Re: Please help - our 18 mo baby plagiocephaly is not getting better

May 6, 2010

Plagio babies heads tend to grow in the shape they already are so the

plagio will stay the same unless forces like a helmet or repositioning

act to redirect the growth. Basically their head shape stays the same

their head just gets bigger.

At 18 month old it is almost too late to get a band. Consults are

free so I would run to the nearest helmet provider today or the next

available appt they have. They can give you actual measurements of

her head that will tell you if she is mild, moderate or severe. We

had a neurosurgeon tell us my sons head was mild and he actually

measured in the severe range.

You can check out the websites for www.cranialtech.com.

www.orthoamerica.com and then google for hanger orthotics and check

them, they are the 3 major providers and their sites should tell you

if they have a location nearby. We only had hanger nearby and they

said they couldn't fix my sons ears as well so we ended up having to

drive 2 hrs each way to the nearet cranial tech. Now there is also a

starband (orthoamerica) provider local to me

On 5/6/10, gilles_drieu <gdrieu@...> wrote:

> Hi,

>

> Our daughter is almost 18 months. We have observed her plagiocephaly since

> she was 7 months (mainly). We then asked the pediatrician what we should do

> and she said that we simply should force her to sleep on her side with a

> blanket behind her back. As you might know, it is not really efficient and

> it didn't change a thing. The doctor also said that it should also round up

> on its own over time (by the time she is 2 or 3 yo). We were not convinced

> and actually switched to a second pediatrician. Same conclusion but this

> time we finally got an appointment with a specialist. He acknowledged the

> plagiocephaly but said that it was really mild and wasn't even sure that he

> would have recommended a helmet when she was 7/8 month old. He said that it

> will round up a little more but slower. Our daughter is now 18 mo and I am

> VERY worried that the " triangle " shape of her head is getting worse. My wife

> and I are miserable on this topic and have NO idea what to do at this point.

> My wife believes the pediatrician when he promises us that our baby's head

> will round up by the time she is 2.5 or 3. My wife thinks she sees it

> getting better but I don't.

>

> I think I am observing her head grow in the wrong direction (top right and

> left sides - like in a triangular shape) rather than pushing towards the

> back. How is a baby's head supposed to grow? Is it possible that due to the

> plagiocephaly, the skull plates are evolving in the wrong directions?

>

> Any feedback, advice etc. is welcome. What can we do? Do you know the best

> specialist on this matter in San Francisco?

>

> Thanks,

>

> -G.

>

--

Sent from my mobile device

-mommy to Emma, Becca, ,

, , and baby girl no name (yeah I know, nothing new, does

ever pick a name in a timely manner?) July 2010

May 6, 2010

I understand your concern since your child is almost too old for treatment. I

agree with the last post. Get an evaluation so you can find out for certain

whether the pediatrician is correct that it is mild. It's much better to get

actual measurements to determine whether it's mild or not. You have two options.

1. You can make an appointment with a Craniofacial Team (CFT) member - usually

the neurosurgeon actually sees the child to determine if there is a need for

treatment. Be careful who you see if you do this. Some are proactive, and some

are dismissive. I haven't heard anything good or bad about CA CFT's. If you want

to find a CFT, use the link below.

Craniofacial Teams (CFT) in California:

(FYI - CPT = Cleft Palate Team)

http://www.cleftline.org/team_listings/states_c

2. This is what I suggest you do. You can go for an evaluation through the

actual orthotic helmet/band provider. They measure and see if your child needs a

helmet/band. I did this through Cranial Tech, and the initial assessment was

free. I don't know about Orthomerica and Hanger, but you can call and ask them.

See the contact info below.

Orthomerica (STAR Band)in Oakland:

Center for Independent Rehabilitative Services, Inc.

Bob Paterson, CO

Amy , CPO

3260 Ash Street

Palo Alto, CA 94306

650-462-0102, FAX 650-462-0107

Email: amynfoster@...

Email: bobco1238@...

Trish , CO

430 40th Street

Oakland, CA 94609

510-653-9834

Email: tcollins22@...

Cranial Technologies (DOC Band)in Pasadena:

http://www.cranialtech.com/index.php?option=com_content & view=category & layout=blo\

g & id=65 & Itemid=67

Hanger Orthotics in San Francisco:

http://www.hanger.com/locations/Pages/Display.aspx?AVC=060000

Good Luck!!!

