Re: Malcolm got his helmet

March 31, 2006

>

> I'm happy to report that my son Malcolm got his DOC band Monday

afternoon.

> Fortunately, Oxford is paying for it.

>

> So far, we haven't had too many hiccups. He protested initially

when he

> came home with the helmet (i.e. cried for an hour and a half) and

on and off

> since then. He sleeps through the night, but his naps have been

hit or

> miss. He's had some pink spots, which have faded within an hour.

However,

> today he woke up with some redness by the right side of his ear

and right

> side of the forehead (affected side). Otherwise he seems to

tolerate the

> band.

>

> Reactions to Malcolm's helmet have been mixed. The first person

who saw his

> band told me that his son wore one five years ago. Two older

mothers

> compared it to club feet, which I thought was another good way to

compare

> it. Other people have stared, glared or made odd comments. I'm

trying to

> take the reactions in my stride and to conserve my energy for my

son's CT

> weekly adjustments, pt, and other medical appts.

>

> FYI, a week before Malcolm got his band, I saw Dr. Goodrich

> (www.jamestgoodrich.net <http://www.jamestgoodrich.net/> ) at

Montefiore

> Children's Hospital in the Bronx. Dr. Goodrich is a top pediatric

> neurosurgeon and cranial specialist who specially specializes in

skull

> deformities, including plagiocephaly. He told me that no amount

of pt would

> correct my son's plagio (remember, I was the one with the crazy pt

who said

> to apply pressure with my fingertips to the base of my son's

skull). He

> said that my son would make a good candidate for the helmet and

would not

> get correction without medical intervention. He advises parents

to try

> repositioning for 2-3 months. If they haven't seen any or little

> improvement after trying repo, then it's time for parents to

consider

> medical intervention. In in-utero cases like Malcolm's (he was

born with

> plagio and tort as his head was wedged against my right rib cage

since week

> 25 or so), plagio is more intractable and requires medical

intervention.

>

> So, here I am with a top pediatric neurosurgeon and cranial facial

> specialist who basically confirms what I already knew, supports my

decision

> and contradicts what other pediatricians and pts were telling me.

Here I

> can say that I'm not nuts. It's not me; it's them!!! And I have

the good

> doctor to back me up.

>

> Carolyn in NYC

>

> Mum to Malcolm - 4 mos - born with plagio and tort - Doc band 3/27

how soon after birth was he diganosed? My son was born 3 weeks early

because he was tied up in the imbilical cord so he had limited

movement inutero.. yet when he was born he had a flat head and the

dr or pediatrican never said a thing till he was 2 months then form

2 -6 month she just said to reposition and at 6 months he was

diganosed with plagio and tort.. i think an earlier diagnoses would

have been nice so how long untill your son was?

>

March 31, 2006

>

> I'm happy to report that my son Malcolm got his DOC band Monday

afternoon.

> Fortunately, Oxford is paying for it.

>

> So far, we haven't had too many hiccups. He protested initially

when he

> came home with the helmet (i.e. cried for an hour and a half) and

on and off

> since then. He sleeps through the night, but his naps have been

hit or

> miss. He's had some pink spots, which have faded within an hour.

However,

> today he woke up with some redness by the right side of his ear

and right

> side of the forehead (affected side). Otherwise he seems to

tolerate the

> band.

>

> Reactions to Malcolm's helmet have been mixed. The first person

who saw his

> band told me that his son wore one five years ago. Two older

mothers

> compared it to club feet, which I thought was another good way to

compare

> it. Other people have stared, glared or made odd comments. I'm

trying to

> take the reactions in my stride and to conserve my energy for my

son's CT

> weekly adjustments, pt, and other medical appts.

