Re: ..

April 13, 2000

I guess I lied. I decided to just bawl by the computer.

Thank you Belinda and Diane for your empathy.

Diane, Grace's head is way off the charts. She measures 19". My head is 21". I've been told she has benign macrocrania which really isn't any big deal. "Its just means she has a big head." Except she's crossing percentiles. The numbers just keep climbing higher over the chart while her length stays in the 90th percentile. It's not something she's going to grow into, supposedly. Neurologically she's sound. There continue to be questions about her hearing, but that is probably more behavioural than anything.

My sister has 2 children. She and I get along famously and I would trust her to the ends of the earth. The worst she's ever done to me is call me "Bucky." Then I got braces and took that little toy away from her She absolutely ADORES Grace. And Grace, her. She would never have made that observation if she didn't truly believe it. And the girl I work with is not the type to say anything hurtful. I purposefully told her to speak freely to me. To not "spare my feelings." I believe she made an honest observation.

If this is the way Grace is meant to be. I can live with that. And I believe I can raise her in such a way that SHE can live with that. But, there is that niggling fear that her doctors and therapists and I are missing something. Something important that will effect her health. THAT'S my worry.

C./subscribe/Plagiocephaly

----- Original Message -----

From: Diane!!!

Plagiocephalyegroups

Sent: Wednesday, April 12, 2000 11:26 PM

Subject: Re: ..

Also, you have one pic of your angels on that ugly gold couch and you say howyou think grace's head looks big there. I didn't see it. just thought youmight want to know that! we know someone with a kid that has no torticollisor plagiocephaly that has a huge head that is literally off the charts inmeasurement and has all kinds of tests done, and he is normal in every way.so really, does your sister have kids? maybe she's envious of grace's beauty?she is a beauty angela. no offense to your sister of course, but sometimespeople can just be bitchy or ignorant. My best friend has 3 kids. 2 of themhave little round heads and the others is big and square like frankenstein.She grew into it. It was normal for her! I hope this is helping a little?diane"Diane!!!" wrote:> Oh dear, I kinda know what you mean. I just found out that my bestfriend> can tell my twins apart by andy's left eye and how his face looks...> great. my husband's best friend can tell by the size of andy's> head...wonderful. , I've seen pics of Grace, and there is> nothing wrong with her. I look at all the pics of the babies on file and> they all look pretty darn normal to me compared to how I see andy's> face. I think we exaggerate our own baby's problems and so are your> relatives. as for the strangers staring, are you sure it's not because> she's cute??? people do doubletakes with us and I always assumed it was> because we have two. now I am wondering... I mean the opthamololgist> thought we should go to geneticists because andy might have that> microfacial thing. How demoralizing. I'm with ya, diane>> " C." wrote:>> > Ok, I'm warning you, I'm stressed. You might just want to skip this> > post. In these past 3 days or so that Grace has been unable to wear> > her band, I've noticed something. At first I forgot and thought it> > was because she had it on. But, she didn't.> > People still stare.> > And not the kind of stare that you would give an adorable smiling> > baby. It's the double-take, questioning look when they don't quite> > understand what they are seeing. And she's NOT WEARING THE BAND! This> > bothered me so much, I asked my sister if she would tell me if Grace> > looked odd. She said, "Yes. She looks a little like she has Down> > Syndrome. Her face is flat and her head is big and tall". Ok. So, I> > thought I would get another opinion. After all, my whole family has> > been dissecting the evenness and flatness and symmetry of Grace's> > skull - they're all probably seeing zebra's where it's just a horse. I> > asked a girl I work with. She's a mom of 2 little girls. She> > wouldn't say anything to purposely hurt my feelings. She also agreed> > there was something different in Grace's looks. Her head looks very> > big and "different." I know Grace has a big head. The doctor's have> > even given me a name for it. But, it's not supposed to be something> > anyone would really notice! That's what the doctor said! I know> > Grace doesn't have Downs and I know she has all her ducks in a row> > mentally. I'm not distressed because I might have a daughter who looks> > different. That doesn't matter in the grand scheme of things. I'm> > terrified because I might have a daughter with something really wrong> > with her! I thought I knew what was going on! I thought we had all> > the names and diagnosis codes and the projected course of treatments.> > All I'm doing is whipping myself into a frenzy here. I'm just going> > to hit the hay and bawl for a little bit. Poor Grace! We go to CT> > Friday to try and get the band adjusted so she can wear it. Once she> > is able to have that on and the "treatment" starts again, I'll feel> > better. I am so sorry I've dumped on you guys. This has been eating> > at me all day. Most of the day I've sniffled and snuffled at my desk.> > Maybe I ate something bad too C.> > /subscribe/Plagiocephaly> > -----------------------------------------------------------------------> >> > -----------------------------------------------------------------------> >

