Re: I hope we're not too late!

[Guest guest]

HI & welcome to our group!

You have most definitely come to the right place for all your

questions! I am happy you found us, and also happy you heard about

the DOCband and how it CAN help correct plagio in older infants such

as yours.

My daughter is proof the DOCband works even at an older age. Abby

began her DOCband at age 11.5 mos, she wore one band for 4.5 mos

total & we were able to achieve 50-60% correction of her severe

plagio with the DOCband! I truly cannot be any more pleased with her

results. You can view Abby's before & after band photos at

www.plagiocephaly.org/support then " before & after " .

It is a true shame to hear of yet another pediatrician not taking

plagio seriously & giving you the it'll round on it's own speech.

That is unfortuanlately very common among our group members here. I

hate to hear it.

But what a terrific friend Robyn is. Does her child have any

physical problems today as a result of the plagio? Is her child's

head still misshapen?

Also, did your daughter ever receive physical therapy for her

torticollis? That's a shame that wasn't addressed more seriously by

your ped as well Does her head still tilt one way? Or is it

pretty much resolved (hopefully!)?

I'm not familiar with any New Mexico members, but ya never know.

Hopefully we have one out there for you to help.

Good luck with everything.....and NO IT'S NOT TOO LATE!!!

Please keep us posted & welcme again!

Debbie Abby's mom 3/1/00 DOCgrad 2/16/01-6/22/01

MI

> Hi

>

> I've been reading the files for this group, and have some hope that

I

> can get some successful treatment for my daughter, who will turn 1

> year old on Sept 20 (that will be 10.5 months corrected, if that

> gains

> us any time).

>

> Here are pictures of my twins:

>

> http://home.earthlink.net/~ladelfe/Twins/index.html

>

> The photo of my daughter is almost fully face on, but you'll notice

> her right ear is barely visable. I don't have a picture of her

from

> the top down right now, but her right ear is distinctly back from

the

> left, and her forehead and cheek show similar differences. She was

> my

> " A " twin, and was head down and squashed by her bigger brother for

> most of my pregnancy. The were born at 33 weeks, forceps

delivery.

> Her head was out of shape when she was born, but I was repeatedly

> told

> to reposition her (difficult because of tight neck muscles, but she

> was never diagnosed officially with a muscular problem), and that

it

> would get better. I even made a special appointment at 5 months,

> concerned that we were losing the chance to correct the shape, but

> the

> doctor dismissed my concern, saying she had seen 3 babies for head

> shape that day and my daughter's was the least out of shape. I let

> myself be reasured by the doctor and didn't think much more about

her

> head shape until last month when I re-met an old acquaintance whose

> now-4-year-old was born with facial and scull malformations, and

who

> has been going through a lot of medical intervention. In passing I

> made some comment about the only problem my daughter will have is

> different length ear-pieces when she is fitted for glasses some

day.

> Robyn was not amused, and pointed out possible jaw problems in the

> future, among other things. That made me wonder if the problems I

am

> already having getting her to take solid foods might be related to

> her

> current jaw position (okay, maybe not); and if her chronic ear-

aches,

> which do NOT appear to be caused by infection, are related. Her

> pediatrician is still telling me I'm a silly worried parent, and

> everything is fine.

>

> For the last month, I have made a few efforts to get a second

opinion

> with another pediatrician (they said see a neurologist), with a

> pediatric neurologist (he said he doesn't deal with plagiocephaly,

so

> call the university hospital in Albuquerque), and so on. She has

an

> appointment with a pediatric dentist tomorrow, to get his opinion

on

> the jaw question (interestingly, the dentist has 2 year old

twins).

> I'm still playing phone tag with the university pediatric center.

> ly, though, I thought I had left it too late to do much, so I

> haven't been as persistant as I could have been. Today, though, I

> read an article about DOC-banding success in older children, and

I'm

> thinking it may still work! My next problem is finding a doctor

who

> can help, or who has worked with banding and who agrees that my

> daughter doesn't need it.

