Re: Does my son REALLY need a helmet?

[Guest guest]

My son is getting his off Monday after 8 long months--but from our perspective,

it has been totally worth it. Where is the flat spot? E's was on the back side

of his head, and his ears, eyes, jaw and cheekbones had noticeably shifted.

That was the kicker for us--the back of a head may round out some, but facial

shifting will not fix on its own.

On a lighter note, it has been wonderful having a helmet on during this

dangerous stage of crawling and walking and I wish he could wear it another 6

months as he gets the hang of balance--not really, but it has been helpful. And

now that it is bitterly cold, he stays a lot warmer than the rest of us--

Best wishes on coming to a good decision. The kicker is that if you do get a

helmet, you'll never know 100% whether correction was due to the helmet or just

time. But if you don't get one and it doesn't self-correct--is the shape of his

head RIGHT NOW something that you will be at peace with?

And for the record, I dont' think my son has ever really been bothered wearing

the helmet--we got it at 6 1/2 months, and while he doesn't like the on/off

process, the wearing is not uncomfortable or annoying to him at all, I dont'

think.

Betsy

From: appslivyp <appslivyp@...>

Subject: Does my son REALLY need a helmet?

Plagiocephaly

Date: Thursday, January 7, 2010, 3:16 PM

 

We are going to Cranial Tech in Charlotte on Wed. We have had several

" professional opinions " as well as observational opinions from friends and

family. The PT, and two pediatricians in his practice recommend a consult from

Cranial Tech. He is scoring a 5 according to the PT on the scale. Most people

(friends and family) don't really see the flatness being prevolent and to many,

we have to point it out. Is the DOC band really worth it for minor to moderate

cases? My son is 5 mo old and not sitting up yet. Won't this work it's way out

as he grows? We aren't convienced whatsoever this is necessary and worth the

time, money and the annoyance of the band for my son. We are aggressively

working with him on his sleep position, sitting up, and never having him on his

back. Any opinions and recommendations are welcome.

[Guest guest]

if you havn't had a consult I would get one and then make a decision. If it is mild it may be something you can just try repo, and you certainly can try that first. I can tell you that my son was mild/moderate and I did repo first from 4-6 mos, well he got a band at 6mos, and has had it 6 weeks and improved by about 5 mm already and looks pretty normal to me now. I can tell you that it was a huge worry for me about weather to band or not, and my husband was very opposed to the idea, which did not help. But we did get the band, and I can say that it ended up being SO much easier than I ever thought and such a huge relief to me to see him getting corrected. I agonized over the decision and felt so relieved once he did get it. So it also comes down to how you feel about it, and keep in mind how your child may

feel later if it never gets corrected. good luck.

le

7mos

-- On Thu, 1/7/10, appslivyp <appslivyp@...> wrote:

From: appslivyp <appslivyp@...>Subject: Does my son REALLY need a helmet?Plagiocephaly Date: Thursday, January 7, 2010, 1:16 PM

We are going to Cranial Tech in Charlotte on Wed. We have had several "professional opinions" as well as observational opinions from friends and family. The PT, and two pediatricians in his practice recommend a consult from Cranial Tech. He is scoring a 5 according to the PT on the scale. Most people (friends and family) don't really see the flatness being prevolent and to many, we have to point it out. Is the DOC band really worth it for minor to moderate cases? My son is 5 mo old and not sitting up yet. Won't this work it's way out as he grows? We aren't convienced whatsoever this is necessary and worth the time, money and the annoyance of the band for my son. We are aggressively working with him on his sleep position, sitting up, and never having him on his back. Any opinions and recommendations are welcome.

[Guest guest]

Thank you so much for your response. His flatness is on his left side (back) as

well as his back. One doctor and the PT diagnosed Plagiocephaly, and then

another diagnosed a combo of plagio and brachio. He has no facial involvement

at all according to the PT. I also spoke to a childhood friend about this since

her son had one. She wound up with TWO bands. Looking at the pictures she sent,

her son's looked a lot like my son. I saw some improvement but honestly didn't

think his head looked abnormal to begin with. I hope to get a lot of answers and

put my mind at ease on Wed. They are going to have to do A LOT more convincing

of my husband than me. He honestly feels it is ridiculous but then again hasn't

been to the Dr. or PT with me to hear what they have said either.

>

>

> From: appslivyp <appslivyp@...>

> Subject: Does my son REALLY need a helmet?