April 13, 2000

Also, you have one pic of your angels on that ugly gold couch and you say how

you think grace's head looks big there. I didn't see it. just thought you

might want to know that! we know someone with a kid that has no torticollis

or plagiocephaly that has a huge head that is literally off the charts in

measurement and has all kinds of tests done, and he is normal in every way.

so really, does your sister have kids? maybe she's envious of grace's beauty?

she is a beauty angela. no offense to your sister of course, but sometimes

people can just be bitchy or ignorant. My best friend has 3 kids. 2 of them

have little round heads and the others is big and square like frankenstein.

She grew into it. It was normal for her! I hope this is helping a little?

diane

" Diane!!! " wrote:

> Oh dear, I kinda know what you mean. I just found out that my bestfriend

> can tell my twins apart by andy's left eye and how his face looks...

> great. my husband's best friend can tell by the size of andy's

> head...wonderful. , I've seen pics of Grace, and there is

> nothing wrong with her. I look at all the pics of the babies on file and

> they all look pretty darn normal to me compared to how I see andy's

> face. I think we exaggerate our own baby's problems and so are your

> relatives. as for the strangers staring, are you sure it's not because

> she's cute??? people do doubletakes with us and I always assumed it was

> because we have two. now I am wondering... I mean the opthamololgist

> thought we should go to geneticists because andy might have that

> microfacial thing. How demoralizing. I'm with ya, diane

>

> " C. " wrote:

>

> > Ok, I'm warning you, I'm stressed. You might just want to skip this

> > post. In these past 3 days or so that Grace has been unable to wear

> > her band, I've noticed something. At first I forgot and thought it

> > was because she had it on. But, she didn't.

> > People still stare.

> > And not the kind of stare that you would give an adorable smiling

> > baby. It's the double-take, questioning look when they don't quite

> > understand what they are seeing. And she's NOT WEARING THE BAND! This

> > bothered me so much, I asked my sister if she would tell me if Grace

> > looked odd. She said, " Yes. She looks a little like she has Down

> > Syndrome. Her face is flat and her head is big and tall " . Ok. So, I

> > thought I would get another opinion. After all, my whole family has

> > been dissecting the evenness and flatness and symmetry of Grace's

> > skull - they're all probably seeing zebra's where it's just a horse. I

> > asked a girl I work with. She's a mom of 2 little girls. She

> > wouldn't say anything to purposely hurt my feelings. She also agreed

> > there was something different in Grace's looks. Her head looks very

> > big and " different. " I know Grace has a big head. The doctor's have

> > even given me a name for it. But, it's not supposed to be something

> > anyone would really notice! That's what the doctor said! I know

> > Grace doesn't have Downs and I know she has all her ducks in a row

> > mentally. I'm not distressed because I might have a daughter who looks

> > different. That doesn't matter in the grand scheme of things. I'm

> > terrified because I might have a daughter with something really wrong

> > with her! I thought I knew what was going on! I thought we had all

> > the names and diagnosis codes and the projected course of treatments.

> > All I'm doing is whipping myself into a frenzy here. I'm just going

> > to hit the hay and bawl for a little bit. Poor Grace! We go to CT

> > Friday to try and get the band adjusted so she can wear it. Once she

> > is able to have that on and the " treatment " starts again, I'll feel

> > better. I am so sorry I've dumped on you guys. This has been eating

> > at me all day. Most of the day I've sniffled and snuffled at my desk.

> > Maybe I ate something bad too C.

