Re: Got STARband two days ago for brachy, feeling bad - bit of a rant

[Guest guest]

Sorry you're feeling bad. It does seem hard to believe, but it really will get

better/easier. After a while, the band just becomes part of them and you get so

used to it. At some point, my son started looking " weird " when he DIDN'T have

his band on. Or someone would comment on it and I'd have to stop and remember

that he was even wearing it. It is all-consuming now, but at some point, you

just kind of forget about it. My son wore 2 DOCBands for 8 months (he was way

older though, 17-24 months old) and when he graduated, it was an adjustment back

to NOT wearing it. For the first few days after I kept feeling like I was

forgetting something!

Even if it is 6 months of treatment, he'll have his whole life ahead of him with

a nice round head, so you're doing a really good thing for him. Try to enjoy

this time because it really does go fast. Hang in there!

Jake-3.5 (DOCBand Grad 9/08)

Raleigh, NC

>

> I can't stop feeling like I hate this. It's only been a couple days, so we are

still in the breaking-in period, and I find myself counting down the minutes for

my son's hour break to take his helmet off. I am dreading day 5 when he goes to

23 hours a day. I know it's not that bad, and we will get used to it, and blah

blah blah.

>

> I think what's hard for me is not having a definite end date to look forward

to. I don't like the " 4-6 month range " we were given. I want it to take 4

months, no more. I'm also mad at myself that we didn't do this sooner. I was in

a bit of denial after my son's ped noticed his brachy at his 4 month appt and

referred us to a neurosurgeon, but I kept putting it off, and now he is 6.5

months old and will have to wear it longer than if I would have just listened to

the ped.

>

> I keep hearing how much harder brachy is to treat, that it takes longer, etc.

etc. and I can't help feeling discouraged. I just don't want my kid in a helmet

that long, I'm sorry. Maybe I'm selfish, but I can't imagine having to wear a

helmet 23 hours a day, so what makes us think it doesn't bother our babies? They

just can't do anything about it.

>

> How long were your kids in their helmet? Just wondering. I need a bit of

positive encouragement.

>

[Guest guest]

I know it is difficult. For us too, we do not mind the helmet at all.

It is so much better than the alternative. It is much, much, much

better than having to look at a deformed head for years. We are more

toward the end of our helmet treatment, and we are trying to keep the

helmet on as long as possible to squeeze any last bit of improvement

out of it. So, hang in there and you will be glad you did.

Oh, and I'm sure the helmet as saved from a few major head bangs!

Best,

Kathy, mom to 22.5 months

nwilkens2275 wrote:

Sorry you're feeling bad. It does seem hard to believe, but it

really will get better/easier. After a while, the band just becomes

part of them and you get so used to it. At some point, my son started

looking "weird" when he DIDN'T have his band on. Or someone would

comment on it and I'd have to stop and remember that he was even

wearing it. It is all-consuming now, but at some point, you just kind

of forget about it. My son wore 2 DOCBands for 8 months (he was way

older though, 17-24 months old) and when he graduated, it was an

adjustment back to NOT wearing it. For the first few days after I kept

feeling like I was forgetting something!

Even if it is 6 months of treatment, he'll have his whole life ahead of

him with a nice round head, so you're doing a really good thing for

him. Try to enjoy this time because it really does go fast. Hang in

there!

Jake-3.5 (DOCBand Grad 9/08)

Raleigh, NC

>

> I can't stop feeling like I hate this. It's only been a couple

days, so we are still in the breaking-in period, and I find myself

counting down the minutes for my son's hour break to take his helmet

off. I am dreading day 5 when he goes to 23 hours a day. I know it's

not that bad, and we will get used to it, and blah blah blah.

>

> I think what's hard for me is not having a definite end date to

look forward to. I don't like the "4-6 month range" we were given. I

want it to take 4 months, no more. I'm also mad at myself that we

didn't do this sooner. I was in a bit of denial after my son's ped

noticed his brachy at his 4 month appt and referred us to a

neurosurgeon, but I kept putting it off, and now he is 6.5 months old

and will have to wear it longer than if I would have just listened to

the ped.

>

> I keep hearing how much harder brachy is to treat, that it takes

longer, etc. etc. and I can't help feeling discouraged. I just don't

want my kid in a helmet that long, I'm sorry. Maybe I'm selfish, but I

can't imagine having to wear a helmet 23 hours a day, so what makes us

think it doesn't bother our babies? They just can't do anything about

it.

>

> How long were your kids in their helmet? Just wondering. I need a

bit of positive encouragement.

>

[Guest guest]

My daughter wore her band for 6 months starting at 15 months and I can't tell you how quickly it went. Like , I got so used to it that it was an adjustment to have it off. In fact, if the ortho would have agreed and I had known it was an option, we would have continued longer.

After a while, it becomes no big deal - I promise. Hang in there for now and you will be glad that you did.