> Plagiocephaly

> Date: Thursday, January 7, 2010, 3:16 PM

>

>

>  

>

>

>

> We are going to Cranial Tech in Charlotte on Wed. We have had several

" professional opinions " as well as observational opinions from friends and

family. The PT, and two pediatricians in his practice recommend a consult from

Cranial Tech. He is scoring a 5 according to the PT on the scale. Most people

(friends and family) don't really see the flatness being prevolent and to many,

we have to point it out. Is the DOC band really worth it for minor to moderate

cases? My son is 5 mo old and not sitting up yet. Won't this work it's way out

as he grows? We aren't convienced whatsoever this is necessary and worth the

time, money and the annoyance of the band for my son. We are aggressively

working with him on his sleep position, sitting up, and never having him on his

back. Any opinions and recommendations are welcome.

>

[Guest guest]

Go through the consult and see what the numbers say.  Depending on how moderate is moderate, they might say he doesn't need one at all.  When we were first told of the possibility of the helmet we were horroified.  Went to a crainofacial plastic surgeon at ~2 months and at that point her plagio was ~6mm so we weren't recommended a band.  (generally recommend 10mm+) After aggressive repo and extensive PT, we went back two months later to find that her head was now off by more than 2 inches.  Up until I got those numbers and really looked at everything, I didn't think it was all that bad.  Between the time she was casted and the time she got her helmet, it got noticeably worse - even concave in one spot, and I freaked out.  Thank goodness for this group!

In her case it was extreme tortocollis which helped to cause this.  She needed

surgical intervention at 6mos to help release her neck muscles.  We're far from the typical case.Some people with borderline numbers and little to no facial assymetry are fine with not banding, other's aren't.  It's up to you and how you feel about it.  Well and how you think your child will feel about it too.  It's more than just cosmetic in many ways.  Is the shape off enough you won't be able to get a standard bike helmet for instance?  Kind of like braces.  Sure straight teeth are nice, but there are reasons other than the cosmetic depending on your situation.

I'd go browse the older plagio board before you and your husband make a final decision though.  This is something that can't be fixed later so you want to cover all your basis while you can.My personal opinion?  If multiple doctors are recommending that you have it done, your son will probably benefit from it.  Generally even when a child really needs it parents find it to be very difficult to get a doctor to even consider writing a referral.  I haven't heard of any case where multiple physicians were recommending a band unnecessarily at any rate.

I wish you and your husband luck in this incredibly difficult time.Elaine (twin A), tort & plagio, graduated from her second helmet 6/09 at 13 monthsOn Sat, Jan 9, 2010 at 8:32 AM, appslivyp <appslivyp@...> wrote:

 

Thank you so much for your response. His flatness is on his left side (back) as well as his back. One doctor and the PT diagnosed Plagiocephaly, and then another diagnosed a combo of plagio and brachio. He has no facial involvement at all according to the PT. I also spoke to a childhood friend about this since her son had one. She wound up with TWO bands. Looking at the pictures she sent, her son's looked a lot like my son. I saw some improvement but honestly didn't think his head looked abnormal to begin with. I hope to get a lot of answers and put my mind at ease on Wed. They are going to have to do A LOT more convincing of my husband than me. He honestly feels it is ridiculous but then again hasn't been to the Dr. or PT with me to hear what they have said either.

>

>

> From: appslivyp <appslivyp@...>

> Subject: Does my son REALLY need a helmet?

> Plagiocephaly

> Date: Thursday, January 7, 2010, 3:16 PM

>

>

>  

>

>

>

> We are going to Cranial Tech in Charlotte on Wed. We have had several " professional opinions " as well as observational opinions from friends and family. The PT, and two pediatricians in his practice recommend a consult from Cranial Tech. He is scoring a 5 according to the PT on the scale. Most people (friends and family) don't really see the flatness being prevolent and to many, we have to point it out. Is the DOC band really worth it for minor to moderate cases? My son is 5 mo old and not sitting up yet. Won't this work it's way out as he grows? We aren't convienced whatsoever this is necessary and worth the time, money and the annoyance of the band for my son. We are aggressively working with him on his sleep position, sitting up, and never having him on his back. Any opinions and recommendations are welcome.

>

[Guest guest]

Our son is in his 4th week of wearing the band, and we had the same trepidations

as you do, but we can already see a difference. The group at the CT in

Charlotte is WONDERFUL. Chalawn, who is our therapist, has been wonderful to

deal with, and she will be honest with you. We drive 2 1/2 hours each way for

his appointments, but it's well worth it.

