Re: thanks for the nice welcome , here is our story

[Guest guest]

ELizabeth,

Thanks for sharing your story. You are a wonderful mommy, following

those mommy instincts! I had done a ton of research on plagio as

well. I'm sure I know more about it than my ped. She (the ped) had

me go to a neurosurgeon and I wasn't going to leave that office

without a band script and letter of medical neccessity. Luckily, the

neurosurgeon did it for us. Logan will get casted at the NJ CT on

the 7th. I'm sorry that your parents are second guessing you, that's

not what grandparents should do!! YOU know best. I sure hope they

come around. Makes me think about my mom, I told her how important

it was to do tummy time, and she would tell me not to do it when he

started to fuss. Well, he would have never had tummy time if I did

that! And now I am doing PT on Logan for his torticollis and she is

all concerned that I am hurting him. *sigh* I just tell her that I

am the mommy and I know what's best!

ps do you have any pics of Lucas?

-/Logan 5.75 months

PA

> >We would love to hear more about your child and about why you will

be coming to OKC for treatment.

> Thank you so much for the very kind welcome. It is such a relief to

talk to others who have been, or currently are there. I heard about

your list form another mom who I was put in contact with. (it is a

kind of along story, but really great how it worked out) I must

apologize before hand, I got very long winded. Thank you for

listening to our story and our concerns.

>

> I was in on bedrest at 32 weeks and severe problems with preterm

labor. Our

> son was in the same position in utero for 6 weeks and was breech.

Lucas was

> born premature by 4 weeks and was in the NICU for 5 days. He had so

many

> problems at birth, he was one sick little boy. I figured once we

went home

> we were done with " health concerns " . I knew of the risks of SIDS

and was

> adamant that he sleep on his back. I was diligent in making sure we

rotated

> him from end to end so he never slept on the same

> side of his head. I still can not help but feel guilty. I keep on

going over

> those first few months and second guessing myself wondering what

did I

> do/not do to cause this.

>

> I had noticed his head was flat on the back, but didn't think too

much about

> it. I figured it will round out on its own. Well, weekend before

last my

> husband noticed there was a problem and was very concerned. He was

coming up

> with all these scenarios, form hydrocephalus to cancer to brain

tumor. My

> husband does not normally get excited about these kind of things, I

do. He

> was wanting me to take him to the ER. I was having to remain the

calm one

> this time and was refusing to see anything wrong in order to hold it

> together. Although by the time we took him to the Ped. on Monday

afternoon I

> knew something was terribly wrong.

>

> Our Ped was not terribly concerned, took x-rays to rule out cranio.

Once

> x-rays came back and were fine, she wanted us to just wait it out.

(She

> feels the helmet/band therapy is extreme and not necessary). Well,

I had been

> researching on the internet in the 24 hours btwn x-rays taken and

when we

> heard the results. I had spent HOURS on the net and I knew there was

> something so wrong, he had all the classic symptoms of plagio. You

could

> just list them right off. I have tried the repositioning, the only

time he is on his back is too change is diaper.

> Since he doesn't sleep on his back anymore, it is not really a

concern. I do

> not want to see if it will work out on its own, I am not willing to

just

> cover it up with his hair. His ears are really misaligned, wrong

size, etc.

> The complete right side of his head, forehead, cheek, etc are look

to be

> swollen and are 1/4-1/2 inch bigger then the left side. Some people

have

> started noticing on their own that their is a problem and he looks

> " different " . . Our ped told us we could go to St. Louis, but I am

from OKC and my Dad is the former dean of the University of Oklahoma

Medical School.

>

> Well, we basically insisted we would take him to a specialist. I am

from OKC

> and am very familiar with the University of Oklahoma Health

Center/Medical

> School. My father being a physician knows many contacts since he

is on the

> faculty there. My parents don't really support our pursuing this

and our

> very negative. Once they found out I was researching on the

internet they

> hit the roof! They had comments like " you don't know what you are

doing " ,

> " you are not a trained professional, you can not interpret those

results " ,

> " you are just putting ideas in to your head, causing yourself to

worry

> needlessly " . Well, we do not feel that way at all and had decided

that if

> they would not help us, we would take him to where they would. To

make a

> long story short, my Dad did get us a appt with a ped. neurologist

for next

> Tuesday, so it is a starting point. A Dr. Park in case you

are wondering. Does anyone know her?

