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Dylan's new Starband

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Hi Bonnie:

Like Kendra already replied to you, this is somewhat common in the

beginning of wearing a band. I'm not a tort. expert either though, I

am sure will reply to you with her expert advice.!

You also asked if there are any side effects to the STARband. I'm

assuming you are wondering about physical or emotional delays? To my

knowledge, there are not. I have been a member of this group for 1.5

yrs now and have never heard of any developmental delays as a result

of any type of band or helmet therapy. My daughter wore both the

STARband & DOCband and has no developmental delays today - she is 26

mos old..

Make sure Dylan's orthotist is educated & experienced in treating

plagio baby's with the STARband.

I hope you start to see improvement soon! Please be sure to keep us

updated. Good luck.

Debbie Abby's mom DOCGrad

MI

> Debbie,

>

> Thanks for your kind words. We'll keep you posted. I notice he's

been

> tilting more than before. Is that normal in the beginning?

>

> Bonnie

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What do you mean? Who are you talking about?

dfishcpo@... wrote: Wow - a little drug therapy never hurts! I don't know what she's on these days, but I think I want some. She actually had a nice/supportive comment about the STARband.DeannaFor more plagio info

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What do you mean? Who are you talking about?

dfishcpo@... wrote: Wow - a little drug therapy never hurts! I don't know what she's on these days, but I think I want some. She actually had a nice/supportive comment about the STARband.DeannaFor more plagio info

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Don't worry about it Bonnie. The person who it was directed to, and the person who it came from have worked everything out.

It was a slip of the "tongue" and a slip of the mouse.

End of story.

Kendra

Re: Re: Dylan's new Starband

What do you mean? Who are you talking about? dfishcpo@... wrote: Wow - a little drug therapy never hurts! I don't know what she's on these days, but I think I want some. She actually had a nice/supportive comment about the STARband.DeannaFor more plagio info

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Hi Bonnie,

It could be that Dylan is feeling a little " off " from himself with his new

hat, and tort kids as I have experienced do tend to tilt or revert back to

tilting for a period making it seem worse when they need that comfort zone

position. They tend to do this when learning new milestones like crawling,

walking, and even with teething and illness. I have learned through this

journey that just when I think its worse, its not! The tilt will come and

go, but your therapy must remain a constant for as long as possible in my

opinion- especially at a younger age when they can't run and squirm away from

you as much!! You can also try more " righting " exercises- which will

strengthen the non-tort muscle. The tort muscle needs to be stretched out,

but the non-tort muscle can be so weak that it doesn't have enough " pull "

effect to actually right the head now that the muscle has given way on the

other side. You can sit your child on your lap, facing the tv with Elmo and

friends, and tilt towards the tort side. Your child will have a natural

instinct to keep the head in an upright position, instead of sideways and

will only be able to do this by using that non-tort muscle. After time, the

tilt will get better as long as you continue to monitor that the tort muscle

is stretched out as well and continue to do exercises to ensure that it is.

Good luck to you- keep the faith, I have learned to be soooo patient with

tort- it can really play games with you thinking one day its gone, the next

its worse! Hang in there! As Marci suggested, the

www.torticolliskids is a great sounding board for lots of

tips and parents experiencing the same thing- many of us are members of both

since they are so related for some of us! Please keep us posted on Dylan!

' Mom

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!

Thanks for the informative advice on treating the TORT. That exercise is one thing my therapist showed me to do. I'll have to do it more often.

