hat covering his ears once we take the helmet off.

Let us know what happens.

Kathy, mom to , 18.5 months, 6 months in Starband

wrote:

is now 23 mos old (20 adj), starband for 5 mos now.

Yesterday we saw his ortho. She usually sees him every 3 wks. Yesterday

it was 2 wks instead because I thought his helmet was maybe rubbing on

his right ear and requested an appt for this week. She as usual laughed

at my concerns.

I'll remind everybody that 's plagio is mild and because of that

and the age we were discouraged from banding. The craniofacial surgeon

at the time did agree to prscribe the helmet, the ortho also did not

recommend it mostly because of how mild he was but agreed to do it, she

said she would work with me. I mentioned always that what bothered me

was the big flat spot in the back. Looking at his head from the top was

kind of like looking at a triangle. Narrow forhead, parietals out and

pushed forward. The ortho always treated me with a jokingly

condescending kind of attitude and she has trouble explaining me what

she's doing or finding everytime we go there. Kind of like leave it to

me , let me do my job, I know what I'm doing.

Well It always seemed to me that the helmet touched where the flat spot

is and I've been asking about it every time. Once she said she can't

just leave a big space back there, that it has to be done in stages. Ok

I thought let's just let her do her job. But yesterday I told she

needed to explain to me more about this.

She told me a few things that are kind of troubling me:

1-from the very beginning, she said, the goal with him has been pretty

vague, she's not sure what we want to achieve??!!

2-There's nothing wrong with the big flat spot, that's what his head is

like, she said.

3-If my concern is the flat spot, she said, then we need to choose not

to work on the asymmetry anymore( which was never too bad, 5mm, and is

now 3mm)but on the flat spot. We can't address both

4-Still she can't shave too much on the back or, because his asymmetry

is so minimal, the helmet will start tilting forward.

So I'm troubled because:

ok the plagio was mild but it was there. I hate it when people dismiss

facts especially THE ORTHO.

I mentioned the flat spot from the beginning, now after 5 mos she says

it's a matter of choosing between asymm and that. I always thought that

the rounding on the back too is what would bring the asymm down not

only working on the forhead bossing a little on one side and the

parietals.

She did not take hand measurments yesterday, she thought maybe she was

going to fit him in for a scan(the last one was done on OCT 1)if we

want to be done at 6 mos. I said not today. I thought she might do it

in a hurry. She said it's ok we'll do a scan next time, Jan 6.So it's

going to be 5 wks without measurments. Is that ok? I don't know that I

want to trust her anymore. She repeated more than once he'll be fine,

no measurm needed.

Now Im not sure I'm doing good having him wear it longer than 6 mos

like I thought. Yesterday she said it's up to me. Should I have him

wear it past 24 mos? Can I make things worse since I'm not sure if we

are even on the same boat with the ortho as far as goals?

She said there's more life in the helmet for sure.

Sorry it's so long and probably confusing. I'm just still very saddened

about yesterday.

THANK YOU in advance

, Tampa, FL

, 23 mos, strband for 5 mos

[Guest guest]

Thank you Kathy. His Cst tharapists both think he looks better and I think so too but since the hand measurments have not been showing any difference I often think we are wrong and also I was hoping for more visible improvement by now on that flat spot. The fact that it's almost 6 months and the ortho not really being on board is quite discouraging. The boy doesn't have a problem wearing it so I was going to go longer. Like you said I'll wait for the scan and make sure I'll get copies for the level 5 which is actually the area concerning me most right now. I also will have to be more assertive and make her explain to me as much as I need to understand. When we saw her this week she did shave a little bit on the back after she told me I had to choose between asymm and that. So I told her to shave what she could. It's just so annoying to get those kind of comments so far into it. Also very confusing still. I understand that because of the asymm being so low she can't shave much at one time on the back but why was I never told that she decided not to focus on the back at all still bothers me. And why she says the flat spot doesn't play in the asymm problem? I guess she gave me more material for my next questions. How much longer do you think you'll be able to have wear his band? Kathy, thank you again. , Tampa, FL, 23 mos, starband for 5 mos

Plagiocephaly From: kathylorajensen@...Date: Thu, 17 Dec 2009 17:28:54 -0800Subject: Re: update 23 mos old starband