> > /subscribe/Plagiocephaly

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

> >

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

> >

April 13, 2000

You are very lucky to have such a good sisterly relationship! I have

such a friendship with my best friend.. Yes, grace sounds just exactly

like my friends son, whose head was the size of his mother's at 10

months of age, so he probably had an even bigger head than grace! and

his body did catch up... I will always have that fear that something is

being missed after being " burned " by so many doctors. diane

" C. " wrote:

> I guess I lied. I decided to just bawl by the computer. Thank you

> Belinda and Diane for your empathy. Diane, Grace's head is way off

> the charts. She measures 19 " . My head is 21 " . I've been told she

> has benign macrocrania which really isn't any big deal. " Its just

> means she has a big head. " Except she's crossing percentiles. The

> numbers just keep climbing higher over the chart while her length

> stays in the 90th percentile. It's not something she's going to grow

> into, supposedly. Neurologically she's sound. There continue to be

> questions about her hearing, but that is probably more behavioural

> than anything. My sister has 2 children. She and I get along famously

> and I would trust her to the ends of the earth. The worst she's ever

> done to me is call me " Bucky. " Then I got braces and took that little

> toy away from her She absolutely ADORES Grace. And Grace, her.

> She would never have made that observation if she didn't truly believe

> it. And the girl I work with is not the type to say anything

> hurtful. I purposefully told her to speak freely to me. To not

> " spare my feelings. " I believe she made an honest observation. If

> this is the way Grace is meant to be. I can live with that. And I

> believe I can raise her in such a way that SHE can live with that.

> But, there is that niggling fear that her doctors and therapists and I

> are missing something. Something important that will effect her

> health. THAT'S my worry. C.

> /subscribe/Plagiocephaly

>

> ----- Original Message -----

> From: Diane!!!

> Plagiocephalyegroups

> Sent: Wednesday, April 12, 2000 11:26 PM

> Subject: Re: ..

> Also, you have one pic of your angels on that ugly gold

> couch and you say how

> you think grace's head looks big there. I didn't see it.

> just thought you

> might want to know that! we know someone with a kid that has

> no torticollis

> or plagiocephaly that has a huge head that is literally off

> the charts in

> measurement and has all kinds of tests done, and he is

> normal in every way.

> so really, does your sister have kids? maybe she's envious

> of grace's beauty?

> she is a beauty angela. no offense to your sister of

> course, but sometimes

> people can just be bitchy or ignorant. My best friend has 3

> kids. 2 of them

> have little round heads and the others is big and square

> like frankenstein.

> She grew into it. It was normal for her! I hope this is

> helping a little?

> diane

>

> " Diane!!! " wrote:

>

> > Oh dear, I kinda know what you mean. I just found out that

> my bestfriend

> > can tell my twins apart by andy's left eye and how his

> face looks...

> > great. my husband's best friend can tell by the size of

> andy's

> > head...wonderful. , I've seen pics of Grace, and

> there is

> > nothing wrong with her. I look at all the pics of the

> babies on file and

> > they all look pretty darn normal to me compared to how I

> see andy's

> > face. I think we exaggerate our own baby's problems and so

> are your

> > relatives. as for the strangers staring, are you sure it's

> not because

> > she's cute??? people do doubletakes with us and I always

> assumed it was

> > because we have two. now I am wondering... I mean the

> opthamololgist

> > thought we should go to geneticists because andy might

> have that

> > microfacial thing. How demoralizing. I'm with ya, diane

> >

> > " C. " wrote:

> >

> > > Ok, I'm warning you, I'm stressed. You might just want

> to skip this

> > > post. In these past 3 days or so that Grace has been

> unable to wear

> > > her band, I've noticed something. At first I forgot and

> thought it

> > > was because she had it on. But, she didn't.

> > > People still stare.

> > > And not the kind of stare that you would give an

> adorable smiling

> > > baby. It's the double-take, questioning look when they

> don't quite

> > > understand what they are seeing. And she's NOT WEARING

> THE BAND! This

> > > bothered me so much, I asked my sister if she would tell

> me if Grace

> > > looked odd. She said, " Yes. She looks a little like

> she has Down

> > > Syndrome. Her face is flat and her head is big and

> tall " . Ok. So, I

> > > thought I would get another opinion. After all, my

> whole family has

> > > been dissecting the evenness and flatness and symmetry

> of Grace's

> > > skull - they're all probably seeing zebra's where it's

> just a horse. I

> > > asked a girl I work with. She's a mom of 2 little

> girls. She

> > > wouldn't say anything to purposely hurt my feelings.