>

> FYI, a week before Malcolm got his band, I saw Dr. Goodrich

> (www.jamestgoodrich.net <http://www.jamestgoodrich.net/> ) at

Montefiore

> Children's Hospital in the Bronx. Dr. Goodrich is a top pediatric

> neurosurgeon and cranial specialist who specially specializes in

skull

> deformities, including plagiocephaly. He told me that no amount

of pt would

> correct my son's plagio (remember, I was the one with the crazy pt

who said

> to apply pressure with my fingertips to the base of my son's

skull). He

> said that my son would make a good candidate for the helmet and

would not

> get correction without medical intervention. He advises parents

to try

> repositioning for 2-3 months. If they haven't seen any or little

> improvement after trying repo, then it's time for parents to

consider

> medical intervention. In in-utero cases like Malcolm's (he was

born with

> plagio and tort as his head was wedged against my right rib cage

since week

> 25 or so), plagio is more intractable and requires medical

intervention.

>

> So, here I am with a top pediatric neurosurgeon and cranial facial

> specialist who basically confirms what I already knew, supports my

decision

> and contradicts what other pediatricians and pts were telling me.

Here I

> can say that I'm not nuts. It's not me; it's them!!! And I have

the good

> doctor to back me up.

>

> Carolyn in NYC

>

> Mum to Malcolm - 4 mos - born with plagio and tort - Doc band 3/27

how soon after birth was he diganosed? My son was born 3 weeks early

because he was tied up in the imbilical cord so he had limited

movement inutero.. yet when he was born he had a flat head and the

dr or pediatrican never said a thing till he was 2 months then form

2 -6 month she just said to reposition and at 6 months he was

diganosed with plagio and tort.. i think an earlier diagnoses would

have been nice so how long untill your son was?

>

March 31, 2006

Carolyn,

Glad to hear that things are going well. It is nice to have a doctor

back up what your mommy instincts were already telling you. I wish

you continued sucess with the band, keep us posted.

CAROLG

>

> I'm happy to report that my son Malcolm got his DOC band Monday

afternoon.

> Fortunately, Oxford is paying for it.

>

> So far, we haven't had too many hiccups. He protested initially

when he

> came home with the helmet (i.e. cried for an hour and a half) and

on and off

> since then. He sleeps through the night, but his naps have been

hit or

> miss. He's had some pink spots, which have faded within an hour.

However,

> today he woke up with some redness by the right side of his ear and

right

> side of the forehead (affected side). Otherwise he seems to

tolerate the

> band.

>

> Reactions to Malcolm's helmet have been mixed. The first person

who saw his

> band told me that his son wore one five years ago. Two older

mothers

> compared it to club feet, which I thought was another good way to

compare

> it. Other people have stared, glared or made odd comments. I'm

trying to

> take the reactions in my stride and to conserve my energy for my

son's CT

> weekly adjustments, pt, and other medical appts.

>

> FYI, a week before Malcolm got his band, I saw Dr. Goodrich

> (www.jamestgoodrich.net <http://www.jamestgoodrich.net/> ) at

Montefiore

> Children's Hospital in the Bronx. Dr. Goodrich is a top pediatric

> neurosurgeon and cranial specialist who specially specializes in

skull

> deformities, including plagiocephaly. He told me that no amount of

pt would

> correct my son's plagio (remember, I was the one with the crazy pt

who said

> to apply pressure with my fingertips to the base of my son's

skull). He

> said that my son would make a good candidate for the helmet and

would not

> get correction without medical intervention. He advises parents to

try

> repositioning for 2-3 months. If they haven't seen any or little

> improvement after trying repo, then it's time for parents to

consider

> medical intervention. In in-utero cases like Malcolm's (he was

born with

> plagio and tort as his head was wedged against my right rib cage

since week

> 25 or so), plagio is more intractable and requires medical

intervention.

>

> So, here I am with a top pediatric neurosurgeon and cranial facial

> specialist who basically confirms what I already knew, supports my

decision

> and contradicts what other pediatricians and pts were telling me.

Here I

> can say that I'm not nuts. It's not me; it's them!!! And I have

the good

> doctor to back me up.

>

> Carolyn in NYC

>

> Mum to Malcolm - 4 mos - born with plagio and tort - Doc band 3/27

>

March 31, 2006

Carolyn,

Glad to hear that things are going well. It is nice to have a doctor

back up what your mommy instincts were already telling you. I wish

you continued sucess with the band, keep us posted.

CAROLG

>

> I'm happy to report that my son Malcolm got his DOC band Monday

afternoon.

