Re: update about almost 2 year old

[Guest guest]

Wow...another year?  My son is at 17 months, and I've just got the rx from the PHPfor the doc band.  I'm still on the fence whether or not to go through with it.  His PHP saidhe didn't think it was necessary, but that he'd give us the rx if we waned it. 

Just brought my son for a 2nd opinion from a Dr. that I really like but isn't in his practice anymore.  She was very understanding.  She said thatI'm not crazy for being concerned and that I should do it if it will put me at ease.  She also

said that if it was her child, she would not choose the doc band b/c it's fairly mild.  She has two young children.  I have to decide soon as my insurance only covers (partially) up to 18 months.I'm just worried that I'll fork over the dough and he'll totally hate it and never wear it, OR that I'll put him

through the whole thing and see zero change due to his age.On Mon, Dec 13, 2010 at 11:59 PM, Amy <amy.sanger.miller@...> wrote:

I am long overdue for updating any of you who are interested and

chiming in about banding an older baby.

My daughter, who is turning 2 a week from today, has been in her

STARband since 9/16 (when she was just a few days shy of 21 months).

We have been fortunate that she has tolerated the band very well at

night; however, as I have noticed others posting about, keeping it on

her head during the day has been a real challenge. She figured out

how to un-do the velcro pretty early on, and liked to do so " just

because she could. " Additionally, she likes to dress and un-dress

herself, which was very much complicated by the helmet, so she would

insist that it come off then just because of the activity that she

wanted to engage in (which we wanted to support as an important life

skill ;-)).

Therefore, she has also been wearing the helmet less than 23 hours

per day. However, at the first visit to the orthotist at CIRS in

Oakland, the orthotist was able to add an additional band of velcro,

that wrapped almost all the way around her head. This has entirely

prevented her from being able to take it off herself. In fact, it is

quite hard for us adults to get it off ;-). So . . . that is

something to know about and perhaps request. We continue to respond

to her requests/demands to take it off, so as not to make it a symbol

of a major power struggle. At this point, I feel like that is working

for us, even though she is probably only wearing it 15 - 20 hours per

day.

In terms of her improvement: The " numbers " aren't yet indicating the

change that is happening since her growth is so slow at this point.

However, my eyes, as well as the 3D image, are seeing it. Her head

shape, which we have been imaging for more than a year, essentially

hadn't changed in that time (other than overall size). However, in

just the two months from when she started wearing the band until the

last adjustment (11/24), her head shape changed noticeably (even my

husband, who has been very opposed/reluctant about treatment,

acknowledges the change, though he believes that it is perhaps " her

head shape shifting from baby to little girl " ): the bossing of the

forehead became less pronounced and it filled out a bit in the back

(she has very mild plagio and moderate brachy). So . . . I am finding

fewer angles form which the shape of her head bothers/concerns me,

and overall I am very pleased with how things are going.

However, I imagine she will be wearing the helmet, at least to sleep

in, for quite awhile (until she outgrows it, which might be another

year?). Since we live ~3 hours drive away from CIRS, it is turning

out to be a good thing, as we only need to go for adjustments every 6

weeks or so, though will obviously need to do so for longer.

If I ever get around to scanning in the 3D images, I will post them

on group. I'll let you know if/when I do.

If anyone has any questions, I'll do my best to answer. Best of luck

to everyone!

Amy

Zia, almost 2, STARband since 9/16

Chico, CA

On Dec 13, 2010, at 7:29 PM, christineashok wrote:

> I've heard if you put a barrette on the velcro they won't be able

> to open it (unless they can pull it off with the velcro closed).

> Are you seeing any improvement in their heads?

> -christine

> sydney, almost 5 yrs, starband grad

>

>

>>

>>

>> My boys have been wearing the helmets for 2 months now. They love

>> taking off the helmets on their own and chewing the gap stoppers.

>> I'm still not sure about how long the grandparents have the

>> helmets taken off during the day while they watch the children.

>> Also when I put them to sleep at night, I have to take the helmets

>> off otherwise they refuse to sleep. When they fall into sound

>> sleep, I'll put them back on. On some bad days when my husband

>> watches them, he takes off the helmets for many many hours... I

>> just don't have control of how my other families do it.

>>

>> So my boys only wear the helmets max 20 hours a day. I kind of

>> start to realize that it's not doing what it's supposed to do with

>> not wearing full time, but it could be just my boys old ages. They

>> are over 16 months now.