Bonnie

rella1234@... wrote: Hi Bonnie,It could be that Dylan is feeling a little "off" from himself with his new hat, and tort kids as I have experienced do tend to tilt or revert back to tilting for a period making it seem worse when they need that comfort zone position. They tend to do this when learning new milestones like crawling, walking, and even with teething and illness. I have learned through this journey that just when I think its worse, its not! The tilt will come and go, but your therapy must remain a constant for as long as possible in my opinion- especially at a younger age when they can't run and squirm away from you as much!! You can also try more "righting" exercises- which will strengthen the non-tort muscle. The tort muscle needs to be stretched out, but the non-tort muscle can be so weak that it doesn't have enough "pull" effect to actually right the head now that the muscle has given way on the other side. You can sit your child on your lap, facing the tv with Elmo and friends, and tilt towards the tort side. Your child will have a natural instinct to keep the head in an upright position, instead of sideways and will only be able to do this by using that non-tort muscle. After time, the tilt will get better as long as you continue to monitor that the tort muscle is stretched out as well and continue to do exercises to ensure that it is. Good luck to you- keep the faith, I have learned to be soooo patient with tort- it can really play games with you thinking one day its gone, the next its worse! Hang in there! As Marci suggested, the www.torticolliskids is a great sounding board for lots of tips and parents experiencing the same thing- many of us are members of both since they are so related for some of us! Please keep us posted on Dylan!' MomFor more plagio info

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Bonnie,

Great!! So you know what my babbling was all about! I make a game out of

this and do it as often as possible, and you can even be creative and use

different positions that will generate the same goal. Good luck to you!!!

' Mom

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  • 1 year later...
Guest guest

Hi Beth-

I had to hop on here, since we are also in GR and my 6.5 month

daughter has a STARBand from MFB. She was banded on Feb 10, but

we've had some issues with fit, and so she has really only been

wearing it about 3-4 weeks off and on. Who do you see at MFB?

The best thing I did to get used to Abigail's band was to decorate

it and put her name on it. People in the grocery store stop to talk

to her, and it really breaks the ice and makes me feel less self-

conscious about it. I found I just had to get over being shy, and I

started looking people in the eye when they stare, and I am always

willing to explain what it's for. Within the first week, we were so

used to seeing her wearing it, that when we had to have it off, she

looked funny to us! You really will get used to it, I promise!

Who is your ped? Maybe I've heard of him/her. Feel free to email

me if you have questions... two of the mods are also from here in

GR, too!

, mom to Abigail - STARBanded 2/10 & 3/16 and tort

> My son Dylan, is 10 months old. He was first diagnosed with

> positional plagiocephaly at 4 months old. He was seeing our

family

> doctor at the time. I have had friends with babies who've had

flat

> spots on their heads and all of their heads rounded out. So, when

> he was six months old, our doctor referred him to a cranio-facial

> surgeon to see if a helmet was needed. We felt as if our doctor

was

> being too aggressive and didn't want to believe that Dylan might

> need a helmet. So, at 8 months, we switched Dylan to a

pediatrician

> to get a second opinion. She recommended a helmet. He just

received

> his Orthomerica Starband on Friday and has adjusted so well to

it.

> He barely even notices it. My husband and I are not doing as

well.

> We are having a hard time seeing our little baby with a helmet

> covering everything but his face and ears. I had no idea it would

> be so big! I don't really have any questions for the group but

> would like to hear how other parents have adjusted to this.

>

> Thanks,

>

> Beth

> Grand Rapids, MI

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Hi Beth,

I just wanted to welcome you to the group and tell you that I think we

all have a hard time at first seeing our precious little ones in these

" hugh " helmets/bands, but believe me, you'll get used to it real soon.

After awhile, he'll look 'odd' to you with out it. And, before you

know it, he'll be out of it and you'll even miss it a bit. I know that

is hard to believe, but you'll see what I am talking about soon enough

:-) Please keep us posted on him!!

mom to makenna LLUMC helmet grad.

> My son Dylan, is 10 months old. He was first diagnosed with

> positional plagiocephaly at 4 months old. He was seeing our family

> doctor at the time. I have had friends with babies who've had flat

> spots on their heads and all of their heads rounded out. So, when

> he was six months old, our doctor referred him to a cranio-facial

> surgeon to see if a helmet was needed. We felt as if our doctor was

> being too aggressive and didn't want to believe that Dylan might

> need a helmet. So, at 8 months, we switched Dylan to a pediatrician

> to get a second opinion. She recommended a helmet. He just received

> his Orthomerica Starband on Friday and has adjusted so well to it.