> Fortunately, Oxford is paying for it.

>

> So far, we haven't had too many hiccups. He protested initially

when he

> came home with the helmet (i.e. cried for an hour and a half) and

on and off

> since then. He sleeps through the night, but his naps have been

hit or

> miss. He's had some pink spots, which have faded within an hour.

However,

> today he woke up with some redness by the right side of his ear and

right

> side of the forehead (affected side). Otherwise he seems to

tolerate the

> band.

>

> Reactions to Malcolm's helmet have been mixed. The first person

who saw his

> band told me that his son wore one five years ago. Two older

mothers

> compared it to club feet, which I thought was another good way to

compare

> it. Other people have stared, glared or made odd comments. I'm

trying to

> take the reactions in my stride and to conserve my energy for my

son's CT

> weekly adjustments, pt, and other medical appts.

>

> FYI, a week before Malcolm got his band, I saw Dr. Goodrich

> (www.jamestgoodrich.net <http://www.jamestgoodrich.net/> ) at

Montefiore

> Children's Hospital in the Bronx. Dr. Goodrich is a top pediatric

> neurosurgeon and cranial specialist who specially specializes in

skull

> deformities, including plagiocephaly. He told me that no amount of

pt would

> correct my son's plagio (remember, I was the one with the crazy pt

who said

> to apply pressure with my fingertips to the base of my son's

skull). He

> said that my son would make a good candidate for the helmet and

would not

> get correction without medical intervention. He advises parents to

try

> repositioning for 2-3 months. If they haven't seen any or little

> improvement after trying repo, then it's time for parents to

consider

> medical intervention. In in-utero cases like Malcolm's (he was

born with

> plagio and tort as his head was wedged against my right rib cage

since week

> 25 or so), plagio is more intractable and requires medical

intervention.

>

> So, here I am with a top pediatric neurosurgeon and cranial facial

> specialist who basically confirms what I already knew, supports my

decision

> and contradicts what other pediatricians and pts were telling me.

Here I

> can say that I'm not nuts. It's not me; it's them!!! And I have

the good

> doctor to back me up.

>

> Carolyn in NYC

>

> Mum to Malcolm - 4 mos - born with plagio and tort - Doc band 3/27

>

March 31, 2006

I hope your son adjusts well over the next few days. You are very

lucky to have a specialist with such credentials. Yay your not

nuts! But we already knew that. Keep us posted.

Haylee

mom to andre doc band grad

>

> I'm happy to report that my son Malcolm got his DOC band Monday

afternoon.

> Fortunately, Oxford is paying for it.

>

> So far, we haven't had too many hiccups. He protested initially

when he

> came home with the helmet (i.e. cried for an hour and a half) and

on and off

> since then. He sleeps through the night, but his naps have been

hit or

> miss. He's had some pink spots, which have faded within an hour.

However,

> today he woke up with some redness by the right side of his ear

and right

> side of the forehead (affected side). Otherwise he seems to

tolerate the

> band.

>

> Reactions to Malcolm's helmet have been mixed. The first person

who saw his

> band told me that his son wore one five years ago. Two older

mothers

> compared it to club feet, which I thought was another good way to

compare

> it. Other people have stared, glared or made odd comments. I'm

trying to

> take the reactions in my stride and to conserve my energy for my

son's CT

> weekly adjustments, pt, and other medical appts.

>

> FYI, a week before Malcolm got his band, I saw Dr. Goodrich

> (www.jamestgoodrich.net <http://www.jamestgoodrich.net/> ) at

Montefiore

> Children's Hospital in the Bronx. Dr. Goodrich is a top pediatric

> neurosurgeon and cranial specialist who specially specializes in

skull

> deformities, including plagiocephaly. He told me that no amount

of pt would

> correct my son's plagio (remember, I was the one with the crazy pt

who said

> to apply pressure with my fingertips to the base of my son's

skull). He

> said that my son would make a good candidate for the helmet and

would not

> get correction without medical intervention. He advises parents

to try

> repositioning for 2-3 months. If they haven't seen any or little

> improvement after trying repo, then it's time for parents to

consider

> medical intervention. In in-utero cases like Malcolm's (he was

born with

> plagio and tort as his head was wedged against my right rib cage

since week

> 25 or so), plagio is more intractable and requires medical

intervention.