>>

>>

>>

>>

>>

>> Plagiocephaly

>> From: annekbui@...

>> Date: Thu, 9 Dec 2010 19:31:42 +0000

>> Subject: Less Than 23 hrs/Day?

>>

>>

>>

>>

>>

>>

>> Hi,

>>

>> Anyone keep the band (Star band on our case) on their kids for

>> less than 23hrs/day and still have a successful outcome? I'm not

>> talking about an extreme deviation, but keeping it on for

>> something like maybe 20 hrs/day? I realize that this may prolong

>> the treatment, but can it potentially derail it?

>>

>> Our caregiver reports that our son gets extremely fussy in the

>> early afternoon, and I wonder if it would be OK for him to get an

>> extended break (4 hrs) on a daily basis. Less fussiness would

>> enable our caregiver to devote more time to our older child, whom

>> she also takes care of. I realize that she could take off his

>> helmet, wipe his head and allow him to have a good scratch, and

>> then put the helmet back on, but our son hates having his helmet

>> put back on multiple times. He gets his bath, and the helmet is

>> cleaned when my husband and I get home from work (7pm-ish).

>>

>> Thanks,

>> Anne

>> (7-month old son wearing Starband for almost 4 weeks now)

>>

>

>

>

>

> ------------------------------------

>

> For more plagio info

[Guest guest]