>

> So, does anyone here know of a doctor in New Mexico (Santa Fe,

> preferably, Albuquerque okay) who consults on plagiocephaly?

>

> Of course, my next problem would then be my insurance company, but

> first things first....

>

> , mom to and (b. 9/20/2001)

[Guest guest]

,

Welcome to the group! Your adorable twins have the same birthday as

my son Patch, he'll be 4 (just a little fun fact for you!) But I am

also the proud mom of b/g twins, who are now 2, and both have dealt

with plagio. My daughter, Baby A, was also squished way down low for

the majority of my pregnancy, her brother was doing acrobatics and

took up all the room!!

You are definitely not too late to address 's plagio, and I

think the adjusted age really does make a difference. Cranial Tech,

the makers of the DOCband will band a baby up to 24 months.

http://www.cranialtech.com And Orthomerica, makers of the STARband,

will band up to 18 months. http://www.orthomerica.com So you still

have plenty of time, and we do have a quite a few parents that have

started even later than you are, you have received really good

results. Hopefully you can find a doctor or ortho nearby you at one

of those websites. Keep plugging away, and call the university

pediatric center twice a day of you have to! If they say they can't

get you in for awhile, ask to be put on a cancellation list,

hopefully that will get you in sooner.

Keep us posted, we recently were discussing dental appointments here,

so I know a lot of us would be interested to hear what the dentist

has to say in regards to 's jaw. Good luck to you, and

again, welcome to the group!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> Hi

>

> I've been reading the files for this group, and have some hope that

I

> can get some successful treatment for my daughter, who will turn 1

> year old on Sept 20 (that will be 10.5 months corrected, if that

> gains

> us any time).

>

> Here are pictures of my twins:

>

> http://home.earthlink.net/~ladelfe/Twins/index.html

>

> The photo of my daughter is almost fully face on, but you'll notice

> her right ear is barely visable. I don't have a picture of her

from

> the top down right now, but her right ear is distinctly back from

the

> left, and her forehead and cheek show similar differences. She was

> my

> " A " twin, and was head down and squashed by her bigger brother for

> most of my pregnancy. The were born at 33 weeks, forceps

delivery.

> Her head was out of shape when she was born, but I was repeatedly

> told

> to reposition her (difficult because of tight neck muscles, but she

> was never diagnosed officially with a muscular problem), and that

it

> would get better. I even made a special appointment at 5 months,

> concerned that we were losing the chance to correct the shape, but

> the

> doctor dismissed my concern, saying she had seen 3 babies for head

> shape that day and my daughter's was the least out of shape. I let

> myself be reasured by the doctor and didn't think much more about

her

> head shape until last month when I re-met an old acquaintance whose

> now-4-year-old was born with facial and scull malformations, and

who

> has been going through a lot of medical intervention. In passing I

> made some comment about the only problem my daughter will have is

> different length ear-pieces when she is fitted for glasses some

day.

> Robyn was not amused, and pointed out possible jaw problems in the

> future, among other things. That made me wonder if the problems I

am

> already having getting her to take solid foods might be related to

> her

> current jaw position (okay, maybe not); and if her chronic ear-

aches,

> which do NOT appear to be caused by infection, are related. Her

> pediatrician is still telling me I'm a silly worried parent, and

> everything is fine.

>

> For the last month, I have made a few efforts to get a second

opinion

> with another pediatrician (they said see a neurologist), with a

> pediatric neurologist (he said he doesn't deal with plagiocephaly,

so

> call the university hospital in Albuquerque), and so on. She has

an

> appointment with a pediatric dentist tomorrow, to get his opinion

on

> the jaw question (interestingly, the dentist has 2 year old

twins).

> I'm still playing phone tag with the university pediatric center.

> ly, though, I thought I had left it too late to do much, so I

> haven't been as persistant as I could have been. Today, though, I

> read an article about DOC-banding success in older children, and

I'm

> thinking it may still work! My next problem is finding a doctor

who

> can help, or who has worked with banding and who agrees that my

> daughter doesn't need it.