Hi ,I would be bothered too by a lot of this! Our ortho always answers our questions clearly. As the asymmetry improves on , the back also rounds out.I wouldn't worry about going 5 weeks without measurements at this age. We are going 6.5 weeks this time. The ortho said 6. I used to be scared this was too long, but when I go in too soon I am sometimes disappointed because the numbers actually get worse from measurement error. Just watch for deep red spots that don't go away.I might wait until your next scan to decide what to do. We ask for printouts of the contours at level 3 and level 5 and I study them carefully. So, far the helmet is helping very slowly with the back of 's head and not causing any harm that I can tell. Also, we study 's head to look for visual changes. So far the back is very slowly rounding out and the asymmetry between the left and right decreasing. Do you see any changes? You could try asking others too if they see any improvement. At this age it is very, very slow.The helmet hitting the ears, especially the right, bothers me also! 's right ear looks kind of curled around, but it was that way before the helmet. We are trying an ear splint on the right ear, but I'm not sure it helps. Our nanny suggested having sleep with a hat covering his ears once we take the helmet off. Let us know what happens.Kathy, mom to , 18.5 months, 6 months in Starband wrote: is now 23 mos old (20 adj), starband for 5 mos now. Yesterday we saw his ortho. She usually sees him every 3 wks. Yesterday it was 2 wks instead because I thought his helmet was maybe rubbing on his right ear and requested an appt for this week. She as usual laughed at my concerns.I'll remind everybody that 's plagio is mild and because of that and the age we were discouraged from banding. The craniofacial surgeon at the time did agree to prscribe the helmet, the ortho also did not recommend it mostly because of how mild he was but agreed to do it, she said she would work with me. I mentioned always that what bothered me was the big flat spot in the back. Looking at his head from the top was kind of like looking at a triangle. Narrow forhead, parietals out and pushed forward. The ortho always treated me with a jokingly condescending kind of attitude and she has trouble explaining me what she's doing or finding everytime we go there. Kind of like leave it to me , let me do my job, I know what I'm doing. Well It always seemed to me that the helmet touched where the flat spot is and I've been asking about it every time. Once she said she can't just leave a big space back there, that it has to be done in stages. Ok I thought let's just let her do her job. But yesterday I told she needed to explain to me more about this.She told me a few things that are kind of troubling me:1-from the very beginning, she said, the goal with him has been pretty vague, she's not sure what we want to achieve??!!2-There's nothing wrong with the big flat spot, that's what his head is like, she said. 3-If my concern is the flat spot, she said, then we need to choose not to work on the asymmetry anymore( which was never too bad, 5mm, and is now 3mm)but on the flat spot. We can't address both4-Still she can't shave too much on the back or, because his asymmetry is so minimal, the helmet will start tilting forward.So I'm troubled because: ok the plagio was mild but it was there. I hate it when people dismiss facts especially THE ORTHO.I mentioned the flat spot from the beginning, now after 5 mos she says it's a matter of choosing between asymm and that. I always thought that the rounding on the back too is what would bring the asymm down not only working on the forhead bossing a little on one side and the parietals.She did not take hand measurments yesterday, she thought maybe she was going to fit him in for a scan(the last one was done on OCT 1)if we want to be done at 6 mos. I said not today. I thought she might do it in a hurry. She said it's ok we'll do a scan next time, Jan 6.So it's going to be 5 wks without measurments. Is that ok? I don't know that I want to trust her anymore. She repeated more than once he'll be fine, no measurm needed. Now Im not sure I'm doing good having him wear it longer than 6 mos like I thought. Yesterday she said it's up to me. Should I have him wear it past 24 mos? Can I make things worse since I'm not sure if we are even on the same boat with the ortho as far as goals?She said there's more life in the helmet for sure. Sorry it's so long and probably confusing. I'm just still very saddened about yesterday. THANK YOU in advance, Tampa, FL, 23 mos, strband for 5 mos

[Guest guest]

Hi,

I would be discouraged with the ortho misunderstanding too. 

I understand about the measurements not matching what you see.  That

happens to us also and we use a scanner every six weeks.  Some scans

show improvement, but not all of them show a drop in asymmetry.  Then

it is really frustrating and I get depressed!  I think the improvement

is so slow that there is more measurement error between individual

scans than improvement.  I'm really scared what our next scan will

show!   's head still looks like it is improving.  We've visually

noticed no slow down in improvement since we started this process at

almost 12 months.  Visually, the improvement remains very slow and

steady.  So, there was nothing magical about 18 months or about 6

months in the helmet. 

That is good the therapists see improvement and it confirms what you

see.  Given our scans don't always pick up what we see, I'm not

surprised the hand measurements don't show improvement even if there

has been some.   Since our cases are mild, my theory is that even a

tiny bit of improvement in the measurements can visually be

significant.  That is why I think it is worth us continuing in the

helmet at this point.

I'm really hoping things work out so that we can continue with the

helmet for awhile.  We are at 6.5 months.  My husband told the ortho a

few months ago that we wanted to keep in the helmet as long as

possible, and he didn't object then.  Last scan neither my husband nor

the ortho brought up taking the helmet off.  Our next visit is Dec. 23

and my husband isn't going to say anything unless the ortho brings it

up.   If the ortho says something, my husband is going to tell him we

want to keep in the helmet.   We figure at the bare minimum, he

will adjust the helmet one last time and can still wear it for up

to 8 more weeks, which is the longest he said we can go between scans.

Best.

Kathy mom to , 18.5 months, 6.5 months is Starband

Lulei wrote:

 

Thank you Kathy.

His Cst tharapists both think he looks better and I think so too

but since the hand measurments have not been showing any difference I

often think we are wrong and also I was hoping for more visible

improvement by now on that flat spot. The fact that it's almost 6

months and the ortho not really being on board is quite discouraging.

The boy doesn't have a problem wearing it so I was going to go longer.