> > Hi,

> >

> > Our daughter is almost 18 months. We have observed her plagiocephaly since

> > she was 7 months (mainly). We then asked the pediatrician what we should do

> > and she said that we simply should force her to sleep on her side with a

> > blanket behind her back. As you might know, it is not really efficient and

> > it didn't change a thing. The doctor also said that it should also round up

> > on its own over time (by the time she is 2 or 3 yo). We were not convinced

> > and actually switched to a second pediatrician. Same conclusion but this

> > time we finally got an appointment with a specialist. He acknowledged the

> > plagiocephaly but said that it was really mild and wasn't even sure that he

> > would have recommended a helmet when she was 7/8 month old. He said that it

> > will round up a little more but slower. Our daughter is now 18 mo and I am

> > VERY worried that the " triangle " shape of her head is getting worse. My wife

> > and I are miserable on this topic and have NO idea what to do at this point.

> > My wife believes the pediatrician when he promises us that our baby's head

> > will round up by the time she is 2.5 or 3. My wife thinks she sees it

> > getting better but I don't.

> >

> > I think I am observing her head grow in the wrong direction (top right and

> > left sides - like in a triangular shape) rather than pushing towards the

> > back. How is a baby's head supposed to grow? Is it possible that due to the

> > plagiocephaly, the skull plates are evolving in the wrong directions?

> >

> > Any feedback, advice etc. is welcome. What can we do? Do you know the best

> > specialist on this matter in San Francisco?

> >

> > Thanks,

> >

> > -G.

> >

>

> --

> Sent from my mobile device

>

> -mommy to Emma, Becca, ,

> , , and baby girl no name (yeah I know, nothing new, does

> ever pick a name in a timely manner?) July 2010

>

May 6, 2010

Hi,

I would start treating ASAP! My son is 23 months and with aggressive

treatment it has improved some since 18 months. I still hope for

more. My 5.5 year old also has very mild plagio and without treatment

I think it did not improve.

We are in Mountain View, CA. We use CIRS in Palo Alto, which has

experienced orthos. We've been happy. There is also a CIRS in Oakland

that I have read good things about. I am not sure how late these

places will start a helmet, but it is worth a try. CIRS in Palo Alto

has let us keep our helmet on and they do not push us to take it off.

They may tell you it won't help much, but at least one of the orthos at

Palo Alto CIRS tells you the worst; although he is an extremely

effective ortho. It is true you probably won't get outstanding

improvement, but you could probably get some. If these places don't

work, I would travel to CT in San Diego or Pasadena.

Also, from your description, I would definitely pursue alternative

treatments. My toddler's head also kept growing in an odd way until we

started treatment around 12 months. He has benefited greatly from

alternative treatments. Marc Rosen in Portola Valley could probably

help. He is a top notched osteopath. Call now since there is a wait.

I've heard his wife also does cranial work, so you can schedule with

her while you wait. We have also used a PT in Palo Alto, a CST in

Mountain View, and a chiro in Felton, and they have all helped. (My

5.5 year old started seeing the CST about a months ago, but my toddler

hasn't seen her yet.) Let me know if you want contact information.

Good luck and keep us updated.

Kathy, mom to 23 months and 5.5 years

gilles_drieu wrote:

Hi,

Our daughter is almost 18 months. We have observed her plagiocephaly

since she was 7 months (mainly). We then asked the pediatrician what we

should do and she said that we simply should force her to sleep on her

side with a blanket behind her back. As you might know, it is not

really efficient and it didn't change a thing. The doctor also said

that it should also round up on its own over time (by the time she is 2

or 3 yo). We were not convinced and actually switched to a second

pediatrician. Same conclusion but this time we finally got an

appointment with a specialist. He acknowledged the plagiocephaly but

said that it was really mild and wasn't even sure that he would have

recommended a helmet when she was 7/8 month old. He said that it will

round up a little more but slower. Our daughter is now 18 mo and I am

VERY worried that the "triangle" shape of her head is getting worse. My

wife and I are miserable on this topic and have NO idea what to do at

this point. My wife believes the pediatrician when he promises us that

our baby's head will round up by the time she is 2.5 or 3. My wife

thinks she sees it getting better but I don't.