My advice (take it or leave it), as someone who vacillated for more than a year and then finally went ahead and got the band, is to do it. If you have concerns/doubts/guilt now, there is a good chance that you may continue to have them in the future (at least that was true in my case). None of the docs or orthotists that we saw felt that a band was necessary (even though her CI has been as high as 92, which some consider to be severe), but they didn't see my daughter's head shape before it got deformed; my mind's eye always superimposes what IS with what I believe SHOULD STILL BE, and that difference is enough for me to feel that banding is a good idea even if others don't see it. You sound like you are in a similar boat, in that your son's case is mild enough that others don't see it or don't think it is severe enough to worry about; in some ways that just makes the decision more difficult (since it is actually a decision rather than an obvious necessity). I was incredibly concerned about my daughter not accepting the helmet, and that has been much less of a problem than I expected (and seems less than many others on this list with younger babies). In her case, the issue has been much more about the helmet interfering with her activities (dressing herself, wearing hats and sunglasses - all of which she started doing at a relatively young age), rather than it being uncomfortable. That being said, I went into this whole thing knowing that it might be money down the drain, but felt that the risk was worth it since it would give me peace of mind knowing that I had tried everything, even if belatedly.Starting at 21 months, we saw noticeable (significant?) change in just over two month of less-than-full-time wearing, so I think that you would very likely see some improvement starting at an even younger age. Lastly, when I mention her wearing it another year: With her head growing as slowly at this point as it is, I (and the orthotist) don't expect her to actually outgrow the helmet for awhile. And since she doesn't mind wearing it (unless it interferes with her activities ;-)), and because we paid (out of pocket) a lot of money for it, I don't know why we wouldn't continue having her wear it and getting the most benefit/improvement possible, at the very least while she is sleeping. Perhaps there may come a time when I don't see ANY need for her continuing to wear it, at which point we could call it done (even if she hasn't actually outgrown the helmet).Best of luck,AmyZia, almost 2, STARband since 9/16Chico, CAOn Dec 14, 2010, at 7:42 AM, Kapell wrote:Wow...another year? My son is at 17 months, and I've just got the rx from the PHPfor the doc band. I'm still on the fence whether or not to go through with it. His PHP saidhe didn't think it was necessary, but that he'd give us the rx if we waned it. Just brought my son for a 2nd opinion from a Dr. that I really like but isn't in his practice anymore. She was very understanding. She said thatI'm not crazy for being concerned and that I should do it if it will put me at ease. She also said that if it was her child, she would not choose the doc band b/c it's fairly mild. She has two young children. I have to decide soon as my insurance only covers (partially) up to 18 months.I'm just worried that I'll fork over the dough and he'll totally hate it and never wear it, OR that I'll put him through the whole thing and see zero change due to his age.On Mon, Dec 13, 2010 at 11:59 PM, Amy <amy.sanger.miller@...> wrote:I am long overdue for updating any of you who are interested andchiming in about banding an older baby.My daughter, who is turning 2 a week from today, has been in herSTARband since 9/16 (when she was just a few days shy of 21 months).We have been fortunate that she has tolerated the band very well atnight; however, as I have noticed others posting about, keeping it onher head during the day has been a real challenge. She figured outhow to un-do the velcro pretty early on, and liked to do so "justbecause she could." Additionally, she likes to dress and un-dressherself, which was very much complicated by the helmet, so she wouldinsist that it come off then just because of the activity that shewanted to engage in (which we wanted to support as an important lifeskill ;-)).Therefore, she has also been wearing the helmet less than 23 hoursper day. However, at the first visit to the orthotist at CIRS inOakland, the orthotist was able to add an additional band of velcro,that wrapped almost all the way around her head. This has entirelyprevented her from being able to take it off herself. In fact, it isquite hard for us adults to get it off ;-). So . . . that issomething to know about and perhaps request. We continue to respondto her requests/demands to take it off, so as not to make it a symbolof a major power struggle. At this point, I feel like that is workingfor us, even though she is probably only wearing it 15 - 20 hours perday.In terms of her improvement: The "numbers" aren't yet indicating thechange that is happening since her growth is so slow at this point.However, my eyes, as well as the 3D image, are seeing it. Her headshape, which we have been imaging for more than a year, essentiallyhadn't changed in that time (other than overall size). However, injust the two months from when she started wearing the band until thelast adjustment (11/24), her head shape changed noticeably (even myhusband, who has been very opposed/reluctant about treatment,acknowledges the change, though he believes that it is perhaps "herhead shape shifting from baby to little girl"): the bossing of theforehead became less pronounced and it filled out a bit in the back(she has very mild plagio and moderate brachy). So . . . I am findingfewer angles form which the shape of her head bothers/concerns me,and overall I am very pleased with how things are going.However, I imagine she will be wearing the helmet, at least to sleepin, for quite awhile (until she outgrows it, which might be anotheryear?). Since we live ~3 hours drive away from CIRS, it is turningout to be a good thing, as we only need to go for adjustments every 6weeks or so, though will obviously need to do so for longer.If I ever get around to scanning in the 3D images, I will post themon group. I'll let you know if/when I do.If anyone has any questions, I'll do my best to answer. Best of luckto everyone!AmyZia, almost 2, STARband since 9/16Chico, CAOn Dec 13, 2010, at 7:29 PM, christineashok wrote:> I've heard if you put a barrette on the velcro they won't be able> to open it (unless they can pull it off with the velcro closed).> Are you seeing any improvement in their heads?> -christine> sydney, almost 5 yrs, starband grad>> >>>>>> My boys have been wearing the helmets for 2 months now. They love>> taking off the helmets on their own and chewing the gap stoppers.>> I'm still not sure about how long the grandparents have the>> helmets taken off during the day while they watch the children.>> Also when I put them to sleep at night, I have to take the helmets>> off otherwise they refuse to sleep. When they fall into sound>> sleep, I'll put them back on. On some bad days when my husband>> watches them, he takes off the helmets for many many hours... I>> just don't have control of how my other families do it.>>>> So my boys only wear the helmets max 20 hours a day. I kind of>> start to realize that it's not doing what it's supposed to do with>> not wearing full time, but it could be just my boys old ages. They>> are over 16 months now.>>>>>>>>>>>> Plagiocephaly >> From: annekbui@...>> Date: Thu, 9 Dec 2010 19:31:42 +0000>> Subject: Less Than 23 hrs/Day?>>>>>>>>>>>>>> Hi,>>>> Anyone keep the band (Star band on our case) on their kids for>> less than 23hrs/day and still have a successful outcome? I'm not>> talking about an extreme deviation, but keeping it on for>> something like maybe 20 hrs/day? I realize that this may prolong>> the treatment, but can it potentially derail it?>>>> Our caregiver reports that our son gets extremely fussy in the>> early afternoon, and I wonder if it would be OK for him to get an>> extended break (4 hrs) on a daily basis. Less fussiness would>> enable our caregiver to devote more time to our older child, whom>> she also takes care of. I realize that she could take off his>> helmet, wipe his head and allow him to have a good scratch, and>> then put the helmet back on, but our son hates having his helmet>> put back on multiple times. He gets his bath, and the helmet is>> cleaned when my husband and I get home from work (7pm-ish).>>>> Thanks,>> Anne>> (7-month old son wearing Starband for almost 4 weeks now)>>>>>>> ------------------------------------>> For more plagio info, go to www.plagiocephaly.org/support>