>

> So, does anyone here know of a doctor in New Mexico (Santa Fe,

> preferably, Albuquerque okay) who consults on plagiocephaly?

>

> Of course, my next problem would then be my insurance company, but

> first things first....

>

> , mom to and (b. 9/20/2001)

[Guest guest]

> HI & welcome to our group!

> You have most definitely come to the right place for all your

> questions! I am happy you found us, and also happy you heard about

> the DOCband and how it CAN help correct plagio in older infants such

> as yours.

> My daughter is proof the DOCband works even at an older age. Abby

> began her DOCband at age 11.5 mos, she wore one band for 4.5 mos

> total & we were able to achieve 50-60% correction of her severe

> plagio with the DOCband! I truly cannot be any more pleased with

her

> results. You can view Abby's before & after band photos at

> www.plagiocephaly.org/support then " before & after " .

> It is a true shame to hear of yet another pediatrician not taking

> plagio seriously & giving you the it'll round on it's own speech.

> That is unfortuanlately very common among our group members here. I

> hate to hear it.

Yes, the pediatrician claims that the current thinking is less

intervention, more agressive head repositioning. But from what I am

reading, her advice on agressive repositioning is coming too late

(around 6-7 months, when it should be 3-4 months). Also, my

daughter's head molding occured in utero, not primarily from sleeping

on her back, so I'm not convinced that changing her sleeping position

was going to be that effective, anyway.

> But what a terrific friend Robyn is. Does her child have any

> physical problems today as a result of the plagio? Is her child's

> head still misshapen?

Well, his wasn't plagio. He had malformed ocular orbitals (?), that

is his eye sockets were there but the brow ridge was shoved down so

that when he was born you couldn't even see his eyes! He *does* have

eyes, and he can see now (although he appears to be cross-eyed,

aparently from his viewpoint he sees only one image), but as you

might imagine his face and scull are visably not quite in alignment.

He also has accelerated growth and is already taller than his 7 yo

brother and will be taller than his mother the next time he sneezes.

This causes some problems because people think he is older and then

assume his is retarded because he talks and acts like a 4 yo. He's

going to have a challenging life.

> Also, did your daughter ever receive physical therapy for her

> torticollis? That's a shame that wasn't addressed more seriously by

> your ped as well Does her head still tilt one way? Or is it

> pretty much resolved (hopefully!)?

She is receiving pt now, although it wasn't prescribed for

torticollis. She has large-muscle developmental delay--she has week

arm and leg muscles and is still not crawling, or even catching

herself when she tips over from sitting--and the therapist has also

been working on her neck muscles. She won't call it torticollis

because that's not the written diagnosis on the order (but she made

faces and rolled her eyes when she asked if that was the *WHOLE*

diagnosis). has much better range of motion, but does still

tend to sleep with her head turned to the same side.

> I'm not familiar with any New Mexico members, but ya never know.

> Hopefully we have one out there for you to help.

> Good luck with everything.....and NO IT'S NOT TOO LATE!!!

> Please keep us posted & welcme again!

> Debbie Abby's mom 3/1/00 DOCgrad 2/16/01-6/22/01

> MI

Thanks for the good words. I'm glad your daughter has done so well

with her DOC band!

, mom to and (b. 9/20/2001)

[Guest guest]

> Keep us posted, we recently were discussing dental appointments

here,

> so I know a lot of us would be interested to hear what the dentist

> has to say in regards to 's jaw. Good luck to you, and

> again, welcome to the group!

The dentist has never dealt with plagiocephaly, at least that he knows

of. He had never heard of banding as a treatment for head shape, and

didn't think it would affect her jaw placement. He said her jaw was

lining up fine, but then said she would probably need braces when she

was older. Hey, she is barely cutting her first 2 teeth, so if he is

diagnosing braces in the future, it sounds like her jaw is NOT lining

up right. This is what I want to nip in the bud!

OTOH, the other dentists in the area wouldn't even see her until she

was 4 yo, so I have to give this one credit for seeing a gummy baby.

I think he needs as much educating on the subject as the pediatrician

does, though.

, mom to and (b. 9/20/2001)