I think I am observing her head grow in the wrong direction (top right

and left sides - like in a triangular shape) rather than pushing

towards the back. How is a baby's head supposed to grow? Is it possible

that due to the plagiocephaly, the skull plates are evolving in the

wrong directions?

Any feedback, advice etc. is welcome. What can we do? Do you know the

best specialist on this matter in San Francisco?

Thanks,

-G.

May 6, 2010

I would go straight to CIRS for their next available appointment. My

husband had our pediatrician fax over the referral. She did this even

though she had never noticed the plagio despite it being obvious. Do

not wait for insurance and deal with this after ordering the helmet.

Our insurance ended up paying after a few months. If CIRS won't band,

I would travel to CT in southern CA.

-Kathy, mom to 23 months

stephaniebilliel wrote:

I understand your concern since your child is almost too old for

treatment. I agree with the last post. Get an evaluation so you can

find out for certain whether the pediatrician is correct that it is

mild. It's much better to get actual measurements to determine whether

it's mild or not. You have two options. 1. You can make an appointment

with a Craniofacial Team (CFT) member - usually the neurosurgeon

actually sees the child to determine if there is a need for treatment.

Be careful who you see if you do this. Some are proactive, and some are

dismissive. I haven't heard anything good or bad about CA CFT's. If you

want to find a CFT, use the link below.

Craniofacial Teams (CFT) in California:

(FYI - CPT = Cleft Palate Team)

http://www.cleftline.org/team_listings/states_c

2. This is what I suggest you do. You can go for an evaluation through

the actual orthotic helmet/band provider. They measure and see if your

child needs a helmet/band. I did this through Cranial Tech, and the

initial assessment was free. I don't know about Orthomerica and Hanger,

but you can call and ask them. See the contact info below.

Orthomerica (STAR Band)in Oakland:

Center for Independent Rehabilitative Services, Inc.

Bob Paterson, CO

Amy , CPO

3260 Ash Street

Palo Alto, CA 94306

650-462-0102, FAX 650-462-0107

Email: amynfostergmail

Email: bobco1238aol

Trish , CO

430 40th Street

Oakland, CA 94609

510-653-9834

Email: tcollins22gmail

Cranial Technologies (DOC Band)in Pasadena:

http://www.cranialtech.com/index.php?option=com_content & view=category & layout=blog & id=65 & Itemid=67

Hanger Orthotics in San Francisco:

http://www.hanger.com/locations/Pages/Display.aspx?AVC=060000

Good Luck!!!

> > Hi,

> >

> > Our daughter is almost 18 months. We have observed her

plagiocephaly since

> > she was 7 months (mainly). We then asked the pediatrician

what we should do

> > and she said that we simply should force her to sleep on her

side with a

> > blanket behind her back. As you might know, it is not really

efficient and

> > it didn't change a thing. The doctor also said that it should

also round up

> > on its own over time (by the time she is 2 or 3 yo). We were

not convinced

> > and actually switched to a second pediatrician. Same

conclusion but this

> > time we finally got an appointment with a specialist. He

acknowledged the

> > plagiocephaly but said that it was really mild and wasn't

even sure that he

> > would have recommended a helmet when she was 7/8 month old.

He said that it

> > will round up a little more but slower. Our daughter is now

18 mo and I am

> > VERY worried that the "triangle" shape of her head is getting

worse. My wife

> > and I are miserable on this topic and have NO idea what to do

at this point.

> > My wife believes the pediatrician when he promises us that

our baby's head

> > will round up by the time she is 2.5 or 3. My wife thinks she

sees it

> > getting better but I don't.

> >

> > I think I am observing her head grow in the wrong direction

(top right and

> > left sides - like in a triangular shape) rather than pushing

towards the

> > back. How is a baby's head supposed to grow? Is it possible

that due to the

> > plagiocephaly, the skull plates are evolving in the wrong

directions?

> >

> > Any feedback, advice etc. is welcome. What can we do? Do you

know the best

> > specialist on this matter in San Francisco?

> >

> > Thanks,

> >

> > -G.