[Guest guest]

It does make the decisions difficult when there is no " official " recommendation.  What makes my decision nearly impossible is that my wife is totally opposed.  She say's to just " do what you think is right " , but this is after over a year of some pretty heated arguments.  She's just tired of me bringing it up all the time.  It has caused some friction in our relationship, and I feel terrible about it.  It will be me who will field the questions and defend the therapy to her family, whom we see often.  I feel it will be very difficult to do this on my own.  And when he can't get to sleep that first night, or has red marks, or looks at her and says, " off?, off?, off? " I feel that will be the end of the helmet.  She knows that his head is a little flat, but it doesn't bother her in the least.

On Wed, Dec 15, 2010 at 12:50 AM, Amy <amy.sanger.miller@...> wrote:

My advice (take it or leave it), as someone who vacillated for more than a year and then finally went ahead and got the band, is to do it. If you have concerns/doubts/guilt now, there is a good chance that you may continue to have them in the future (at least that was true in my case).  

None of the docs or orthotists that we saw felt that a band was necessary (even though her CI has been as high as 92, which some consider to be severe), but they didn't see my daughter's head shape before it got deformed; my mind's eye always superimposes what IS with what I believe SHOULD STILL BE, and that difference is enough for me to feel that banding is a good idea even if others don't see it. You sound like you are in a similar boat, in that your son's case is mild enough that others don't see it or don't think it is severe enough to worry about; in some ways that just makes the decision more difficult (since it is actually a decision rather than an obvious necessity). 

I was incredibly concerned about my daughter not accepting the helmet, and that has been much less of a problem than I expected (and seems less than many others on this list with younger babies). In her case, the issue has been much more about the helmet interfering with her activities (dressing herself, wearing hats and sunglasses - all of which she started doing at a relatively young age), rather than it being uncomfortable. That being said, I went into this whole thing knowing that it might be money down the drain, but felt that the risk was worth it since it would give me peace of mind knowing that I had tried everything, even if belatedly.

Starting at 21 months, we saw noticeable (significant?) change in just over two month of less-than-full-time wearing, so I think that you would very likely see some improvement starting at an even younger age. 

Lastly, when I mention her wearing it another year: With her head growing as slowly at this point as it is, I (and the orthotist) don't expect her to actually outgrow the helmet for awhile. And since she doesn't mind wearing it (unless it interferes with her activities ;-)), and because we paid (out of pocket) a lot of money for it, I don't know why we wouldn't continue having her wear it and getting the most benefit/improvement possible, at the very least while she is sleeping. Perhaps there may come a time when I don't see ANY need for her continuing to wear it, at which point we could call it done (even if she hasn't actually outgrown the helmet).

Best of luck,AmyZia, almost 2, STARband since 9/16Chico, CAOn Dec 14, 2010, at 7:42 AM, Kapell wrote:

Wow...another year?  My son is at 17 months, and I've just got the rx from the PHPfor the doc band.  I'm still on the fence whether or not to go through with it.  His PHP saidhe didn't think it was necessary, but that he'd give us the rx if we waned it.  

Just brought my son for a 2nd opinion from a Dr. that I really like but isn't in his practice anymore.  She was very understanding.  She said thatI'm not crazy for being concerned and that I should do it if it will put me at ease.  She also 

said that if it was her child, she would not choose the doc band b/c it's fairly mild.  She has two young children.  I have to decide soon as my insurance only covers (partially) up to 18 months.I'm just worried that I'll fork over the dough and he'll totally hate it and never wear it, OR that I'll put him 

through the whole thing and see zero change due to his age.On Mon, Dec 13, 2010 at 11:59 PM, Amy  <amy.sanger.miller@...> wrote:

I am long overdue for updating any of you who are interested andchiming in about banding an older baby.

