Re: Re: I need help and advice, doctors wont prescribe KAISER NOR CAL

[Guest guest]

Which Kaiser office/ped are you going to? I've added Kaiser to the subject line

to catch the eye of anyone who might be able to recommend a band friendly Kaiser

doctor. Our Kaiser doctor in Novato/Marin County was band friendly but we still

had to see a specialist to get the prescription. Are you seeing Dr Menard in

Santa Clara? We saw him for a second opinion and used him for our follow up

appointments. If so, perhaps CIRS can mail him the scan results as they seemed

to have a good working relationship with him. We got our prescription from Dr

Le, plastic surgeon in the Richmond office, when we saw him for a first opinion.

Perhaps you can see him for a second opinion and get him to write the

prescription. We got our band from CIRS in Oakland

Molly

Novato CA

Nicolas, STARband Grad

On Sep 4, 2010, at 7:56 AM, " estrellavila1 " <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.

>>>

>>

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>

>

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

>

> For more plagio info

[Guest guest]

Yes we saw Dr. Menard, he is the only Dr. in Santa Clara with the ability to prescribe the helmet apparently. We tried to talk to his resident Dr. Barri and he just shut us down again. Unfortunately Dr. Menard has decided to take yesterday thru the 13th off and he called CIRS in PA but did not leave a message. We actually faxed the scan to Dr. Barri yesterday and hopefully he will talk to Dr. Menard but as of right now it is not looking hopeful. CIRS is going to contact him on Tuesday when Bob , the orthotist comes back in.

Thank you so much for the Dr. Le reference, I am going to talk to CIRS on Tuesday if they cant get Menard on the same page and see if I can get in with Dr. Le. I will drive anywhere for my son and do anything for him to get this helmet started. He really should have had it in the first place is what is killing me. The calipers are just not an accurate measurement. There is seriously no way with all my obsessive repositioning and tummy time we did that he could have gone from an 8 to a 14.8 difference. That just makes no sense, especially since after 6 months repositioning doesn't even create dramatic results like that. His forehead and hear positioning turned out ok when you look at him (prob from all the tummy time and making him sleep on tummy). Its the back of his head that is just really really off.

I hope someone can help us! I will gladly pay for the helmet out of pocket, I just need the darn prescription. Estrella Moeller

From: "Foley, Molly" <mafoley@...>"Plagiocephaly " <Plagiocephaly >Sent: Sat, September 4, 2010 9:07:27 AMSubject: Re: Re: I need help and advice, doctors wont prescribe KAISER NOR CAL

Which Kaiser office/ped are you going to? I've added Kaiser to the subject line to catch the eye of anyone who might be able to recommend a band friendly Kaiser doctor. Our Kaiser doctor in Novato/Marin County was band friendly but we still had to see a specialist to get the prescription. Are you seeing Dr Menard in Santa Clara? We saw him for a second opinion and used him for our follow up appointments. If so, perhaps CIRS can mail him the scan results as they seemed to have a good working relationship with him. We got our prescription from Dr Le, plastic surgeon in the Richmond office, when we saw him for a first opinion. Perhaps you can see him for a second opinion and get him to write the prescription. We got our band from CIRS in OaklandMollyNovato CANicolas, STARband GradOn Sep 4, 2010, at 7:56 AM, "estrellavila1" <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.>>> >> > > > > > ------------------------------------> > For more plagio info