> He barely even notices it. My husband and I are not doing as well.

> We are having a hard time seeing our little baby with a helmet

> covering everything but his face and ears. I had no idea it would

> be so big! I don't really have any questions for the group but

> would like to hear how other parents have adjusted to this.

>

> Thanks,

>

> Beth

> Grand Rapids, MI

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Beth,

Welcome to the group! It gets easier as time goes on, you'll adjust.

I'm so happy to hear that Dylan is adjusting so well. Please keep us

posted on his progress.

> My son Dylan, is 10 months old. He was first diagnosed with

> positional plagiocephaly at 4 months old. He was seeing our family

> doctor at the time. I have had friends with babies who've had flat

> spots on their heads and all of their heads rounded out. So, when

> he was six months old, our doctor referred him to a cranio-facial

> surgeon to see if a helmet was needed. We felt as if our doctor

was

> being too aggressive and didn't want to believe that Dylan might

> need a helmet. So, at 8 months, we switched Dylan to a

pediatrician

> to get a second opinion. She recommended a helmet. He just

received

> his Orthomerica Starband on Friday and has adjusted so well to it.

> He barely even notices it. My husband and I are not doing as

well.

> We are having a hard time seeing our little baby with a helmet

> covering everything but his face and ears. I had no idea it would

> be so big! I don't really have any questions for the group but

> would like to hear how other parents have adjusted to this.

>

> Thanks,

>

> Beth

> Grand Rapids, MI

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Hi Beth,

The helmet never really bothered me, I was so happy to be getting my

son treatment. After a while you will get used to it and it will

become a part of Dylan. Is your's white where you can decorate it?

That helps. Glad to hear that he has adjusted so well, you will too.

Hugs, Natasha

> My son Dylan, is 10 months old. He was first diagnosed with

> positional plagiocephaly at 4 months old. He was seeing our family

> doctor at the time. I have had friends with babies who've had flat

> spots on their heads and all of their heads rounded out. So, when

> he was six months old, our doctor referred him to a cranio-facial

> surgeon to see if a helmet was needed. We felt as if our doctor

was

> being too aggressive and didn't want to believe that Dylan might

> need a helmet. So, at 8 months, we switched Dylan to a

pediatrician

> to get a second opinion. She recommended a helmet. He just

received

> his Orthomerica Starband on Friday and has adjusted so well to it.

> He barely even notices it. My husband and I are not doing as

well.

> We are having a hard time seeing our little baby with a helmet

> covering everything but his face and ears. I had no idea it would

> be so big! I don't really have any questions for the group but

> would like to hear how other parents have adjusted to this.

>

> Thanks,

>

> Beth

> Grand Rapids, MI

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Hi Beth and welcome!! Man, is it in the water up there? lol It

will get easier to see Dylan in his STARBand. It is much harder on

us the parents than the babies. You'll get use to it and actually

think he looks " naked " without it. Keep us updated on his progress.

Dustie, mom to , DOCGrad'03

Texas

> My son Dylan, is 10 months old. He was first diagnosed with

> positional plagiocephaly at 4 months old. He was seeing our

family

> doctor at the time. I have had friends with babies who've had

flat

> spots on their heads and all of their heads rounded out. So, when

> he was six months old, our doctor referred him to a cranio-facial

> surgeon to see if a helmet was needed. We felt as if our doctor

was

> being too aggressive and didn't want to believe that Dylan might

> need a helmet. So, at 8 months, we switched Dylan to a

pediatrician

> to get a second opinion. She recommended a helmet. He just

received

> his Orthomerica Starband on Friday and has adjusted so well to

it.

> He barely even notices it. My husband and I are not doing as

well.

> We are having a hard time seeing our little baby with a helmet

> covering everything but his face and ears. I had no idea it would

> be so big! I don't really have any questions for the group but

> would like to hear how other parents have adjusted to this.

>

> Thanks,

>

> Beth

> Grand Rapids, MI

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Hi Beth,

Getting used to the helmet usually is harder on the parents!