My daughter, who is turning 2 a week from today, has been in herSTARband since 9/16 (when she was just a few days shy of 21 months).We have been fortunate that she has tolerated the band very well atnight; however, as I have noticed others posting about, keeping it on

her head during the day has been a real challenge. She figured outhow to un-do the velcro pretty early on, and liked to do so " justbecause she could. " Additionally, she likes to dress and un-dressherself, which was very much complicated by the helmet, so she would

insist that it come off then just because of the activity that shewanted to engage in (which we wanted to support as an important lifeskill ;-)).Therefore, she has also been wearing the helmet less than 23 hours

per day. However, at the first visit to the orthotist at CIRS inOakland, the orthotist was able to add an additional band of velcro,that wrapped almost all the way around her head. This has entirelyprevented her from being able to take it off herself. In fact, it is

quite hard for us adults to get it off ;-). So . . . that issomething to know about and perhaps request. We continue to respondto her requests/demands to take it off, so as not to make it a symbolof a major power struggle. At this point, I feel like that is working

for us, even though she is probably only wearing it 15 - 20 hours perday.In terms of her improvement: The " numbers " aren't yet indicating thechange that is happening since her growth is so slow at this point.

However, my eyes, as well as the 3D image, are seeing it. Her headshape, which we have been imaging for more than a year, essentiallyhadn't changed in that time (other than overall size). However, injust the two months from when she started wearing the band until the

last adjustment (11/24), her head shape changed noticeably (even myhusband, who has been very opposed/reluctant about treatment,acknowledges the change, though he believes that it is perhaps " herhead shape shifting from baby to little girl " ): the bossing of the

forehead became less pronounced and it filled out a bit in the back(she has very mild plagio and moderate brachy). So . . . I am findingfewer angles form which the shape of her head bothers/concerns me,and overall I am very pleased with how things are going.

However, I imagine she will be wearing the helmet, at least to sleepin, for quite awhile (until she outgrows it, which might be anotheryear?). Since we live ~3 hours drive away from CIRS, it is turningout to be a good thing, as we only need to go for adjustments every 6

weeks or so, though will obviously need to do so for longer.If I ever get around to scanning in the 3D images, I will post themon group. I'll let you know if/when I do.If anyone has any questions, I'll do my best to answer. Best of luck

to everyone!AmyZia, almost 2, STARband since 9/16Chico, CAOn Dec 13, 2010, at 7:29 PM, christineashok wrote:> I've heard if you put a barrette on the velcro they won't be able

> to open it (unless they can pull it off with the velcro closed).> Are you seeing any improvement in their heads?> -christine> sydney, almost 5 yrs, starband grad>> >>>>>> My boys have been wearing the helmets for 2 months now. They love>> taking off the helmets on their own and chewing the gap stoppers.>> I'm still not sure about how long the grandparents have the

>> helmets taken off during the day while they watch the children.>> Also when I put them to sleep at night, I have to take the helmets>> off otherwise they refuse to sleep. When they fall into sound

>> sleep, I'll put them back on. On some bad days when my husband>> watches them, he takes off the helmets for many many hours... I>> just don't have control of how my other families do it.

>>>> So my boys only wear the helmets max 20 hours a day. I kind of>> start to realize that it's not doing what it's supposed to do with>> not wearing full time, but it could be just my boys old ages. They

>> are over 16 months now.>>>>>>>>>>>> To: Plagiocephaly

>> From: annekbui@...>> Date: Thu, 9 Dec 2010 19:31:42 +0000>> Subject: Less Than 23 hrs/Day?>>>>>>>>>>>>>> Hi,>>

>> Anyone keep the band (Star band on our case) on their kids for>> less than 23hrs/day and still have a successful outcome? I'm not>> talking about an extreme deviation, but keeping it on for

>> something like maybe 20 hrs/day? I realize that this may prolong>> the treatment, but can it potentially derail it?>>>> Our caregiver reports that our son gets extremely fussy in the

>> early afternoon, and I wonder if it would be OK for him to get an>> extended break (4 hrs) on a daily basis. Less fussiness would>> enable our caregiver to devote more time to our older child, whom

>> she also takes care of. I realize that she could take off his>> helmet, wipe his head and allow him to have a good scratch, and>> then put the helmet back on, but our son hates having his helmet

>> put back on multiple times. He gets his bath, and the helmet is>> cleaned when my husband and I get home from work (7pm-ish).>>>> Thanks,>> Anne>> (7-month old son wearing Starband for almost 4 weeks now)

>>>>>>> ------------------------------------>> For more plagio info, go to www.plagiocephaly.org/support

>