Family Reaction of poss. plagio

[Guest guest]

My father in law was the worst!! At first he kept saying leave it alone it will round out. Then whenever Noah had on the helmet around him he would say pull that thing off it's got to be uncomfortable. Well then we found out Noah couldn't hear. The plagio had made his eustachian tubes so out of alignment that fluid got trapped in there and couldn't go anywhere. It had hardened on his ear drum. So when this happened everyone saw the severity of it and started taking his band seriously. But up until that point we had almost no support from our family.

Mom to (10/09/97)

and Noah (5/29/00) DOC band grad!

Temple, Ga

[Guest guest]

Every time I go to visit my mom and her husband, he (the husband) goes on and on about how Tommy's head is perfect and he doesn't need to wear the band, take it off, blah, blah, blah. Heartwarming but annoying.

Jill Ramos, Las Vegas, NV

[Guest guest]

Hi Everyone -

We need some advise - yesterday we took Skye and (who is 7) to see

their grandma and aunt (Dales mum and sister) - not one word was asked about

Skye's visit to the Ped. or what the outcome was or if she had been given a

diagnosis. We brought up the subject ourselves and offered to give them

some info on the condition - as in the past we have been accused of not

letting them know things - basically the reaction appeared to us that they

were totally disinterested and they didn't want to know about it.

This really hurts as we feel if it was the other granddaughter with a

problem everyone would be falling over themselves to find out what is going

on. I suggested that I would leave some info on both the cranio and the

plagio for them to look at so they could understand what treatment Skye

could require and what she may need to go through - we were told " no just

wait until you know what the prob is "

Is this a common reaction by family members ? Do people think that just

because her head is flat on one side that we are over-reacting?

Dale and I are at the stage where we feel - why should we tell them anything

at all regarding Skye - please if anyone could give us advise it would be

appreciated - we don't know how to handle this

Sorry for rambling

Regards

nna

Brisbane Australia

_________________________________________________________________

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[Guest guest]

nna,

We went thru the same sort of thing with Dave's mom. She was more

interested in talking about her new car and her job than what her

granddaughter may possibly have to go thru. Basicly we just left it

at that & when the rare occasion came about that she would ask we

discussed it.

You tried to inform them and if they are not interested you shouldn't

feel like you have to bend over backwards to get them to understand.

You are doing what is best for that beautiful little girl and that is

all that matters not what someone else thinks. Good luck and keep us

posted.

April In Mass

Mommy to Bri (helmet since 3/22) and Mandy

> Hi Everyone -

>

> We need some advise - yesterday we took Skye and (who is 7)

to see

> their grandma and aunt (Dales mum and sister) - not one word was

asked about

> Skye's visit to the Ped. or what the outcome was or if she had been

given a

> diagnosis. We brought up the subject ourselves and offered to give

them

> some info on the condition - as in the past we have been accused of

not

> letting them know things - basically the reaction appeared to us

that they

> were totally disinterested and they didn't want to know about it.

> This really hurts as we feel if it was the other granddaughter with

a

> problem everyone would be falling over themselves to find out what

is going

> on. I suggested that I would leave some info on both the cranio

and the

> plagio for them to look at so they could understand what treatment

Skye

> could require and what she may need to go through - we were

told " no just

> wait until you know what the prob is "

> Is this a common reaction by family members ? Do people think that

just

> because her head is flat on one side that we are over-reacting?

> Dale and I are at the stage where we feel - why should we tell them

anything

> at all regarding Skye - please if anyone could give us advise it

would be

> appreciated - we don't know how to handle this

> Sorry for rambling

>

> Regards

> nna

> Brisbane Australia

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp

[Guest guest]

Hi nna

We are approximately 2 weeks away from being done with the helmet,

and still haven't told half of my family that the twins had/have

plagio. My parents and brothers know, as well as my husbands mom.

We haven't told his brother or my grandparents. My grandparents are

very loving people, but they have this way of looking down on just

about anything that is different. Whenever we would go and see them,

which is quite often, the helmets get left behind. Otherwise,

quoting my hubby here, 'they would be treated like a freak show!'

