Re: Re: I need help and advice, doctors wont prescribe helmet for our son

[Guest guest]

Hi,

I really hope you can get the helmet ordered very soon! Time is very

critical for you now. Even if it takes switching doctors, I would do

it.

You must be in the Bay Area, since you are going to CIRS Palo Alto.

Bob is a great ortho, but a little harsh. He let us keep the helmet on

late. I would get your helmet from him.

On Tues, I recommend you call and make the next osteopath appointment

with Marc Rosen. Tell them your son has moderate plagio and that he is

18 months, and that you really want to get in as soon as possible,

since age is a factor. This is in addition to getting the helmet.

You also might want to join the older plagio group. Hope things go

better.

Best,

Kathy

estrellavila1 wrote:

Ok, so let me clarify further on what is going on with my situation. I

have Kaiser, and our insurance would actually cover 100% of the helmet

so I really dont know why they are fighting me on this.

Here is a timeline on the cluster* that is my son's flat head.

-Son born 1/24/09, 7 wks early, spends 16 days in NICU

-At 2 mo old I note flat spot, first pediatrician says nothing. Somehow

thru mom intuition I knew to let my kid sleep on stomach instead of

back of head to work on the torticollis

-At 4 mo apt I bring up flat head after ped says nothing. Ped says "it

will go away on its own, here is the repositioning info" I do

everything like I have OCD trying to make my son's head better

-At 6 mo, not enough improvement. I had been attending weekly mommy and

me classes and talked to other parents who were getting a helmet, and

my kid's head was worse than theirs. I find out how process works and

ask ped to send us to the "head/helmet class" with plastic surgery

department. My ped does not know how to do it, so I have to call and

make another ped in same office send referral.

-At seven and a half months my son finally gets to see plastic

surgery/neurosurgeon in Kaiser to see if helmet is what he needs.

Specialist measures son's head with calipers and says its 8mm diff, and

it will go away on its own. I am filled with joy and am so glad my

interventions helped.

-12 mo still not seeing that much improvement but I am not a doc and

just go with what I was told

-18 mo we have swim lessons, and his head is Noticeably assymetrical to

the point other parents were looking at it. I start freaking out and

email pediatrician and the 'specialist' asking if we can do a follow up

and make sure it is still ok. Specialist says since it was only an 8mm

diff there is nothing but time. Ped says talk to specialist.

-Last week I go to CIRS in Palo Alto where everyone from Kaiser gets

sent that might need a helmet for a second opinion. They scan my kids

had and I was hoping they would just say I was being a paranoid mom but

no, I hear, "your kid has 14.8mm diff" and the Orthotist is upset that

I did not come to him sooner. At this point I am in a full blown panic

-I frantically email pediatrician begging for her to write prescription

since specialist did not seem very willing to. She tells me she cant

because it is "not in her scope" and to ask specialist. I write to the

specialist and BEG for help and to have him call me back. The next day

my pediatrician tells me "sorry there is nothing we can do".

I frantically call the plastic surgery/neursurgery department trying to

get a neurosurgeon to look at the scan of my son's head and to get

someone to write the prescription. I finally get a call back and no one

can do it and then I get a monologue about how a helmet has "risks" and

it wont be worth it and my son is only "mildly" plagio. I have been a

complete hysterical mess for the last few days over this.

The Orthotist said if I need to go outside of Kaiser to get the

prescription there are other pediatricians that are "helmet friendly"

but due to holiday weeked all that has to wait until next week. Going

this route I have to pay for helmet out of pocket and dont know how to

do any appeals with Kaiser for this especially due to the time issue.

If anyone has any ideas I would appreciate it. I am absolutely going to

switch pediatricians or get rid of Kaiser. I have had Kaiser my whole

life and love it but this is just a complete mess. Something about it

being your child really makes it more unbearable.

> >

> > As you all know there is a window to start helmet therapy but

our son is on the older side of it. He is 19 months, corrected age of

17 months. He was scanned and definetly needs a helmet and our doctors

will not prescribe it due to some unknown reason that no one will tell

us. He has a difference of 14.8mm which we learned from the scan. At a

preliminary measurement at 8 months old he was 8 mm (using calipers).

If we had known his true measurement we would have immediately put him

in a helmet.

> >

> > How can I get my physicians to help with this? I am

incredibly upset and frustrated at the system.

> >

> > Thanks.

> >

>

[Guest guest]

Sorry but who is Marc Rosen? Does he work at CIRS too?

I am still really new at this and I am glad I have you guys to educate me in my crash course on this matter.

