update on Tavin (in KY)

[Guest guest]

Howdy everyone....

Hope everyone and their kids are doing well.

Boy, being a stay at home mom is nothing like I ever expected. I thought I

would have SOME spare time. I have very little.

Anywo, I wanted to tell you about Tavin and his progress with his " crash,

boom, bang helmet " (our little knick name for it)!!. He had his one month

follow up with his Hanger helmet. Tavin is now just over 8 months old and

has been wearing the helmet since the very end of March. We were very lucky

in that he has tolerated everything so well. We have had no problems to

speak of. His head has been rounding very nicely. We noticed a difference

in the first week (he had right sided plagio). The helmet now fits more

snuggly and he is a little less happy about having it on and off. But

overall doesn't seem to mind things a bit.

QUESTION: Do other kids hit their heads with their hands? With and without

the helmet on? Tavin sometimes will just start patting his head. Didn't

know if I should be concerned?

Because Tavin was a preemie (31 weeks), we recently had a follow up

appointment with the Neonatologist. She freaked me out!! She was tickled

that Tavin was wearing a helmet for his plagio. But she then informed us

that his 'ridge' (from the forehead bossing) was most likely due to cranio.

and wanted to do x-rays. We declined. Prior to the casting for his Hanger

Helmet, we had x-rays done. Wouldn't the premature closing of the suture in

his forehead have shown up then? I asked the orthotist about this at that

follow-up appointment and he assured me that the 'ridge' will work its way

out, along with the ear misalignment. Ugh.... I was starting to worry.

It is amazing how these Doctors and other medical professionals all have

differing ideas and opinions.

We are back to being happy with his progress and are just waiting for those

ears to line up and for that slight 'ridge' to flatten out.

It is funny.... today I was in a Hallmark store with Tavin in his stroller

(with helmet on, of course) and you can hear people go, Oohh. Then they get

a peek of him and kind of just silently walk away. I think they are all

freaked out. Now, I will admit at first this all bothered me. But today I

totally forgot he had his helmet on and thought to myself what is everyone's

problem? Then I realized--oh yeah, the helmet. But then I put myself in

their shoes. I would probably stare out of curiosity but don't know if I

would have the courage to ask about it. I always thank people for asking.

I also made handouts with info about people in my area that make cranial

orthosis, to hand out when people ask about it.

Oh, and the other thing I wanted to mention is that I ran into a lady at the

airport who is currently using COPC of Indiana and is very happy with their

product. She said her 7 month old son was doing well with that helmet and

was very pleased with Bob Haven, the orthotist. I know I have heard a lot

of negative stuff about COPC, so I wanted to share a positive story.

There will be more updates on the insurance battles/roller coaster ride to

come later!

Janet

mom of Tavin (8 mo in a Hanger Helmet x 6 weeks)

Louisville, KY

For any newbies in the KY/IN area that may need the info:

Hanger Prosthetics and Orthotics

100 Executive Park/St. s, KY (502) 899-3770

1023 E Broadway/downtown Louisville, KY(502) 585-2139

1726 State St/New Albany, IN (812) 949-2641

contact person: Kerr

www.hanger.com

Center for Orth. & Pros. Care

1939 State St. New Albany, IN

(812)941-0966

contact person: Bob Haven

www.centeropcare.com

[Guest guest]

Hi Janet:

Thanks for the great update on Tavin's progress. Let me try to answer

your other concerns/questions below.

The helmet now fits more

> snuggly and he is a little less happy about having it on and off.

But

> overall doesn't seem to mind things a bit.

Helmets shouldn't be toooo difficult to put on or take off, so if

it's more work than you think it should be, perhaps it could use a

small adjustment.

>

> QUESTION: Do other kids hit their heads with their hands? With

and without

> the helmet on? Tavin sometimes will just start patting his head.

Didn't

> know if I should be concerned?

I doubt it's anything to worry about, if it continues I'd ask your Dr

about it, otherwise, it's probably just a habit for a short time.

>

> Because Tavin was a preemie (31 weeks), we recently had a follow up

> appointment with the Neonatologist. She freaked me out!! She was

tickled

> that Tavin was wearing a helmet for his plagio. But she then

informed us

> that his 'ridge' (from the forehead bossing) was most likely due to

cranio.

> and wanted to do x-rays. We declined. Prior to the casting for

his Hanger

> Helmet, we had x-rays done. Wouldn't the premature closing of the

suture in

> his forehead have shown up then?

Yikes, I'd be concerned too. Premature fusion could have happened

between his previous Xrays & now, so IF you want to be sure it's ok,

I'd go w/the xrays again.? I had similar concerns with my daughter

back in her helmet days where we had Xrays that were neg but after

some other concerns, we were told to get Xrays again. WE didn't & it

was fine, but I was totally freaked, so I can relate!

I asked the orthotist about this at that

> follow-up appointment and he assured me that the 'ridge' will work

its way

> out, along with the ear misalignment. Ugh.... I was starting to

worry.

That's a good sign, keep your eye on the area over the coming wks, IF

that ridge doesn't round out or get better, then I'd look into the

Xrays or CTscan again.