>

> So, here I am with a top pediatric neurosurgeon and cranial facial

> specialist who basically confirms what I already knew, supports my

decision

> and contradicts what other pediatricians and pts were telling me.

Here I

> can say that I'm not nuts. It's not me; it's them!!! And I have

the good

> doctor to back me up.

>

> Carolyn in NYC

>

> Mum to Malcolm - 4 mos - born with plagio and tort - Doc band 3/27

>

March 31, 2006

I hope your son adjusts well over the next few days. You are very

lucky to have a specialist with such credentials. Yay your not

nuts! But we already knew that. Keep us posted.

Haylee

mom to andre doc band grad

>

> I'm happy to report that my son Malcolm got his DOC band Monday

afternoon.

> Fortunately, Oxford is paying for it.

>

> So far, we haven't had too many hiccups. He protested initially

when he

> came home with the helmet (i.e. cried for an hour and a half) and

on and off

> since then. He sleeps through the night, but his naps have been

hit or

> miss. He's had some pink spots, which have faded within an hour.

However,

> today he woke up with some redness by the right side of his ear

and right

> side of the forehead (affected side). Otherwise he seems to

tolerate the

> band.

>

> Reactions to Malcolm's helmet have been mixed. The first person

who saw his

> band told me that his son wore one five years ago. Two older

mothers

> compared it to club feet, which I thought was another good way to

compare

> it. Other people have stared, glared or made odd comments. I'm

trying to

> take the reactions in my stride and to conserve my energy for my

son's CT

> weekly adjustments, pt, and other medical appts.

>

> FYI, a week before Malcolm got his band, I saw Dr. Goodrich

> (www.jamestgoodrich.net <http://www.jamestgoodrich.net/> ) at

Montefiore

> Children's Hospital in the Bronx. Dr. Goodrich is a top pediatric

> neurosurgeon and cranial specialist who specially specializes in

skull

> deformities, including plagiocephaly. He told me that no amount

of pt would

> correct my son's plagio (remember, I was the one with the crazy pt

who said

> to apply pressure with my fingertips to the base of my son's

skull). He

> said that my son would make a good candidate for the helmet and

would not

> get correction without medical intervention. He advises parents

to try

> repositioning for 2-3 months. If they haven't seen any or little

> improvement after trying repo, then it's time for parents to

consider

> medical intervention. In in-utero cases like Malcolm's (he was

born with

> plagio and tort as his head was wedged against my right rib cage

since week

> 25 or so), plagio is more intractable and requires medical

intervention.

>

> So, here I am with a top pediatric neurosurgeon and cranial facial

> specialist who basically confirms what I already knew, supports my

decision

> and contradicts what other pediatricians and pts were telling me.

Here I

> can say that I'm not nuts. It's not me; it's them!!! And I have

the good

> doctor to back me up.

>

> Carolyn in NYC

>

> Mum to Malcolm - 4 mos - born with plagio and tort - Doc band 3/27

>

March 31, 2006

The pediatrician diagnosed Malcolm five days after he was born. I said

Malcolm was a breech baby and born via c-section. He then took one look at

Malcolm's head and neck and said that he had plagio and tort. He showed us

Malcolm's facial asymmetry (ears, eyes, cheeks, forehead bossing) and

flattening on the right side. Remember, I live in NYC and this pediatrician

had another patient with plagio two years before my son was born.

Since Malcolm was our first child, my husband and I were overwhelmed with

the birth of our son and the diagnosis. Over the course of the first month,

the pediatrician advised to us about repo and neck tilts. He said the

plagio wouldn't eventually get corrected no matter what happened so my

husband and I weren't overly concerned. Bear in mind, too, how sleep

deprived we both were and stressed out with a newborn.

At two months, we were referred to a pt and started pt as well as continuing

repo. And a month later, I asked about when we should consider a timeline

for the plagio and medical intervention. I called CT and got a free

assessment for Malcolm around the fourth month.