Believe it or not, you'll forget he's wearing it in no time. I'd go

out w/Hannah and notice people staring at her and actually wonder

why for a second until the helmet would pop into my mind! It does

get easier though, and eventually you'll think he looks funny with

it off! I'm glad Dylan is adjusting so well though.

, mom to Hannah, DOC #3 3/30

Cape Cod, Ma

> My son Dylan, is 10 months old. He was first diagnosed with

> positional plagiocephaly at 4 months old. He was seeing our

family

> doctor at the time. I have had friends with babies who've had

flat

> spots on their heads and all of their heads rounded out. So, when

> he was six months old, our doctor referred him to a cranio-facial

> surgeon to see if a helmet was needed. We felt as if our doctor

was

> being too aggressive and didn't want to believe that Dylan might

> need a helmet. So, at 8 months, we switched Dylan to a

pediatrician

> to get a second opinion. She recommended a helmet. He just

received

> his Orthomerica Starband on Friday and has adjusted so well to

it.

> He barely even notices it. My husband and I are not doing as

well.

> We are having a hard time seeing our little baby with a helmet

> covering everything but his face and ears. I had no idea it would

> be so big! I don't really have any questions for the group but

> would like to hear how other parents have adjusted to this.

>

> Thanks,

>

> Beth

> Grand Rapids, MI

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Thanks so much for the words of encouragement. It helps so much to

talk to other parents about this. I've noticed that a lot of our

family members and friends who know nothing about this condition

tend to say insensitive things sometimes. I can't count how many

times I've heard " He's going to hate wearing that helmet "

or, " That's going to be hard on you " . I feel that if they know that

we're already having a hard enough time with it, we really don't

need to hear negative comments. I'm trying so hard to focus on the

positives. Knowing that we're doing the best thing for Dylan at

this point helps get us through it. I can't wait to start seeing

the improvements. I'm sure that is exciting!

Beth

Grand Rapids, MI

> > My son Dylan, is 10 months old. He was first diagnosed with

> > positional plagiocephaly at 4 months old. He was seeing our

> family

> > doctor at the time. I have had friends with babies who've had

> flat

> > spots on their heads and all of their heads rounded out. So,

when

> > he was six months old, our doctor referred him to a cranio-

facial

> > surgeon to see if a helmet was needed. We felt as if our doctor

> was

> > being too aggressive and didn't want to believe that Dylan might

> > need a helmet. So, at 8 months, we switched Dylan to a

> pediatrician

> > to get a second opinion. She recommended a helmet. He just

> received

> > his Orthomerica Starband on Friday and has adjusted so well to

> it.

> > He barely even notices it. My husband and I are not doing as

> well.

> > We are having a hard time seeing our little baby with a helmet

> > covering everything but his face and ears. I had no idea it

would

> > be so big! I don't really have any questions for the group but

> > would like to hear how other parents have adjusted to this.

> >

> > Thanks,

> >

> > Beth

> > Grand Rapids, MI

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,

We see Ellie at MFB. Who do you see? Dylan hasn't been wearing his this

week because he's had a virus and a fever for 5 days. We see Dr.

Bates at Grand Rapids Pediatrics. It's great that you're doing the helmet

at 6 months. I'm sure it will be very successful at her age. Thanks for

the advice on dealing with the stares out in public. We took Dylan to

church and to Meijer last weekend and it wasn't too bad. People definitely

took a longer glance than usual. I know that I was watching for it too.

Thanks so much for your support and feel free to email me anytime as well.

Dylan typed you this message:

89lplllllloooooooooooooooooooooy=4trfvgggggggggggggggggggggggggggggggggggggggggg\

ggc

Not sure what it means but he's definitely having fun at the computer with

mom!

Beth

GR, MI

>From: " " <allison@...>

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: Re: Dylan's new Starband

>Date: Tue, 23 Mar 2004 19:01:30 -0000

>

>Hi Beth-

>I had to hop on here, since we are also in GR and my 6.5 month

>daughter has a STARBand from MFB. She was banded on Feb 10, but

>we've had some issues with fit, and so she has really only been

>wearing it about 3-4 weeks off and on. Who do you see at MFB?