> >

>

> --

> Sent from my mobile device

>

> -mommy to Emma, Becca, ,

> , , and baby girl no name (yeah I know, nothing new, does

> ever pick a name in a timely manner?) July 2010

>

May 6, 2010

Who do you have for insurance? We have Kaiser and saw a great plastic

surgeon in Santa Clara, Dr. Menard. I would follow the advice that others

have already given you and go get a consultation at CIRS, either Oakland or

Palo Alto, whichever location is most convenient for you. We went to

Oakland and had a great experience there.

Molly

Novato, California

Nicolas, 4, tort & plagio, STARband (CIRS Oakland) 4/24/06-9/12/06,

Graduate!

, 7

, 10

Please help - our 18 mo baby plagiocephaly is not getting

better

Hi,

Our daughter is almost 18 months. We have observed her plagiocephaly since

she was 7 months (mainly). We then asked the pediatrician what we should do

and she said that we simply should force her to sleep on her side with a

blanket behind her back. As you might know, it is not really efficient and

it didn't change a thing. The doctor also said that it should also round up

on its own over time (by the time she is 2 or 3 yo). We were not convinced

and actually switched to a second pediatrician. Same conclusion but this

time we finally got an appointment with a specialist. He acknowledged the

plagiocephaly but said that it was really mild and wasn't even sure that he

would have recommended a helmet when she was 7/8 month old. He said that it

will round up a little more but slower. Our daughter is now 18 mo and I am

VERY worried that the " triangle " shape of her head is getting worse. My wife

and I are miserable on this topic and have NO idea what to do at this point.

My wife beli

eves the pediatrician when he promises us that our baby's head will round

up by the time she is 2.5 or 3. My wife thinks she sees it getting better

but I don't.

I think I am observing her head grow in the wrong direction (top right and

left sides - like in a triangular shape) rather than pushing towards the

back. How is a baby's head supposed to grow? Is it possible that due to the

plagiocephaly, the skull plates are evolving in the wrong directions?

Any feedback, advice etc. is welcome. What can we do? Do you know the best

specialist on this matter in San Francisco?

Thanks,

-G.

------------------------------------

For more plagio info

May 6, 2010

I also would go with the band as opposed to neurosurgeon and therefore

didn't mention the later for 2 reasons. 1) my experince with a ns was

he was dismissive and didn't even measure before saying it was minor

and would round out and 2) here the wait was over 3 month to get in

whereas I was able to get in for band consults within 1-2 wks tops and

at 18 month you don't have 3 month to spare (my son was 5 month when

referred to ns so we had time to wait for the appt). But you could

always call to see what the waits are

On 5/6/10, stephaniebilliel <SBilliel@...> wrote:

> I understand your concern since your child is almost too old for treatment.

> I agree with the last post. Get an evaluation so you can find out for

> certain whether the pediatrician is correct that it is mild. It's much

> better to get actual measurements to determine whether it's mild or not. You

> have two options. 1. You can make an appointment with a Craniofacial Team

> (CFT) member - usually the neurosurgeon actually sees the child to determine

> if there is a need for treatment. Be careful who you see if you do this.

> Some are proactive, and some are dismissive. I haven't heard anything good

> or bad about CA CFT's. If you want to find a CFT, use the link below.

>

> Craniofacial Teams (CFT) in California:

> (FYI - CPT = Cleft Palate Team)

> http://www.cleftline.org/team_listings/states_c

>

> 2. This is what I suggest you do. You can go for an evaluation through the

> actual orthotic helmet/band provider. They measure and see if your child

> needs a helmet/band. I did this through Cranial Tech, and the initial

> assessment was free. I don't know about Orthomerica and Hanger, but you can

> call and ask them. See the contact info below.

>

> Orthomerica (STAR Band)in Oakland:

> Center for Independent Rehabilitative Services, Inc.

> Bob Paterson, CO

> Amy , CPO

> 3260 Ash Street

> Palo Alto, CA 94306

> 650-462-0102, FAX 650-462-0107

> Email: amynfoster@...

> Email: bobco1238@...

>

> Trish , CO

> 430 40th Street

> Oakland, CA 94609

> 510-653-9834

> Email: tcollins22@...

>

> Cranial Technologies (DOC Band)in Pasadena:

>

http://www.cranialtech.com/index.php?option=com_content & view=category & layout=blo\

g & id=65 & Itemid=67

>

> Hanger Orthotics in San Francisco:

> http://www.hanger.com/locations/Pages/Display.aspx?AVC=060000

>

> Good Luck!!!