, mom to , 2.5 years

STARband grad May 2009 Re: Got STARband two days ago for brachy, feeling bad - bit of a rant

Sorry you're feeling bad. It does seem hard to believe, but it really will get better/easier. After a while, the band just becomes part of them and you get so used to it. At some point, my son started looking "weird" when he DIDN'T have his band on. Or someone would comment on it and I'd have to stop and remember that he was even wearing it. It is all-consuming now, but at some point, you just kind of forget about it. My son wore 2 DOCBands for 8 months (he was way older though, 17-24 months old) and when he graduated, it was an adjustment back to NOT wearing it. For the first few days after I kept feeling like I was forgetting something! Even if it is 6 months of treatment, he'll have his whole life ahead of him with a nice round head, so you're doing a really good thing for him. Try to enjoy this time because it really does go fast. Hang in there!Jake-3.5 (DOCBand Grad 9/08)Raleigh, NC>> I can't stop feeling like I hate this. It's only been a couple days, so we are still in the breaking-in period, and I find myself counting down the minutes for my son's hour break to take his helmet off. I am dreading day 5 when he goes to 23 hours a day. I know it's not that bad, and we will get used to it, and blah blah blah.> > I think what's hard for me is not having a definite end date to look forward to. I don't like the "4-6 month range" we were given. I want it to take 4 months, no more. I'm also mad at myself that we didn't do this sooner. I was in a bit of denial after my son's ped noticed his brachy at his 4 month appt and referred us to a neurosurgeon, but I kept putting it off, and now he is 6.5 months old and will have to wear it longer than if I would have just listened to the ped.> > I keep hearing how much harder brachy is to treat, that it takes longer, etc. etc. and I can't help feeling discouraged. I just don't want my kid in a helmet that long, I'm sorry. Maybe I'm selfish, but I can't imagine having to wear a helmet 23 hours a day, so what makes us think it doesn't bother our babies? They just can't do anything about it.> > How long were your kids in their helmet? Just wondering. I need a bit of positive encouragement.>

[Guest guest]

My daughter also has brachy and began treatment at 5 months. She's now 9 months

and we are nearing the end. I just went to her last appointment on Thursday and

the Ortho said " in his eyes she done " but that if I wanted to keep her in it and

improve her CI then he would support that as well.

So now I am faced with a decision. Do I take it off or leave it on? At this

point she is falling within the " normal range " but is in the high end of normal

so I felt like she should wear it a little longer. I never would have thought I

would make that decision but there were a few factors that played into making

that decision. Besides the obvious, she's at the high end of normal, she

doesn't mind wearing it, she looks cute in it and it protects her from herself

and from her sister.

At first it was hard to adjust to the band, but now it's just part of who she

is. It really is cute and it makes her chubby cheeks even chubbier! She looks

entirely different without the helmet, I suppose I will have to adjust.

I hope you will adjust quickly and see that the bands really are not that bad.

If you think to yourself that this is a horrible experience, it will be. But if

you change your perspective and be positive it can be. There are far worse

things in life to have to deal with, this is really very minute.

mom to Oakley, 9 months

STARband Dec09-Present

> >

> > I can't stop feeling like I hate this. It's only been a couple days, so we

are still in the breaking-in period, and I find myself counting down the minutes

for my son's hour break to take his helmet off. I am dreading day 5 when he goes

to 23 hours a day. I know it's not that bad, and we will get used to it, and

blah blah blah.

> >

> > I think what's hard for me is not having a definite end date to look forward

to. I don't like the " 4-6 month range " we were given. I want it to take 4

months, no more. I'm also mad at myself that we didn't do this sooner. I was in

a bit of denial after my son's ped noticed his brachy at his 4 month appt and

referred us to a neurosurgeon, but I kept putting it off, and now he is 6.5

months old and will have to wear it longer than if I would have just listened to

the ped.

> >

> > I keep hearing how much harder brachy is to treat, that it takes longer,

etc. etc. and I can't help feeling discouraged. I just don't want my kid in a

helmet that long, I'm sorry. Maybe I'm selfish, but I can't imagine having to

wear a helmet 23 hours a day, so what makes us think it doesn't bother our

babies? They just can't do anything about it.

> >

> > How long were your kids in their helmet? Just wondering. I need a bit of

positive encouragement.

> >

>

[Guest guest]

Thank you so much everyone who responded to my post. You all said exactly what I

needed to hear. Just knowing that everyone who has had a band has no regrets is

very encouraging. I just want what's best for my little guy. Thanks again, I

can't tell you how much the support means.

> > >

> > > I can't stop feeling like I hate this. It's only been a couple days, so we

are still in the breaking-in period, and I find myself counting down the minutes

for my son's hour break to take his helmet off. I am dreading day 5 when he goes

to 23 hours a day. I know it's not that bad, and we will get used to it, and

blah blah blah.

> > >

> > > I think what's hard for me is not having a definite end date to look

forward to. I don't like the " 4-6 month range " we were given. I want it to take

4 months, no more. I'm also mad at myself that we didn't do this sooner. I was

in a bit of denial after my son's ped noticed his brachy at his 4 month appt and

referred us to a neurosurgeon, but I kept putting it off, and now he is 6.5

months old and will have to wear it longer than if I would have just listened to

the ped.

> > >

> > > I keep hearing how much harder brachy is to treat, that it takes longer,

etc. etc. and I can't help feeling discouraged. I just don't want my kid in a

helmet that long, I'm sorry. Maybe I'm selfish, but I can't imagine having to

wear a helmet 23 hours a day, so what makes us think it doesn't bother our

babies? They just can't do anything about it.

> > >

> > > How long were your kids in their helmet? Just wondering. I need a bit of

positive encouragement.

> > >

> >

>