The pediatric neurosurgeon/cranial facial specialist told me that they

advise parents to repo for 2-3 months and then if that yields little to no

results to consider medical intervention.

The problem I have is that they know there are plagio cases caused in-utero

and that in-utero cases are more intractable and almost always need medical

intervention yet they advise parents to repo and wait months for a helmet.

Not surprisingly, this leaves parents with the impression that they have the

ability to correct plagio when they do not. No amount of pt will correct

plagio, though pediatricians and physical therapists may advise you

otherwise.

It's mind-boggling, and actually frightening, how much misinformation there

is on plague and tort.

Logic tells me that if a baby's head is wedged against a right rib cage for

four months or me that it's going to take medical intervention to get

medical intervention to correct the head. I'm no doctor but please this

isn't rocket science. Yet I can't tell you the amount of misinformation and

bad advice doctors, pts, and others have told me. It's incredible.

So, yes, in a way it was nice to have the diagnosis immediately. However,

there's only so much parents can do. You can only do your best with repo

and then after 2-3 months it's time to call it quits and consider medical

intervention.

Look Malcolm was diagnosed with plagio five days after birth and he only

just got his helmet at 4 1/2 mos. Please don't beat yourself up over this.

You're not infallible or superhuman.

Carolyn in NYC

Mum to Malcolm - 4 mos - born with plagio and tort - doc band 3/27

Re: Malcolm got his helmet

>

> I'm happy to report that my son Malcolm got his DOC band Monday

afternoon.

> Fortunately, Oxford is paying for it.

>

> So far, we haven't had too many hiccups. He protested initially

when he

> came home with the helmet (i.e. cried for an hour and a half) and

on and off

> since then. He sleeps through the night, but his naps have been

hit or

> miss. He's had some pink spots, which have faded within an hour.

However,

> today he woke up with some redness by the right side of his ear

and right

> side of the forehead (affected side). Otherwise he seems to

tolerate the

> band.

>

> Reactions to Malcolm's helmet have been mixed. The first person

who saw his

> band told me that his son wore one five years ago. Two older

mothers

> compared it to club feet, which I thought was another good way to

compare

> it. Other people have stared, glared or made odd comments. I'm

trying to

> take the reactions in my stride and to conserve my energy for my

son's CT

> weekly adjustments, pt, and other medical appts.

>

> FYI, a week before Malcolm got his band, I saw Dr. Goodrich

> (www.jamestgoodrich.net <http://www.jamestgoodrich.net/> ) at

Montefiore

> Children's Hospital in the Bronx. Dr. Goodrich is a top pediatric

> neurosurgeon and cranial specialist who specially specializes in

skull

> deformities, including plagiocephaly. He told me that no amount

of pt would

> correct my son's plagio (remember, I was the one with the crazy pt

who said

> to apply pressure with my fingertips to the base of my son's

skull). He

> said that my son would make a good candidate for the helmet and

would not

> get correction without medical intervention. He advises parents

to try

> repositioning for 2-3 months. If they haven't seen any or little

> improvement after trying repo, then it's time for parents to

consider

> medical intervention. In in-utero cases like Malcolm's (he was

born with

> plagio and tort as his head was wedged against my right rib cage

since week

> 25 or so), plagio is more intractable and requires medical

intervention.

>

> So, here I am with a top pediatric neurosurgeon and cranial facial

> specialist who basically confirms what I already knew, supports my

decision

> and contradicts what other pediatricians and pts were telling me.

Here I

> can say that I'm not nuts. It's not me; it's them!!! And I have

the good

> doctor to back me up.

>

> Carolyn in NYC

>

> Mum to Malcolm - 4 mos - born with plagio and tort - Doc band 3/27

how soon after birth was he diganosed? My son was born 3 weeks early

because he was tied up in the imbilical cord so he had limited

movement inutero.. yet when he was born he had a flat head and the

dr or pediatrican never said a thing till he was 2 months then form

2 -6 month she just said to reposition and at 6 months he was

diganosed with plagio and tort.. i think an earlier diagnoses would

have been nice so how long untill your son was?

>

For more plagio info

March 31, 2006