Thanks for sharing the good COPC story you heard about too!! Have a

great Mother's Day

Debbie

[Guest guest]

Janet,

Thank you for posting about Tavin's Hanger helmet update! I'm very

happy to hear about his continued rounding. Since the helmet's

getting snug, maybe he is having a growth spurt and an adjustment

might be right around the corner!

I have never seen a baby in a helmet or band in person; I keep

looking, though! It's neat you ran into a COPC'er in the airport,

and wonderful to hear about her baby's good experience there. Thank

you so much for communicating that!

I hope Debbie posting about her daughter having a second x-ray was

helpful to you... I would have been also taken aback and surprised

by the neonatalogist's comment; perhaps you could consider a second

x-ray in some time just for peace of mind.

Keep us posted when you can,

Christie (Mom to Repo'd Remy)

> Howdy everyone....

> Hope everyone and their kids are doing well.

>

> Boy, being a stay at home mom is nothing like I ever expected. I

thought I

> would have SOME spare time. I have very little.

>

> Anywo, I wanted to tell you about Tavin and his progress with

his " crash,

> boom, bang helmet " (our little knick name for it)!!. He had his

one month

> follow up with his Hanger helmet. Tavin is now just over 8 months

old and

> has been wearing the helmet since the very end of March. We were

very lucky

> in that he has tolerated everything so well. We have had no

problems to

> speak of. His head has been rounding very nicely. We noticed a

difference

> in the first week (he had right sided plagio). The helmet now

fits more

> snuggly and he is a little less happy about having it on and off.

But

> overall doesn't seem to mind things a bit.

>

> QUESTION: Do other kids hit their heads with their hands? With

and without

> the helmet on? Tavin sometimes will just start patting his head.

Didn't

> know if I should be concerned?

>

> Because Tavin was a preemie (31 weeks), we recently had a follow up

> appointment with the Neonatologist. She freaked me out!! She was

tickled

> that Tavin was wearing a helmet for his plagio. But she then

informed us

> that his 'ridge' (from the forehead bossing) was most likely due

to cranio.

> and wanted to do x-rays. We declined. Prior to the casting for

his Hanger

> Helmet, we had x-rays done. Wouldn't the premature closing of the

suture in

> his forehead have shown up then? I asked the orthotist about this

at that

> follow-up appointment and he assured me that the 'ridge' will work

its way

> out, along with the ear misalignment. Ugh.... I was starting to

worry.

>

> It is amazing how these Doctors and other medical professionals

all have

> differing ideas and opinions.

>

> We are back to being happy with his progress and are just waiting

for those

> ears to line up and for that slight 'ridge' to flatten out.

>

> It is funny.... today I was in a Hallmark store with Tavin in his

stroller

> (with helmet on, of course) and you can hear people go, Oohh.

Then they get

> a peek of him and kind of just silently walk away. I think they

are all

> freaked out. Now, I will admit at first this all bothered me.

But today I

> totally forgot he had his helmet on and thought to myself what is

everyone's

> problem? Then I realized--oh yeah, the helmet. But then I put

myself in

> their shoes. I would probably stare out of curiosity but don't

know if I

> would have the courage to ask about it. I always thank people for

asking.

> I also made handouts with info about people in my area that make

cranial

> orthosis, to hand out when people ask about it.

>

> Oh, and the other thing I wanted to mention is that I ran into a

lady at the

> airport who is currently using COPC of Indiana and is very happy

with their

> product. She said her 7 month old son was doing well with that

helmet and

> was very pleased with Bob Haven, the orthotist. I know I have

heard a lot

> of negative stuff about COPC, so I wanted to share a positive

story.

>

> There will be more updates on the insurance battles/roller coaster

ride to

> come later!

>

> Janet

> mom of Tavin (8 mo in a Hanger Helmet x 6 weeks)

> Louisville, KY

>

> For any newbies in the KY/IN area that may need the info:

> Hanger Prosthetics and Orthotics

> 100 Executive Park/St. s, KY (502) 899-3770

> 1023 E Broadway/downtown Louisville, KY(502) 585-2139

> 1726 State St/New Albany, IN (812) 949-2641

> contact person: Kerr

> www.hanger.com

>

> Center for Orth. & Pros. Care

> 1939 State St. New Albany, IN

> (812)941-0966

> contact person: Bob Haven

> www.centeropcare.com

[Guest guest]

Hi Janet. My son Dylan (will be 12 months on 5/15) is in a Starband and

has had it for 7 weeks now. I hate taking it off of him because he will

always hit his head and get a bump or red mark. He runs right into

everything with that noggin. I think he's so used to his head being

protected. I am a little concerned about when we're done. Our orthotist

says that he'll have to hit his head a few times to realize that he has to

be carefull. I must say, I don't worry about him as much since he has the

helmet on. He just started walking so it's worked out great.

I had a hard time at first taking him out in public. One woman at the mall

came up to me and asked what was wrong with his head. This was at the

beginning so I was shocked and felt very hurt. Now, I welcome the questions

- as long as people have some tact. I know that I wouldn't ask someone why

their child had a helmet if I didn't know what it was. But that's just me.