> She also agreed

> > > there was something different in Grace's looks. Her

> head looks very

> > > big and " different. " I know Grace has a big head. The

> doctor's have

> > > even given me a name for it. But, it's not supposed to

> be something

> > > anyone would really notice! That's what the doctor

> said! I know

> > > Grace doesn't have Downs and I know she has all her

> ducks in a row

> > > mentally. I'm not distressed because I might have a

> daughter who looks

> > > different. That doesn't matter in the grand scheme of

> things. I'm

> > > terrified because I might have a daughter with something

> really wrong

> > > with her! I thought I knew what was going on! I

> thought we had all

> > > the names and diagnosis codes and the projected course

> of treatments.

> > > All I'm doing is whipping myself into a frenzy here.

> I'm just going

> > > to hit the hay and bawl for a little bit. Poor Grace!

> We go to CT

> > > Friday to try and get the band adjusted so she can wear

> it. Once she

> > > is able to have that on and the " treatment " starts

> again, I'll feel

> > > better. I am so sorry I've dumped on you guys. This has

> been eating

> > > at me all day. Most of the day I've sniffled and

> snuffled at my desk.

> > > Maybe I ate something bad too C.

> > > /subscribe/Plagiocephaly

> > >

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

>

> > >

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

>

> > >

April 14, 2000

I have seen three babies over the years ( all friends of ours' babies).

Their heads all looked enormously large and one even quite odd shaped. I

will say I saw them all years later and they all looked great.

Judy

April 15, 2000

Thanks, Judy. I've really got to let that worry go. It's hindering. If I stay too focused on it, I miss out on the other GOOD stuff about Grace.

C./subscribe/Plagiocephaly

----- Original Message -----

From: rmissirian@...

Plagiocephalyegroups

Sent: Friday, April 14, 2000 9:51 PM

Subject: Re: ..

I have seen three babies over the years ( all friends of ours' babies). Their heads all looked enormously large and one even quite odd shaped. I will say I saw them all years later and they all looked great.Judy

April 16, 2000

In a message dated 4/12/00 7:30:08 PM Pacific Daylight Time,

diane@... writes:

<< big and square like frankenstein. >>

Abby's head still looks wide, even after the band. I kept obsessing about it

after she stopped wearing her band. I laughed about the frankenstein comment!

Now I am use to it. I still catch myself looking at little babies and being

envious at the full roundness of their heads. I feel so crappy, my babies

can see, hear, walk, and I get jealous over head shape. I am with ya

sister, it feels crappy to worry & worry. I am still trying to remind myself

how fortunate we are that our babies are so wonderful & that we are lucky to

have an opportunity to help fix their noggins. I am tired, it feels like

there is always a battle to fight on behalf of our children (we are going

thru some stuff w/our 3 year old & I am tired of being dismissed and being

told " she is only 3! " ) Best wished to all...I am going to go kisses my

sleeping little one and count my blessing (by the way...did I mention our 5

year thinks she has to barf? I tell ya, if it's not one thing it's another).

Oh ya, I have to go count my blessings !

Kimry

April 16, 2000

In a message dated 4/12/00 7:49:35 PM Pacific Daylight Time, crain@...

writes:

<< If this is the way Grace is meant to be. I can live with that. And I

believe I can raise her in such a way that SHE can live with that. >>

When I look at my kids & what current challenges they face, and what may lay

ahead for them in the future I trust that God gave them to us because we are

able to help them & lead them to be who they are meant to be. To get them

over the obstacles and that we can handle it. I know it sounds mushy, but I

get a great comfort in thinking that perhaps we were chosen to care for these

little ones because we as parents have the mental smarts to get them the

needed support & the compassion to ease the anguish in their hearts. Big Hug

to you , you are a great Mom, and what a blessing you are to Gage &

Grace. Also to us! Thank you again, Kimry

April 16, 2000

This makes me sick, sick, sick. I am so mad at the AAP, SIDS Alliance, and

Dept. of Health and Human Services for not telling the truth in their

brochure. I am also mad at Lucile Salter Packard Children's Hospital for not

giving me a warning in their newborn nursery instructions. These people

don't care about my baby. I feel like I am the only one who cares about him.

He was seen by seven - count them - seven health care professionals from the

time he was born until he was diagnosed as a flat head at two months of age.

