Re: Pediatrician and Neuro surgeon are not ready - DR Referrals

[Guest guest]

Hi Chanda!

I live in San Dimas, CA (near Raging Waters) and my son has the

DOCBand and we attend the Pasadena, CA office. My son also has

Brachy. If you need referral for pediatrician OR nuerologist, I have

had great support from both of my son's doctors. In fact, they have

both monitored his case closely asking for updates. One asks because

he fears me (I am Mommy on a Mission; TO ROUND MY SON'S HEAD!)... the

other because he's just a NICE guy.

Pediatrician - Dr. Pak, Covina (will RX, easy to get appt)

Nuerologist - Dr. Imbus, Arcadia (RX'd my son's helmet as I

asked to see nuerologist for second opinion, hard to get appt)

While our insurance would have covered some off-the-shelf helmet, we

paid out-of-pocket for the DOCBand. (Decision was based on MANY DAYS

worth of research) The staff at Pasadena CT are WONDERFUL! Alissa is

the head clinician and has a lot of experience. Alissa also treats

patients in the San Diego office.

Most of us have been there, at the cross-roads you face - to band or

not and if you band, how do you go about doing it... Follow your

motherly instint as you have been!!! If you feel that a band is

needed, you are probably right. I always knew that my son's head

wouldn't round out yet we repositioned (per request of pediatrician)

for two months prior to banding to see if things would get better and

NOPE, NADA, ZIPPO! It was only later I found out that repositioning

is a lost cause for Brachy (see Files link). I should have listened

to MY gut feeling from the beginning instead of my husband, family,

friends and pediatrician.

Good luck and please feel free to email me directly if you have any

questions. I am not always able to get online to the group.

Melinda

San Dimas, CA

Mommy to Keegan - Tort(resolved)/Plagio/Brachy - DOCBand #2 - 4

weeks, 1 day

> From:

> Sandy Ruff <sandysruff@...>

>

> Subject: Re: Pediatrician and Neuro surgeon are not

ready to give

> prescription for Helmet

>

> Plagiocephaly

>

> Date: Wednesday, August 13, 2008, 3:39 AM

>

>

>

> I am so sorry!  What city are you in?  If you are close to

> a Cranial Technologies, I would suggest going for a free

evaluation. 

> They will provide a photo study and measurements you can give

to both your

> neuro and ped.  Perhaps the numbers and photos would convince

them to

> provide the referral.  If not, I would ask Cranial Tech (or

whatever

> clinic you are close to - Star, Hanger, etc) for a list of a few

> pediatricians in your area who have made previous referrals -

and then I

> would SWITCH!

>

>

>

> You are doing the right thing by being a strong advocate for

your

> child.  It sounds as though you have a couple of " old

> school " doctors who believe the head will round itself out on

its

> own.  I believe this may have been true twenty years ago when

babies

> slept on their tummies most of the time, but I sadly hear case

after case

> of parents who were told it would remedy itself - and then it

didn't. 

> Just tonight we were in a restaurant and a family stopped us to

say they

> were happy we had our baby in a band - because they listened to

their pediatrician

> and now it's too late to correct their son's flat head.

>

>

>

> Please list your city and perhaps someone else on this board

can refer you

> to their pediatrician so you can get the referral you need.

>

>

>

> Kindly,

>

> Sandy

>

> mom to Lyla - 8 months (10 weeks in DocBand)

>

> and Owen 4

>

>

>  

>

> -----

> Original Message ----

>

> From: chandamamanunenu <chandamamanunenu@...>

>

> Plagiocephaly

>

> Sent: Tuesday, August 12, 2008 10:09:31 PM

>

> Subject: Pediatrician and Neuro surgeon are not ready

to give

> prescription for Helmet

>

> Hi

>

>

>

> My 6 1/2 month son has very bad flat head on his back and also

has

>

> some flatness on his right side. We noticed it when he was 2

months

>

> old. Our pediatrician asked me to do aggressive repositioning .

At

>

> that time, I was completely ignorant of this flat head problem

and

>

> could not do aggressive repositioning. But I made sure he was

not on

>

> his back in the day time. My baby started sleeping through the

nights

>

> from his second month itself and this increased his flat head a

lot.

>

> At his 4th month check up, the pediatrician referred him to a

neuro

>

> surgeon. The neuro surgeon asked us to reposition the baby's

head and

>

> see if it changes anything . We have been repositioning him at

night

>

> times too. I have been making him sleep on his left side .

>

>

>

> Now he is 61/2 months old and we don't see any significant

change in

>

> his head shape. He has severe flat head on the back and some

flatness

>

> on the right. So we asked the neuro surgeon to give

prescription for a

>

> helmet hoping that we will get our baby start on helmet ASAP

and he

>

> would have a nice round head in 3-4 months. To our surprise,

the neuro

>

> surgeon is not ready to put the baby on helmet. Moreover he

says by

>

> the time the baby goes to school, the flat head would be

unnoticeable.

>

> We are not convinced with it because he has severe flat head.

So I

>

> contacted my pediatrician hoping she will understand and give

>

> prescription for helmet. But she said she would not do that and

asked

>

> me to contact the neuro surgeon again to see he if he will

agree this

>

> time. This is so frustrating .

>

>

>

> I don't have any family here for support . I am really

frustrated and

>

> depressed. I want to do what ever I can do for my baby to help

with

>

> his flat head. Has any of you guys ever had such a situation?

Any

>

> advise would be very helpful.

>

>

>

> Thanks

>