Now, sometimes I forget that the helmet looks abnormal to other people

because it looks so normal to me. We're so used to it and I forget why

people are staring too. I NEVER thought we'd get to feeling like that. We

were so emotional at first.

My husband and I both said at the beginning that we're going to have to have

a " thick skin " about this. It's hard when it has to do with your child.

I'm so sensitive when it comes to Dylan. I thought I was over all of my

insecurities. I don't know if it's because I'm a first-time mom or if I'll

always feel this way. I think it's easier dealing with helmet questions

than when people would make comments about the flat spot. One cousin said

to Dylan: " Your parents need to put you on your belly more " . I was so

offended. Since we saw the flattening, he was always on his belly when

awake and we tried everything to keep him off the flat spot. Sometimes you

have to let those things go and realize that most people don't know anything

about plagio so they're going to say insensitive things once in awhile or

they may stare and wonder. When someone asks me now about it, I take it as

an opportunity to educate them. I think it's so important that more people

learn about it so that they can prevent it with their babies or educate

others around them with babies.

Thanks for sharing all of your thoughts and feelings. It's always great to

hear that others feel the same way that I do. Good luck with Tavin's head

rounding!

Beth

Grand Rapids, MI

>From: " Janet " <syllicat@...>

>Reply-Plagiocephaly

> " Plagio (E-mail) " <Plagiocephaly >

>Subject: update on Tavin (in KY)

>Date: Fri, 7 May 2004 19:11:15 -0400

>

>Howdy everyone....

>Hope everyone and their kids are doing well.

>

>Boy, being a stay at home mom is nothing like I ever expected. I thought I

>would have SOME spare time. I have very little.

>

>Anywo, I wanted to tell you about Tavin and his progress with his " crash,

>boom, bang helmet " (our little knick name for it)!!. He had his one month

>follow up with his Hanger helmet. Tavin is now just over 8 months old and

>has been wearing the helmet since the very end of March. We were very

>lucky

>in that he has tolerated everything so well. We have had no problems to

>speak of. His head has been rounding very nicely. We noticed a difference

>in the first week (he had right sided plagio). The helmet now fits more

>snuggly and he is a little less happy about having it on and off. But

>overall doesn't seem to mind things a bit.

>

>QUESTION: Do other kids hit their heads with their hands? With and

>without

>the helmet on? Tavin sometimes will just start patting his head. Didn't

>know if I should be concerned?

>

>Because Tavin was a preemie (31 weeks), we recently had a follow up

>appointment with the Neonatologist. She freaked me out!! She was tickled

>that Tavin was wearing a helmet for his plagio. But she then informed us

>that his 'ridge' (from the forehead bossing) was most likely due to cranio.

>and wanted to do x-rays. We declined. Prior to the casting for his Hanger

>Helmet, we had x-rays done. Wouldn't the premature closing of the suture

>in

>his forehead have shown up then? I asked the orthotist about this at that

>follow-up appointment and he assured me that the 'ridge' will work its way

>out, along with the ear misalignment. Ugh.... I was starting to worry.

>

>It is amazing how these Doctors and other medical professionals all have

>differing ideas and opinions.

>

>We are back to being happy with his progress and are just waiting for those

>ears to line up and for that slight 'ridge' to flatten out.

>

>It is funny.... today I was in a Hallmark store with Tavin in his stroller

>(with helmet on, of course) and you can hear people go, Oohh. Then they

>get

>a peek of him and kind of just silently walk away. I think they are all

>freaked out. Now, I will admit at first this all bothered me. But today I

>totally forgot he had his helmet on and thought to myself what is

>everyone's

>problem? Then I realized--oh yeah, the helmet. But then I put myself in

>their shoes. I would probably stare out of curiosity but don't know if I

>would have the courage to ask about it. I always thank people for asking.

>I also made handouts with info about people in my area that make cranial

>orthosis, to hand out when people ask about it.

>

>Oh, and the other thing I wanted to mention is that I ran into a lady at

>the

>airport who is currently using COPC of Indiana and is very happy with their

>product. She said her 7 month old son was doing well with that helmet and

>was very pleased with Bob Haven, the orthotist. I know I have heard a lot

>of negative stuff about COPC, so I wanted to share a positive story.

>

>There will be more updates on the insurance battles/roller coaster ride to

>come later!

>

>Janet

>mom of Tavin (8 mo in a Hanger Helmet x 6 weeks)

>Louisville, KY

>

>For any newbies in the KY/IN area that may need the info:

>Hanger Prosthetics and Orthotics

>100 Executive Park/St. s, KY (502) 899-3770

>1023 E Broadway/downtown Louisville, KY(502) 585-2139

>1726 State St/New Albany, IN (812) 949-2641

>contact person: Kerr

>www.hanger.com

>

>Center for Orth. & Pros. Care

>1939 State St. New Albany, IN

>(812)941-0966

>contact person: Bob Haven

>www.centeropcare.com

>

>

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