A O.B., a hired midwife/doula, a hospital delivery nurse, two pediatric

specialist who gave him an APGAR exam, a pediatrician who examined him before

he could be released from the hospital, and his regular pediatrician who

examined him at two weeks and also at one month. Not one of them mentioned

proper sleeping position and how to ward off plagio. I am very angry with

these people. I trusted them and their stupid recommendation. Now my little

Bobby will never be the way God intended. My husband keeps telling me to

give it up. But I feel Bobby is owed something for this lie - he has

suffered through physical therapy for several months and now his head will

never be what he was born with. I will never in my lifetime be able to

forgive them for what they have put Bobby, me and my family through.

Judy

April 16, 2000

Oh Kimry!!!!

1, 2, 3, 4,................

Count as high as you can!!!!

Kendra

AAKARA@... wrote:

In a message dated 4/12/00 7:30:08 PM Pacific

Daylight Time,

diane@... writes:

<< big and square like frankenstein. >>

Abby's head still looks wide, even after the band. I kept obsessing

about it

after she stopped wearing her band. I laughed about the frankenstein

comment!

Now I am use to it. I still catch myself looking at little

babies and being

envious at the full roundness of their heads. I feel so crappy,

my babies

can see, hear, walk, and I get jealous over head shape.

I am with ya

sister, it feels crappy to worry & worry. I am still

trying to remind myself

how fortunate we are that our babies are so wonderful & that

we are lucky to

have an opportunity to help fix their noggins. I am tired,

it feels like

there is always a battle to fight on behalf of our children (we

are going

thru some stuff w/our 3 year old & I am tired of being dismissed

and being

told "she is only 3!") Best wished to all...I am going to

go kisses my

sleeping little one and count my blessing (by the way...did I mention

our 5

year thinks she has to barf? I tell ya, if it's not one thing

it's another).

Oh ya, I have to go count my blessings !

Kimry

April 16, 2000

Hey Kimry!

I was just reading tonight of how kids with positional plagiocephaly still "exhibit a wider, shorter head shape then their age-matched normals" even after the DOC band therapy was completed. It said this was "a condition that is consistent with the recognized positional etiologies of plagiocephaly." It also said infants with plagio tend to keep a more brachycephalic configuration after treatment is ended. Interesting isn't it.

If you look at the pictures of all our beautiful kids, you DO see some similar characteristics. Wide foreheads, broad faces, and full cheeks.

By the way, the paper I'm referring to is the one written by , Tim Littlefield, Jeanne Pomatto, Kim Manwaring, and Beals. It's titled "Cranial Growth Unrestricted During Treatment of Deformational Plagiocephaly". There is a link to it at Plagiocephaly.org.

But, anyway. Oh Kimry, kiss your kids and throw a bucket by the 5 year olds bed! If I can ever find info or something to help with your dilemma with your 3 year old, please let me know!

C./subscribe/Plagiocephaly

----- Original Message -----

From: AAKARA@...

Plagiocephalyegroups

Sent: Saturday, April 15, 2000 11:35 PM

Subject: Re: ..

In a message dated 4/12/00 7:30:08 PM Pacific Daylight Time, diane@... writes:<< big and square like frankenstein. >>Abby's head still looks wide, even after the band. I kept obsessing about it after she stopped wearing her band. I laughed about the frankenstein comment! Now I am use to it. I still catch myself looking at little babies and being envious at the full roundness of their heads. I feel so crappy, my babies can see, hear, walk, and I get jealous over head shape. I am with ya sister, it feels crappy to worry & worry. I am still trying to remind myself how fortunate we are that our babies are so wonderful & that we are lucky to have an opportunity to help fix their noggins. I am tired, it feels like there is always a battle to fight on behalf of our children (we are going thru some stuff w/our 3 year old & I am tired of being dismissed and being told "she is only 3!") Best wished to all...I am going to go kisses my sleeping little one and count my blessing (by the way...did I mention our 5 year thinks she has to barf? I tell ya, if it's not one thing it's another). Oh ya, I have to go count my blessings !Kimry

April 16, 2000

Gosh Kimry, I don't know what to say. Thank you.

I've often thought Grace and Gage were given to me to teach me patience and humility. Something I've always been very lacking in. So, I think they are doing more for me than I could ever do for them!

C./subscribe/Plagiocephaly

----- Original Message -----

From: AAKARA@...

Plagiocephalyegroups

Sent: Saturday, April 15, 2000 11:41 PM

Subject: Re: ..