And we haven't told his brother, well because he's just an idiot!

So, as frustrating as it is, we all have family members that we love

dearly but feel like slapping them upside the head! All that matters

is you and your husband know that you are doing what is right for

your family.

Niki

Kaylie (still a super STAR) & Danny (STARband grad)

Phila., PA

> Hi Everyone -

>

> We need some advise - yesterday we took Skye and (who is 7)

to see

> their grandma and aunt (Dales mum and sister) - not one word was

asked about

> Skye's visit to the Ped. or what the outcome was or if she had been

given a

> diagnosis. We brought up the subject ourselves and offered to give

them

> some info on the condition - as in the past we have been accused of

not

> letting them know things - basically the reaction appeared to us

that they

> were totally disinterested and they didn't want to know about it.

> This really hurts as we feel if it was the other granddaughter with

a

> problem everyone would be falling over themselves to find out what

is going

> on. I suggested that I would leave some info on both the cranio

and the

> plagio for them to look at so they could understand what treatment

Skye

> could require and what she may need to go through - we were

told " no just

> wait until you know what the prob is "

> Is this a common reaction by family members ? Do people think that

just

> because her head is flat on one side that we are over-reacting?

> Dale and I are at the stage where we feel - why should we tell them

anything

> at all regarding Skye - please if anyone could give us advise it

would be

> appreciated - we don't know how to handle this

> Sorry for rambling

>

> Regards

> nna

> Brisbane Australia

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp

[Guest guest]

Yes, Yes, Yes!!!

In the past, I've drove myself crazy over family's lack of concern

and support for our medical issues (infertility, skin cancer, preterm

labor...). And it's so not worth it to waste your energy worrying

about it. I think you've done all you can to include your family on

the progress and situation.

I'm finding a similar situation with 's tort/plagio. My in-laws

would rather talk about the weather (so typical of them) and my

mother is worried about what people will think if has to wear a

helmet. Like everyone said before me, put your time and energy into

you precious daughter and forget about your family's less than ideal

reaction.

O.

Minnesota

[Guest guest]

nna,

I've got one better than that, my dear husband thought her head

was ok and I was being picky and she would grow straight and it would

do it on its own. Lucking I'm a go getter and we did treatment with

the helmet anyway. My parents thought her head wasent that bad either

and when her hair grew it wouldent show. My pead was the only sane

person with advise for me.

I had to overcome their feeling of been seen in public with a

kid with a helmet on.**** them all. If your childs needs a helmet its

bad enough dealing with your own feeling, you need support not

aggrivation.

I'm so gald I did it and honestly she was very cute wearing it

and after the first day nobody complained to me again. My only regret

is I waited because of them to see if it would round on its own (it

got worse). We would have had more correction if weve had started

treatment earlier.

Lorraine. Fl.Mackenzie's mom. 27 mths.

> Hi Everyone -

>

> We need some advise - yesterday we took Skye and (who is 7)

to see

> their grandma and aunt (Dales mum and sister) - not one word was

asked about

> Skye's visit to the Ped. or what the outcome was or if she had been

given a

> diagnosis. We brought up the subject ourselves and offered to give

them

> some info on the condition - as in the past we have been accused of

not

> letting them know things - basically the reaction appeared to us

that they

> were totally disinterested and they didn't want to know about it.

> This really hurts as we feel if it was the other granddaughter with

a

> problem everyone would be falling over themselves to find out what

is going

> on. I suggested that I would leave some info on both the cranio

and the

> plagio for them to look at so they could understand what treatment

Skye

> could require and what she may need to go through - we were

told " no just

> wait until you know what the prob is "

> Is this a common reaction by family members ? Do people think that

just

> because her head is flat on one side that we are over-reacting?

> Dale and I are at the stage where we feel - why should we tell them

anything

> at all regarding Skye - please if anyone could give us advise it

would be

> appreciated - we don't know how to handle this

> Sorry for rambling

>

> Regards

> nna

> Brisbane Australia

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp

[Guest guest]

nna,

I know what you mean, except I am dealing with the exact opposite.