>

>> > Hi,

>> >

>> > Our daughter is almost 18 months. We have observed her plagiocephaly

>> > since

>> > she was 7 months (mainly). We then asked the pediatrician what we should

>> > do

>> > and she said that we simply should force her to sleep on her side with a

>> > blanket behind her back. As you might know, it is not really efficient

>> > and

>> > it didn't change a thing. The doctor also said that it should also round

>> > up

>> > on its own over time (by the time she is 2 or 3 yo). We were not

>> > convinced

>> > and actually switched to a second pediatrician. Same conclusion but this

>> > time we finally got an appointment with a specialist. He acknowledged

>> > the

>> > plagiocephaly but said that it was really mild and wasn't even sure that

>> > he

>> > would have recommended a helmet when she was 7/8 month old. He said that

>> > it

>> > will round up a little more but slower. Our daughter is now 18 mo and I

>> > am

>> > VERY worried that the " triangle " shape of her head is getting worse. My

>> > wife

>> > and I are miserable on this topic and have NO idea what to do at this

>> > point.

>> > My wife believes the pediatrician when he promises us that our baby's

>> > head

>> > will round up by the time she is 2.5 or 3. My wife thinks she sees it

>> > getting better but I don't.

>> >

>> > I think I am observing her head grow in the wrong direction (top right

>> > and

>> > left sides - like in a triangular shape) rather than pushing towards the

>> > back. How is a baby's head supposed to grow? Is it possible that due to

>> > the

>> > plagiocephaly, the skull plates are evolving in the wrong directions?

>> >

>> > Any feedback, advice etc. is welcome. What can we do? Do you know the

>> > best

>> > specialist on this matter in San Francisco?

>> >

>> > Thanks,

>> >

>> > -G.

>> >

>>

>> --

>> Sent from my mobile device

>>

>> -mommy to Emma, Becca, ,

>> , , and baby girl no name (yeah I know, nothing new, does

>> ever pick a name in a timely manner?) July 2010

>>

>

--

Sent from my mobile device

-mommy to Emma, Becca, ,

, , and baby girl no name (yeah I know, nothing new, does

ever pick a name in a timely manner?) July 2010

May 6, 2010

Thank you very much for the advice, Kathy. I would be very

interested in the contact info.

From:

Plagiocephaly [mailto:Plagiocephaly ] On

Behalf Of Kathy Lora Jensen

Sent: Thursday, May 06, 2010 6:43 AM

Plagiocephaly

Subject: Re: Please help - our 18 mo baby plagiocephaly is not

getting better

Hi,

I would start treating ASAP! My son is 23 months and with aggressive

treatment it has improved some since 18 months. I still hope for

more. My 5.5 year old also has very mild plagio and without treatment I

think it did not improve.

We are in Mountain View, CA. We use CIRS in Palo Alto, which has

experienced orthos. We've been happy. There is also a CIRS in

Oakland that I have read good things about. I am not sure how late these

places will start a helmet, but it is worth a try. CIRS in Palo Alto has

let us keep our helmet on and they do not push us to take it off. They

may tell you it won't help much, but at least one of the orthos at Palo Alto

CIRS tells you the worst; although he is an extremely effective ortho. It

is true you probably won't get outstanding improvement, but you could probably

get some. If these places don't work, I would travel to CT in San Diego

or Pasadena.

Also, from your description, I would definitely pursue alternative

treatments. My toddler's head also kept growing in an odd way until we

started treatment around 12 months. He has benefited greatly from

alternative treatments. Marc Rosen in Portola Valley could probably

help. He is a top notched osteopath. Call now since there is a

wait. I've heard his wife also does cranial work, so you can schedule

with her while you wait. We have also used a PT in Palo Alto, a CST in

Mountain View, and a chiro in Felton, and they have all helped. (My 5.5

year old started seeing the CST about a months ago, but my toddler hasn't seen

her yet.) Let me know if you want contact information.

Good luck and keep us updated.