>

>The best thing I did to get used to Abigail's band was to decorate

>it and put her name on it. People in the grocery store stop to talk

>to her, and it really breaks the ice and makes me feel less self-

>conscious about it. I found I just had to get over being shy, and I

>started looking people in the eye when they stare, and I am always

>willing to explain what it's for. Within the first week, we were so

>used to seeing her wearing it, that when we had to have it off, she

>looked funny to us! You really will get used to it, I promise!

>

>Who is your ped? Maybe I've heard of him/her. Feel free to email

>me if you have questions... two of the mods are also from here in

>GR, too!

>

>, mom to Abigail - STARBanded 2/10 & 3/16 and tort

>

>

> > My son Dylan, is 10 months old. He was first diagnosed with

> > positional plagiocephaly at 4 months old. He was seeing our

>family

> > doctor at the time. I have had friends with babies who've had

>flat

> > spots on their heads and all of their heads rounded out. So, when

> > he was six months old, our doctor referred him to a cranio-facial

> > surgeon to see if a helmet was needed. We felt as if our doctor

>was

> > being too aggressive and didn't want to believe that Dylan might

> > need a helmet. So, at 8 months, we switched Dylan to a

>pediatrician

> > to get a second opinion. She recommended a helmet. He just

>received

> > his Orthomerica Starband on Friday and has adjusted so well to

>it.

> > He barely even notices it. My husband and I are not doing as

>well.

> > We are having a hard time seeing our little baby with a helmet

> > covering everything but his face and ears. I had no idea it would

> > be so big! I don't really have any questions for the group but

> > would like to hear how other parents have adjusted to this.

> >

> > Thanks,

> >

> > Beth

> > Grand Rapids, MI

>

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Debbie,

I know exactly how you felt. We love MFB. They're great there. We see

Ellie who is a great Orthotist. She takes so much time with us and called

me before we even met her because the receptionist told her that I had

questions. It helps so much when you feel like your baby is getting great

care. Is Abby done with her band? How is it going? Thanks so much for the

reply and I'm sure we'll talk again soon.

Beth

GR, MI

>From: " Debbie " <dj2kirby@...>

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: Re: Dylan's new Starband

>Date: Tue, 23 Mar 2004 18:58:32 -0000

>

>Hi Beth & welcome to our group:

>You must be going to MFB for Dylan's STARband?! I'm in GR as are

>several other members, small world!

>I too had a very very difficult time seeing my Abby in her band for

>the first couple wks even. I even cried about it, meanwhile, she was

>happy as a clam & couldn't have cared less. You'll soon adjust to

>it, trust me, if I did, you will! After the first couple wks or so,

>I no longer noticed it as it became a part of her!

>I'm glad Dylan is doing so well in it. He's on his way to a rounder

>head. Please keep us posted on his progress.

>Debbie

>Jenison, MI

>

> >

> > > My son Dylan, is 10 months old. He was first diagnosed with

> > > positional plagiocephaly at 4 months old. He was seeing our

> > family

> > > doctor at the time. I have had friends with babies who've had

> > flat

> > > spots on their heads and all of their heads rounded out. So,

>when

> > > he was six months old, our doctor referred him to a cranio-

>facial

> > > surgeon to see if a helmet was needed. We felt as if our doctor

> > was

> > > being too aggressive and didn't want to believe that Dylan might

> > > need a helmet. So, at 8 months, we switched Dylan to a

> > pediatrician

> > > to get a second opinion. She recommended a helmet. He just

> > received

> > > his Orthomerica Starband on Friday and has adjusted so well to

> > it.

> > > He barely even notices it. My husband and I are not doing as

> > well.

> > > We are having a hard time seeing our little baby with a helmet

> > > covering everything but his face and ears. I had no idea it

>would

> > > be so big! I don't really have any questions for the group but

> > > would like to hear how other parents have adjusted to this.

> > >

> > > Thanks,

> > >

> > > Beth

> > > Grand Rapids, MI

>

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