I am praying and hoping that Tues morning Bob can get ahold of Menard and make it happen. Estrella

From: Kathy Lora Jensen <kathylorajensen@...>Plagiocephaly Sent: Sat, September 4, 2010 11:02:50 AMSubject: Re: Re: I need help and advice, doctors wont prescribe helmet for our son

Hi,I really hope you can get the helmet ordered very soon! Time is very critical for you now. Even if it takes switching doctors, I would do it.You must be in the Bay Area, since you are going to CIRS Palo Alto. Bob is a great ortho, but a little harsh. He let us keep the helmet on late. I would get your helmet from him.On Tues, I recommend you call and make the next osteopath appointment with Marc Rosen. Tell them your son has moderate plagio and that he is 18 months, and that you really want to get in as soon as possible, since age is a factor. This is in addition to getting the helmet.You also might want to join the older plagio group. Hope things go better.Best,Kathyestrellavila1 wrote:

Ok, so let me clarify further on what is going on with my situation. I have Kaiser, and our insurance would actually cover 100% of the helmet so I really dont know why they are fighting me on this.Here is a timeline on the cluster* that is my son's flat head.-Son born 1/24/09, 7 wks early, spends 16 days in NICU-At 2 mo old I note flat spot, first pediatrician says nothing. Somehow thru mom intuition I knew to let my kid sleep on stomach instead of back of head to work on the torticollis-At 4 mo apt I bring up flat head after ped says nothing. Ped says "it will go away on its own, here is the repositioning info" I do everything like I have OCD trying to make my son's head better-At 6 mo, not enough improvement. I had been attending weekly mommy and me classes and talked to other parents who were getting a helmet, and my kid's head was worse than theirs. I find out how process works and ask ped to send us to the "head/helmet

class" with plastic surgery department. My ped does not know how to do it, so I have to call and make another ped in same office send referral.-At seven and a half months my son finally gets to see plastic surgery/neurosurgeon in Kaiser to see if helmet is what he needs. Specialist measures son's head with calipers and says its 8mm diff, and it will go away on its own. I am filled with joy and am so glad my interventions helped.-12 mo still not seeing that much improvement but I am not a doc and just go with what I was told-18 mo we have swim lessons, and his head is Noticeably assymetrical to the point other parents were looking at it. I start freaking out and email pediatrician and the 'specialist' asking if we can do a follow up and make sure it is still ok. Specialist says since it was only an 8mm diff there is nothing but time. Ped says talk to specialist.-Last week I go to CIRS in Palo Alto where everyone from Kaiser gets sent that

might need a helmet for a second opinion. They scan my kids had and I was hoping they would just say I was being a paranoid mom but no, I hear, "your kid has 14.8mm diff" and the Orthotist is upset that I did not come to him sooner. At this point I am in a full blown panic-I frantically email pediatrician begging for her to write prescription since specialist did not seem very willing to. She tells me she cant because it is "not in her scope" and to ask specialist. I write to the specialist and BEG for help and to have him call me back. The next day my pediatrician tells me "sorry there is nothing we can do". I frantically call the plastic surgery/neursurgery department trying to get a neurosurgeon to look at the scan of my son's head and to get someone to write the prescription. I finally get a call back and no one can do it and then I get a monologue about how a helmet has "risks" and it wont be worth it and my son is only "mildly" plagio.

I have been a complete hysterical mess for the last few days over this.The Orthotist said if I need to go outside of Kaiser to get the prescription there are other pediatricians that are "helmet friendly" but due to holiday weeked all that has to wait until next week. Going this route I have to pay for helmet out of pocket and dont know how to do any appeals with Kaiser for this especially due to the time issue.If anyone has any ideas I would appreciate it. I am absolutely going to switch pediatricians or get rid of Kaiser. I have had Kaiser my whole life and love it but this is just a complete mess. Something about it being your child really makes it more unbearable.> >> > As you all know there is a window to start helmet therapy but our son is on the older side of it. He is 19 months, corrected age of 17 months. He was scanned and definetly needs a helmet and our doctors will not

prescribe it due to some unknown reason that no one will tell us. He has a difference of 14.8mm which we learned from the scan. At a preliminary measurement at 8 months old he was 8 mm (using calipers). If we had known his true measurement we would have immediately put him in a helmet.> > > > How can I get my physicians to help with this? I am incredibly upset and frustrated at the system. > > > > Thanks.> >>

[Guest guest]

He is a highly recommended osteopath in Portolla Valley.  He helped my

son's plagio in conjunction with the helmet.  He has a site on the

internet, if you want more information.  -Kathy

Estrella Vila wrote:

 

Sorry but who is Marc Rosen? Does he work at CIRS too?

 

I am still really new at this and I am glad I have you guys to

educate me in my crash course on this matter.

