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

[Guest guest]

I agree with the other poster.... your son needs a new doctor. If your ped isn't

comfortable prescribing he should refer you to a specialist comfortable with

plagio and banding. If he won't prescribe, and won't refer, you need to see

someone else. (and a referral to a specialist with a long wait list won't help

much either at this point).

-christine

sydney, 4.5 yrs, starband grad

>

> 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]

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.

> >

>