Kathy, mom to 23 months and 5.5 years

gilles_drieu wrote:

Hi,

Our daughter is almost 18 months. We have observed her plagiocephaly since she

was 7 months (mainly). We then asked the pediatrician what we should do and she

said that we simply should force her to sleep on her side with a blanket behind

her back. As you might know, it is not really efficient and it didn't change a

thing. The doctor also said that it should also round up on its own over time

(by the time she is 2 or 3 yo). We were not convinced and actually switched to

a second pediatrician. Same conclusion but this time we finally got an

appointment with a specialist. He acknowledged the plagiocephaly but said that

it was really mild and wasn't even sure that he would have recommended a helmet

when she was 7/8 month old. He said that it will round up a little more but

slower. Our daughter is now 18 mo and I am VERY worried that the

" triangle " shape of her head is getting worse. My wife and I are

miserable on this topic and have NO idea what to do at this point. My wife

believes the pediatrician when he promises us that our baby's head will round

up by the time she is 2.5 or 3. My wife thinks she sees it getting better but I

don't.

I think I am observing her head grow in the wrong direction (top right and left

sides - like in a triangular shape) rather than pushing towards the back. How

is a baby's head supposed to grow? Is it possible that due to the

plagiocephaly, the skull plates are evolving in the wrong directions?

Any feedback, advice etc. is welcome. What can we do? Do you know the best

specialist on this matter in San Francisco?

Thanks,

-G.

May 6, 2010

Here are the contacts for the local providers we have used and found

helpful. All of these were highly recommended to me, most through PAMP

our local parents group.

Starband provider:

Palo Alto CIRS (650) 462-0102

Both Bob and Amy are highly experienced. Bob might have more

expertise. Amy has a more gentle manner. We went with Bob, since

ultimately we want the best results. We've had nice end results

considering 's age.

PT:

Cheryl Eichner in Palo Alto at 650-868-0343

http://www.integratedhealing.org/practitioners/cheryl.htm

She works with on posture/muscles imbalances. After only a couple

months, I see improvement.

CST:

Judy Ann and she is located at 1220 Pear Ave., Suite I in Mountain

View. Her phone number is 650-575-1408. We started taking my 5.5 year

old here recently, but haven't brought the toddler yet. So far I'm

very impressed.

Chiro along with cranial sacral work:

Dr. Kerri Felton Family Wellness Center (831) 335-9300

We've been taking here for almost a year with good results.

Osteopath:

Marc Rosen at 650-529-0304

http://www.osteodoc.com/index.htm

If Dr. Mark Rosen has a long wait list. I've been told his wife,

Inessa Lagen also does cranio-sacral therapy.

I consider this doctor a must for a plagio/brachy baby in the Bay

Area. For us he treated a few times, and then spaced our appointments

out every couple months.

I would first get the next available appointment for an evaluation with

a helmet provider. Then I would call Dr. Rosen and set up an

appointment. It may take a few calls before they call back. In the

meantime, while you wait for an appointment with Dr. Rosen, I would get

some other cranial work.

I also suggest an evaluation from a PT, since plagio is often

accompanied by torticollis or other related conditions. We thought

didn't need PT and skipped this step until a couple months ago and

then he ended up benefiting from it.

Best,

Kathy

Gilles Drieu wrote:

Thank you very much

for the advice, Kathy. I would be very

interested in the contact info.

From:

Plagiocephaly [mailto:Plagiocephaly ]

On

Behalf Of Kathy Lora Jensen

Sent: Thursday, May 06, 2010 6:43 AM

Plagiocephaly

Subject: Re: Please help - our 18 mo baby

plagiocephaly is not

getting better

Hi,

I would start treating ASAP! My son is 23 months and with aggressive

treatment it has improved some since 18 months. I still hope for

more. My 5.5 year old also has very mild plagio and without treatment

I

think it did not improve.

We are in Mountain View, CA. We use CIRS in Palo Alto, which has

experienced orthos. We've been happy. There is also a CIRS in

Oakland that I have read good things about. I am not sure how late

these

places will start a helmet, but it is worth a try. CIRS in Palo Alto

has

let us keep our helmet on and they do not push us to take it off. They

may tell you it won't help much, but at least one of the orthos at Palo

Alto

CIRS tells you the worst; although he is an extremely effective ortho.

It

is true you probably won't get outstanding improvement, but you could

probably

get some. If these places don't work, I would travel to CT in San

Diego