I am praying and hoping that Tues morning Bob can get ahold of

Menard and make it happen.

 

Estrella

From:

Kathy Lora Jensen <kathylorajensen@...>

To:

Plagiocephaly

Sent: Sat, September

4, 2010 11:02:50 AM

Subject: Re:

Re: I need help and advice, doctors wont prescribe helmet for our son

 

Hi,

I really hope you can get the helmet ordered very soon!  Time is very

critical for you now.  Even if it takes switching doctors, I would do

it.

You must be in the Bay Area, since you are going to CIRS Palo Alto. 

Bob is a great ortho, but a little harsh.  He let us keep the helmet on

late.  I would get your helmet from him.

On Tues, I recommend you call and make the next osteopath appointment

with Marc Rosen.  Tell them your son has moderate plagio and that he is

18 months, and that you really want to get in as soon as possible,

since age is a factor.  This is in addition to getting the helmet.

You also might want to join the older plagio group.  Hope things go

better.

Best,

Kathy

estrellavila1 wrote:

 

Ok, so let me clarify further on what is going on with my situation. I

have Kaiser, and our insurance would actually cover 100% of the helmet

so I really dont know why they are fighting me on this.

Here is a timeline on the cluster* that is my son's flat head.

-Son born 1/24/09, 7 wks early, spends 16 days in NICU

-At 2 mo old I note flat spot, first pediatrician says nothing. Somehow

thru mom intuition I knew to let my kid sleep on stomach instead of

back of head to work on the torticollis

-At 4 mo apt I bring up flat head after ped says nothing. Ped says "it

will go away on its own, here is the repositioning info" I do

everything like I have OCD trying to make my son's head better

-At 6 mo, not enough improvement. I had been attending weekly mommy and

me classes and talked to other parents who were getting a helmet, and

my kid's head was worse than theirs. I find out how process works and

ask ped to send us to the "head/helmet class" with plastic surgery

department. My ped does not know how to do it, so I have to call and

make another ped in same office send referral.

-At seven and a half months my son finally gets to see plastic

surgery/neurosurgeon in Kaiser to see if helmet is what he needs.

Specialist measures son's head with calipers and says its 8mm diff, and

it will go away on its own. I am filled with joy and am so glad my

interventions helped.

-12 mo still not seeing that much improvement but I am not a doc and

just go with what I was told

-18 mo we have swim lessons, and his head is Noticeably assymetrical to

the point other parents were looking at it. I start freaking out and

email pediatrician and the 'specialist' asking if we can do a follow up

and make sure it is still ok. Specialist says since it was only an 8mm

diff there is nothing but time. Ped says talk to specialist.

-Last week I go to CIRS in Palo Alto where everyone from Kaiser gets

sent that might need a helmet for a second opinion. They scan my kids

had and I was hoping they would just say I was being a paranoid mom but

no, I hear, "your kid has 14.8mm diff" and the Orthotist is upset that

I did not come to him sooner. At this point I am in a full blown panic

-I frantically email pediatrician begging for her to write prescription

since specialist did not seem very willing to. She tells me she cant

because it is "not in her scope" and to ask specialist. I write to the

specialist and BEG for help and to have him call me back. The next day

my pediatrician tells me "sorry there is nothing we can do".

I frantically call the plastic surgery/neursurgery department trying to

get a neurosurgeon to look at the scan of my son's head and to get

someone to write the prescription. I finally get a call back and no one

can do it and then I get a monologue about how a helmet has "risks" and

it wont be worth it and my son is only "mildly" plagio. I have been a

complete hysterical mess for the last few days over this.

The Orthotist said if I need to go outside of Kaiser to get the

prescription there are other pediatricians that are "helmet friendly"

but due to holiday weeked all that has to wait until next week. Going

this route I have to pay for helmet out of pocket and dont know how to

do any appeals with Kaiser for this especially due to the time issue.

If anyone has any ideas I would appreciate it. I am absolutely going to

switch pediatricians or get rid of Kaiser. I have had Kaiser my whole

life and love it but this is just a complete mess. Something about it

being your child really makes it more unbearable.

> >

> > As you all know there is a window to start helmet therapy but

our son is on the older side of it. He is 19 months, corrected age of

17 months. He was scanned and definetly needs a helmet and our doctors

will not prescribe it due to some unknown reason that no one will tell

us. He has a difference of 14.8mm which we learned from the scan. At a

preliminary measurement at 8 months old he was 8 mm (using calipers).

If we had known his true measurement we would have immediately put him

in a helmet.

> >

> > How can I get my physicians to help with this? I am

incredibly upset and frustrated at the system.

> >

> > Thanks.

> >

>