In a message dated 4/12/00 7:49:35 PM Pacific Daylight Time, crain@... writes:<< If this is the way Grace is meant to be. I can live with that. And I believe I can raise her in such a way that SHE can live with that. >>When I look at my kids & what current challenges they face, and what may lay ahead for them in the future I trust that God gave them to us because we are able to help them & lead them to be who they are meant to be. To get them over the obstacles and that we can handle it. I know it sounds mushy, but I get a great comfort in thinking that perhaps we were chosen to care for these little ones because we as parents have the mental smarts to get them the needed support & the compassion to ease the anguish in their hearts. Big Hug to you , you are a great Mom, and what a blessing you are to Gage & Grace. Also to us! Thank you again, Kimry

April 16, 2000

Judy-

Funnel that anger into something proactive! You're doing great by writing letters to organizations, but I'm worried about you. Please don't get so eaten up by rage you end up feeling bitter all the time and miss out on these wonderful months with Bobby. You are going to give yourself an ulcer!

Don't misunderstand me, I totally understand your anger! You are correct in your thinking that people need to be informed. And it's wonderful you're doing something about it. I'm proud of you! But, don't make yourself sick!

C./subscribe/Plagiocephaly

----- Original Message -----

From: rmissirian@...

Plagiocephalyegroups

Sent: Sunday, April 16, 2000 2:09 AM

Subject: Re: ..

This makes me sick, sick, sick. I am so mad at the AAP, SIDS Alliance, and Dept. of Health and Human Services for not telling the truth in their brochure. I am also mad at Lucile Salter Packard Children's Hospital for not giving me a warning in their newborn nursery instructions. These people don't care about my baby. I feel like I am the only one who cares about him. He was seen by seven - count them - seven health care professionals from the time he was born until he was diagnosed as a flat head at two months of age. A O.B., a hired midwife/doula, a hospital delivery nurse, two pediatric specialist who gave him an APGAR exam, a pediatrician who examined him before he could be released from the hospital, and his regular pediatrician who examined him at two weeks and also at one month. Not one of them mentioned proper sleeping position and how to ward off plagio. I am very angry with these people. I trusted them and their stupid recommendation. Now my little Bobby will never be the way God intended. My husband keeps telling me to give it up. But I feel Bobby is owed something for this lie - he has suffered through physical therapy for several months and now his head will never be what he was born with. I will never in my lifetime be able to forgive them for what they have put Bobby, me and my family through.Judy

April 16, 2000

I agree with , Judy.

" C." wrote:

Judy- Funnel

that anger into something proactive! You're doing great by writing

letters to organizations, but I'm worried about you. Please don't

get so eaten up by rage you end up feeling bitter all the time and miss

out on these wonderful months with Bobby. You are going to give yourself

an ulcer! Don't misunderstand

me, I totally understand your anger! You are correct in your thinking

that people need to be informed. And it's wonderful you're doing

something about it. I'm proud of you! But, don't make yourself

sick! C.

/subscribe/Plagiocephaly

----- Original Message -----

From:

rmissirian@...

Plagiocephalyegroups

Sent: Sunday, April 16, 2000 2:09

AM

Subject: Re: ..

This makes me sick, sick, sick. I am so mad at the AAP, SIDS

Alliance, and

Dept. of Health and Human Services for not telling the truth in

their

brochure. I am also mad at Lucile Salter Packard Children's

Hospital for not

giving me a warning in their newborn nursery instructions.

These people

don't care about my baby. I feel like I am the only one who

cares about him.

He was seen by seven - count them - seven health care professionals

from the

time he was born until he was diagnosed as a flat head at two months

of age.

A O.B., a hired midwife/doula, a hospital delivery nurse, two pediatric

specialist who gave him an APGAR exam, a pediatrician who examined

him before

he could be released from the hospital, and his regular pediatrician

who

examined him at two weeks and also at one month. Not one

of them mentioned

proper sleeping position and how to ward off plagio. I am

very angry with

these people. I trusted them and their stupid recommendation.

Now my little

Bobby will never be the way God intended. My husband keeps

telling me to

give it up. But I feel Bobby is owed something for this lie

- he has

suffered through physical therapy for several months and now his

head will

never be what he was born with. I will never in my lifetime

be able to

forgive them for what they have put Bobby, me and my family through.