Almost too much concern! Long before we ever got my son

checked out for plagio, and before I even knew plagio existed, my

grandfather and his wife were constantly at me about how I need to

turn every couple minutes when he is sleeping. I thought it

was so ridiculous an idea. I mean, I understand repositioning, but I

am not about to treat him like a piece of chicken I'm cooking and

turn him every few minutes. I was like, " Okay, do you want to come

to my house and deal with it then? "

And then my other grandparents are always saying, " When does he get

his helmet? " And they do not understand repositioning at all! So I

empathize with you, but just in the opposite way! However my

husband's side of the family couldn't give two rips either!

Kellie

> Hi Everyone -

>

> We need some advise - yesterday we took Skye and (who is 7)

to see

> their grandma and aunt (Dales mum and sister) - not one word was

asked about

> Skye's visit to the Ped. or what the outcome was or if she had been

given a

> diagnosis. We brought up the subject ourselves and offered to give

them

> some info on the condition - as in the past we have been accused of

not

> letting them know things - basically the reaction appeared to us

that they

> were totally disinterested and they didn't want to know about it.

> This really hurts as we feel if it was the other granddaughter with

a

> problem everyone would be falling over themselves to find out what

is going

> on. I suggested that I would leave some info on both the cranio

and the

> plagio for them to look at so they could understand what treatment

Skye

> could require and what she may need to go through - we were

told " no just

> wait until you know what the prob is "

> Is this a common reaction by family members ? Do people think that

just

> because her head is flat on one side that we are over-reacting?

> Dale and I are at the stage where we feel - why should we tell them

anything

> at all regarding Skye - please if anyone could give us advise it

would be

> appreciated - we don't know how to handle this

> Sorry for rambling

>

> Regards

> nna

> Brisbane Australia

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp

[Guest guest]

From my experience with my son...it was definately like no one ever

took me seriously. NO ONE wanted to talk about it and I think they

secretly thought I was nuts! Even when Max was in his helmet people

thoughrt I was over reacting and when I persued the matter they

thought I was obsessed. Finally after my son was diagnosed with

Cranio....they actually started to pay attention....pretty sad huh?

I would say, be patient and after you have a diagnosis they will

start to come around.

In the mean time...you have this group for support. Stay strong!

Amy(Max's mom)

> Hi Everyone -

>

> We need some advise - yesterday we took Skye and (who is 7)

to see

> their grandma and aunt (Dales mum and sister) - not one word was

asked about

> Skye's visit to the Ped. or what the outcome was or if she had been

given a

> diagnosis. We brought up the subject ourselves and offered to give

them

> some info on the condition - as in the past we have been accused of

not

> letting them know things - basically the reaction appeared to us

that they

> were totally disinterested and they didn't want to know about it.

> This really hurts as we feel if it was the other granddaughter with

a

> problem everyone would be falling over themselves to find out what

is going

> on. I suggested that I would leave some info on both the cranio

and the

> plagio for them to look at so they could understand what treatment

Skye

> could require and what she may need to go through - we were

told " no just

> wait until you know what the prob is "

> Is this a common reaction by family members ? Do people think that

just

> because her head is flat on one side that we are over-reacting?

> Dale and I are at the stage where we feel - why should we tell them

anything

> at all regarding Skye - please if anyone could give us advise it

would be

> appreciated - we don't know how to handle this

> Sorry for rambling

>

> Regards

> nna

> Brisbane Australia

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp

[Guest guest]

Niki,

Wish I would have followed your lead in selectively telling certain family members about the helmet (DOC band). Although my mom and dad were skeptical at first and made it seem like I was overreacting ("your mother's head feels like a potato field!), they have become very supportive throughout the wearing of it. However, my mom has spread the news like wildfire through the relative circuit, and now I can't help but feel that he is "different" from everyone...if she hadn't said anything, no one would have had a clue!...although, my tough side says, oh well, this will create awareness as even my cousin's child has to get specially made bike helmets as her head shape has been described as having a shelf in the back. Anyway, I can totally relate!

' Mom