>

> I know my parents and know they will try and manipulate

> the situation. I know that they do not agree with us and they will

try to

> make it so we do not see the Dr who could help him or make it so we

don't do what we feel is right. I don't know how I will

> make it possible to let the Dr know our wishes, we want him in a

band. We

> are not willing to wait around and miss this window of optimal

correction.

> Lucas will be 6 months on Saturday. We would much rather he wear a

band for

> 6mths to a year and get it

> corrected. We know that kids can be mean and we do not want to

give them

> any extra ammunition.

>

> The cost was of course a huge concern. I stay at home with Lucas

and his

> older brother, Caleb. Needless to say two in diapers is not cheap.

> We are five hours form OKC and staying with my parents will be much

cheaper

> then a hotel. I spoke with an agency here in Missouri who will pay

for

> anything we need that our insurance does not. That is such a

> huge answer to prayer. We did not know where the money would come

from.

>

> I don't know where to go form here. I don't know what to do. I am

just

> dreading next week. I am sure you are probably wondering why we are

even

> asking my parents to help. I am not really sure, except for the

fact that we

> always hope our parents will do what is right. I am so grateful you

to be in your group. Thanks for you your very sweet welcome to the

group, but also thanks for listening to our story. I know I rambled

(a lot ),

> sorry.

>

>

> mom to Lucas 6 mths and Caleb 2

> near Branson MO

[Guest guest]

Hi :

Thank you so much for sharing Lucas's story with all of us. You are

doing everything the right way! I want to pat you on your back for

all the research you've done into getting Lucas help & treatment!

Unfortunately, so many of our group parents have been in similar

situations as yours, with pediatricians telling them plagio is no big

deal, it'll round on it's own, hair will cover it, etc......

I am very sorry to hear of your unsupportive parents. I'm sure

they'll come around in time, I hope so at least! It'll make whatever

decision you come to easier for everyone involved.

The helmets and bands do NOT hurt the child in any way. There is

absolutely NO pain involved with bandhelmet therapy. Perhaps you

could ask your parents if they would've gotten you braces for your

teeth as you were growing up to help straighten out your crooked

teeth? I bet they would have (maybe they even did, did you ever have

braces, or a sibling?)......these helmets are no different, outside

of the fact that teeth braces can be painful, the bands are NOT.!

Maybe that'll help put them at ease with the idea of a band for their

grandson?! It's worth a shot! Helmets help straighten out baby's

crooked little heads!

Best of luck at your appt next week. Try to keep a good attitude.

Check out www.plagiocephaly.org/support then " questions for the Dr "

you can print out the list to take to your appt with you if it will

help.

Hang in there, you're a great mom & don't ever feel guilty about

Lucas's plagio.. Good grief, it sounds like you've been

repositioning him from day one! That's terrific. For some reason

plagio occurs in certain babies, not others.

Debbie Abby's mom DOCGrad

MI

> Thank you so much for the very kind welcome. It is such a relief to

talk to others who have been, or currently are there. I heard about

your list form another mom who I was put in contact with. (it is a

kind of along story, but really great how it worked out) I must

apologize before hand, I got very long winded. Thank you for

listening to our story and our concerns.

>

> I was in on bedrest at 32 weeks and severe problems with preterm

labor. Our

> son was in the same position in utero for 6 weeks and was breech.

Lucas was

> born premature by 4 weeks and was in the NICU for 5 days. He had so

many

> problems at birth, he was one sick little boy. I figured once we

went home

> we were done with " health concerns " . I knew of the risks of SIDS

and was

> adamant that he sleep on his back. I was diligent in making sure we

rotated

> him from end to end so he never slept on the same

> side of his head. I still can not help but feel guilty. I keep on

going over

> those first few months and second guessing myself wondering what

did I

> do/not do to cause this.