Judy

April 16, 2000

Judy....I agree with you that all these professionals ourkids encountered at

birth or shortly after should have mentioned something!!!!!! Each day I also

worry and think how easily this could have all been prevented. I must stop

and think, somewhere, there is always some poor child who is worse off than

any of ours. Hard to believe but true. For instance, in my own family, my

cousins little baby, not even a month old has had her first of many heart

surgeries. They had to repair and insert a shunt in an artery. She will need

more surgery at 6 months. I cannot even imagine what it would feel like to

look at her with a big scar on her chest. That's permanent, the

helmet/band/PT is not!! Belinda (Indiana)

April 19, 2000

Thanks

I won't make myself sick. I just can't ever think of Bobby's condition

without knowing it was preventable. The hospital knowingly recommended this

position without warning and I will never be able to forgive them. I keep

asking myself " how can they do this to innocent babies? " I have no answer

except that they selfishly wanted a quick fix to the SIDS issue without

regard to other suffering.

Judy

April 19, 2000

I agree that many children are worse off. How sad. I especially think about

the little children who have severe head deformation and aren't getting any

treatment. How will they turn out?

Judy

April 19, 2000

Judy,

I can understand your position because I brought up Maddie's flat spot and

tendency to turn to the right at about 2 months and was casually told not to

worry and to try repositioning her. We did this but not aggressively because

at the time I didn't even know what plagiocephaly was. I had a feeling that

something wasn't right but my ped never seemed worried, so why should I,

right? If I knew at two months, what I know now at almost 5, we might not be

getting her fitted for the DOC Band. And, maybe we would be, but I sure wish

I had had a chance to correct it with aggressive repositioning first. By the

way, Maddie is going in on Tuesday for her molding. We are going ahead with

this before receiving word from our insurance company. We just don't want to

let any more time slip away while the insurance company is deciding whether

or not this is medically necessary.

Take Care Judy,

in Tucson

April 19, 2000

, that's exactly what happened to us too! If we'd started aggressively repositioning our son at 2 months the way we did at 4 months, I'm sure his head would be way better. It's gone from moderate to mild with repositioning (he's almost 7 months now) but we're getting the helmet in the next couple of weeks as the rounding out seems to have stopped. You're doing the right thing by not waiting. -Pam

----- Original Message -----

From: Sar617mc@...

Plagiocephalyegroups

Sent: Wednesday, April 19, 2000 9:34 AM

Subject: Re: ..

Judy,I can understand your position because I brought up Maddie's flat spot and tendency to turn to the right at about 2 months and was casually told not to worry and to try repositioning her. We did this but not aggressively because at the time I didn't even know what plagiocephaly was. I had a feeling that something wasn't right but my ped never seemed worried, so why should I, right? If I knew at two months, what I know now at almost 5, we might not be getting her fitted for the DOC Band. And, maybe we would be, but I sure wish I had had a chance to correct it with aggressive repositioning first. By the way, Maddie is going in on Tuesday for her molding. We are going ahead with this before receiving word from our insurance company. We just don't want to let any more time slip away while the insurance company is deciding whether or not this is medically necessary.Take Care Judy, in Tucson

April 19, 2000

Thanks .

Bobby is 10 months next week. The neurologist wants us to wait 3 more months

before prescribing the band for him. We were diagnosed at 2 months old. It

has taken months to " get educated " and the road has been long and hard. I am

enjoying Bobby but this has taken away some of the joy.

Judy

April 19, 2000

Hello,

I don't know if this will help anyone at all, but our pediatrician recommended we reposition my son at 2 months and we did so aggressively for about four months. He did manage to squirm out and get on his back a lot, but I'm sure he spent much more time on his left side. It didn't really help much at all. The helmet seems to be doing much better than repositioning ever did.

----------

From: " Doug & Pam " <hambug@...>

Subject: Re: ..

Date: Wed, Apr 19, 2000, 8:55 AM

, that's exactly what happened to us too! If we'd started aggressively repositioning our son at 2 months the way we did at 4 months, I'm sure his head would be way better. It's gone from moderate to mild with repositioning (he's almost 7 months now) but we're getting the helmet in the next couple of weeks as the rounding out seems to have stopped. You're doing the right thing by not waiting. -Pam

----- Original Message -----

From: Sar617mc@... <mailto:Sar617mc@...>

Plagiocephalyegroups <mailto:Plagiocephalyegroups>