Like you said I'll wait for the scan and make sure I'll get copies for

the level 5 which is actually the area concerning me most right now. I

also will have to be more assertive and make her explain to me as much

as I need to understand.

 

 

 

When we saw her this week she did shave  a little bit on the back after

she told me I had to choose between asymm and that. So I told her to

shave what she could. It's just so annoying to get those kind of

comments so far into it. Also very confusing still. I understand that

because of the asymm being so low she can't shave much at one time on

the back but why was I never told that she decided not to focus on the

back at all still bothers me. And why she says the flat spot doesn't

play in the asymm problem? I guess she gave me more material for my

next questions.

 

 

How much longer do you think you'll be able to have wear his band?

 

Kathy, thank you again.

 

, Tampa, FL

, 23 mos, starband for 5 mos

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Plagiocephaly

From: kathylorajensengmail

Date: Thu, 17 Dec 2009 17:28:54 -0800

Subject: Re: update 23 mos old starband

 

Hi ,

I would be bothered too by a lot of this!  Our ortho always answers our

questions clearly.  As the asymmetry improves on , the back also

rounds out.

I wouldn't worry about going 5 weeks without measurements at this age. 

We are going 6.5 weeks this time.  The ortho said 6.  I used to be

scared this was too long, but when I go in too soon I am sometimes

disappointed because the numbers actually get worse from measurement

error.  Just watch for deep red spots that don't go away.

I might wait until your next scan to decide what to do.  We ask for

printouts of the contours at level 3 and level 5 and I study them

carefully.  So, far the helmet is helping very slowly with the back of

's head and not causing any harm that I can tell.  Also, we study

's head to look for visual changes.  So far the back is very slowly

rounding out and the asymmetry between the left and right decreasing. 

Do you see any changes?  You could try asking others too if they see

any improvement.  At this age it is very, very slow.

The helmet hitting the ears, especially the right, bothers me also!  

's right ear looks kind of curled around, but it was that way

before the helmet.  We are trying an ear splint on the right ear, but

I'm not sure it helps.  Our nanny suggested having sleep with a

hat covering his ears once we take the helmet off. 

Let us know what happens.

Kathy, mom to , 18.5 months, 6 months in Starband

wrote:

 

is now 23 mos old (20 adj), starband

for 5 mos now. Yesterday we saw his ortho. She usually sees him every 3

wks. Yesterday it was 2 wks instead because I thought his helmet was

maybe rubbing on his right ear and requested an appt for this week. She

as usual laughed at my concerns.

I'll remind everybody that 's plagio is mild and because of that

and the age we were discouraged from banding. The craniofacial surgeon

at the time did agree to prscribe the helmet, the ortho also did not

recommend it mostly because of how mild he was but agreed to do it, she

said she would work with me. I mentioned always that what bothered me

was the big flat spot in the back. Looking at his head from the top was

kind of like looking at a triangle. Narrow forhead, parietals out and

pushed forward. The ortho always treated me with a jokingly

condescending kind of attitude and she has trouble explaining me what

she's doing or finding everytime we go there. Kind of like leave it to

me , let me do my job, I know what I'm doing.

Well It always seemed to me that the helmet touched where the flat spot

is and I've been asking about it every time. Once she said she can't

just leave a big space back there, that it has to be done in stages. Ok

I thought let's just let her do her job. But yesterday I told she

needed to explain to me more about this.

She told me a few things that are kind of troubling me:

1-from the very beginning, she said, the goal with him has been pretty

vague, she's not sure what we want to achieve??!!

2-There's nothing wrong with the big flat spot, that's what his head is

like, she said.

3-If my concern is the flat spot, she said, then we need to choose not

to work on the asymmetry anymore( which was never too bad, 5mm, and is

now 3mm)but on the flat spot. We can't address both

4-Still she can't shave too much on the back or, because his asymmetry

is so minimal, the helmet will start tilting forward.

So I'm troubled because:

ok the plagio was mild but it was there. I hate it when people dismiss

facts especially THE ORTHO.

I mentioned the flat spot from the beginning, now after 5 mos she says

it's a matter of choosing between asymm and that. I always thought that

the rounding on the back too is what would bring the asymm down not

only working on the forhead bossing a little on one side and the

parietals.

She did not take hand measurments yesterday, she thought maybe she was

going to fit him in for a scan(the last one was done on OCT 1)if we

want to be done at 6 mos. I said not today. I thought she might do it

in a hurry. She said it's ok we'll do a scan next time, Jan 6.So it's

going to be 5 wks without measurments. Is that ok? I don't know that I

want to trust her anymore. She repeated more than once he'll be fine,

no measurm needed.

Now Im not sure I'm doing good having him wear it longer than 6 mos

like I thought. Yesterday she said it's up to me. Should I have him

wear it past 24 mos? Can I make things worse since I'm not sure if we

are even on the same boat with the ortho as far as goals?

She said there's more life in the helmet for sure.

Sorry it's so long and probably confusing. I'm just still very saddened

about yesterday.

THANK YOU in advance

, Tampa, FL

, 23 mos, strband for 5 mos