>

> I had noticed his head was flat on the back, but didn't think too

much about

> it. I figured it will round out on its own. Well, weekend before

last my

> husband noticed there was a problem and was very concerned. He was

coming up

> with all these scenarios, form hydrocephalus to cancer to brain

tumor. My

> husband does not normally get excited about these kind of things, I

do. He

> was wanting me to take him to the ER. I was having to remain the

calm one

> this time and was refusing to see anything wrong in order to hold it

> together. Although by the time we took him to the Ped. on Monday

afternoon I

> knew something was terribly wrong.

>

> Our Ped was not terribly concerned, took x-rays to rule out cranio.

Once

> x-rays came back and were fine, she wanted us to just wait it out.

(She

> feels the helmet/band therapy is extreme and not necessary). Well,

I had been

> researching on the internet in the 24 hours btwn x-rays taken and

when we

> heard the results. I had spent HOURS on the net and I knew there was

> something so wrong, he had all the classic symptoms of plagio. You

could

> just list them right off. I have tried the repositioning, the only

time he is on his back is too change is diaper.

> Since he doesn't sleep on his back anymore, it is not really a

concern. I do

> not want to see if it will work out on its own, I am not willing to

just

> cover it up with his hair. His ears are really misaligned, wrong

size, etc.

> The complete right side of his head, forehead, cheek, etc are look

to be

> swollen and are 1/4-1/2 inch bigger then the left side. Some people

have

> started noticing on their own that their is a problem and he looks

> " different " . . Our ped told us we could go to St. Louis, but I am

from OKC and my Dad is the former dean of the University of Oklahoma

Medical School.

>

> Well, we basically insisted we would take him to a specialist. I am

from OKC

> and am very familiar with the University of Oklahoma Health

Center/Medical

> School. My father being a physician knows many contacts since he

is on the

> faculty there. My parents don't really support our pursuing this

and our

> very negative. Once they found out I was researching on the

internet they

> hit the roof! They had comments like " you don't know what you are

doing " ,

> " you are not a trained professional, you can not interpret those

results " ,

> " you are just putting ideas in to your head, causing yourself to

worry

> needlessly " . Well, we do not feel that way at all and had decided

that if

> they would not help us, we would take him to where they would. To

make a

> long story short, my Dad did get us a appt with a ped. neurologist

for next

> Tuesday, so it is a starting point. A Dr. Park in case you

are wondering. Does anyone know her?

>

> I know my parents and know they will try and manipulate

> the situation. I know that they do not agree with us and they will

try to

> make it so we do not see the Dr who could help him or make it so we

don't do what we feel is right. I don't know how I will

> make it possible to let the Dr know our wishes, we want him in a

band. We

> are not willing to wait around and miss this window of optimal

correction.

> Lucas will be 6 months on Saturday. We would much rather he wear a

band for

> 6mths to a year and get it

> corrected. We know that kids can be mean and we do not want to

give them

> any extra ammunition.

>

> The cost was of course a huge concern. I stay at home with Lucas

and his

> older brother, Caleb. Needless to say two in diapers is not cheap.

> We are five hours form OKC and staying with my parents will be much

cheaper

> then a hotel. I spoke with an agency here in Missouri who will pay

for

> anything we need that our insurance does not. That is such a

> huge answer to prayer. We did not know where the money would come

from.

>

> I don't know where to go form here. I don't know what to do. I am

just

> dreading next week. I am sure you are probably wondering why we are

even

> asking my parents to help. I am not really sure, except for the

fact that we

> always hope our parents will do what is right. I am so grateful you

to be in your group. Thanks for you your very sweet welcome to the

group, but also thanks for listening to our story. I know I rambled

(a lot ),

> sorry.

>

>

> mom to Lucas 6 mths and Caleb 2

> near Branson MO