We live in a small town where you don't see many children with the bands, but we

have adjusted to it very quickly. Our pediatrician wasn't very convinced, but

she gave us the script anyway. My husband's concern for our son, was that he's

bald and my father was bald, so it's pretty much inevitable with our son, and we

figured a few months now, where he probably won't remember it, will be a lot

better than years of potential comments, and the should a, would a, could a...

The DOC band is really light, and our son really hasn't noticed it much. He

does pull on it a little when he's tired, but I think that's b/c he normally

pulls on his ears, but can't easily get to them. It hasn't affected his or our

lives what so ever. The only thing that we had to get used to is dressing him

lighter.

It's definitely a personal decision, but I'm glad that we have decided to get

the band. Our insurance is great, and we only ended up having an out of pocket

cost of $280, which was a pleasant surprise. Before we went for the

consultation in Charlotte, I sent Scot several emails about my concerns,

and she was great in setting my mind at ease...

> > >

> > >

> > > From: appslivyp <appslivyp@>

> >

> > > Subject: Does my son REALLY need a helmet?

> > > Plagiocephaly <Plagiocephaly%40>

> > > Date: Thursday, January 7, 2010, 3:16 PM

> > >

> > >

> > >

> > >

> > >

> > >

> > > We are going to Cranial Tech in Charlotte on Wed. We have had several

> > " professional opinions " as well as observational opinions from friends and

> > family. The PT, and two pediatricians in his practice recommend a consult

> > from Cranial Tech. He is scoring a 5 according to the PT on the scale. Most

> > people (friends and family) don't really see the flatness being prevolent

> > and to many, we have to point it out. Is the DOC band really worth it for

> > minor to moderate cases? My son is 5 mo old and not sitting up yet. Won't

> > this work it's way out as he grows? We aren't convienced whatsoever this is

> > necessary and worth the time, money and the annoyance of the band for my

> > son. We are aggressively working with him on his sleep position, sitting up,

> > and never having him on his back. Any opinions and recommendations are

> > welcome.

> > >

> >

> >

> >

>

[Guest guest]

A lot of ppl will say get it over while he's young. To me though he

is young, you have time to try repositioning or see if changes happen

once he is sitting up, crawling, etc. We did it with my son so even

though we saw it at 2 month and knew at 6 month what it was we didn't

get a docband (from ct charlotte) until he was 9 month old. If your

son truly is only moderate you will see a lot of results even later so

you do not have to do it now. You can even go to ct, see what they

say, opt to wait and then ask for another consult to see if there is

change.

We did not see significant change with repositioning but many on her

do. We also had lots of family and friends say they couldn't see it.

But in the end I knew you only have until 18-24 month to fix it and I

would not be happy nor would I want to answer questions from him as to

why his head was like that. If his teeth or jaw were crooked I would

fix it so why wouldn't I fix his head.

So we went for our ct consult and once you see the pics at the correct

angles it really draws the attention. Plus once you see that as well

as know it is more prominant in the mirror or from behind, etc you see

it all the time so you are always reminded of it. His measurements

also came back more than I expected. He came back as moderate to

severe. He also had significant ear assymetry. He wore a docband for

3 month from 9-12 month old. He saw even greater improvement than

they anticipated and they did not recommend a 2nd band. However I

still saw some assymetry and flatness so dh and I really debated

whether we should get a 2nd. We did not and its been over 2 yrs and

there has been no noticable improvement so that leads me to believe

that if we had left it there would have also been no significant

improvement.

Also he ended up having undiagnosed fluid in his ears. It caused

undiagnosed hearing problems. The ped won't say but the ent doesn't

feel its related but he is one of the small percentage of children who

despite reciving his 1st set of tubes after 24 month old still needed

a 2nd set only a year later. He also had even his tubes get clogged.

So its always a wonder to us.

On 1/7/10, appslivyp <appslivyp@...> wrote:

> We are going to Cranial Tech in Charlotte on Wed. We have had several

> " professional opinions " as well as observational opinions from friends and

> family. The PT, and two pediatricians in his practice recommend a consult

> from Cranial Tech. He is scoring a 5 according to the PT on the scale. Most

> people (friends and family) don't really see the flatness being prevolent

> and to many, we have to point it out. Is the DOC band really worth it for

> minor to moderate cases? My son is 5 mo old and not sitting up yet. Won't

> this work it's way out as he grows? We aren't convienced whatsoever this is

> necessary and worth the time, money and the annoyance of the band for my

> son. We are aggressively working with him on his sleep position, sitting up,

> and never having him on his back. Any opinions and recommendations are

> welcome.

>

>

--

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-mommy to Emma, Becca, ,

and

A truly rich man is one whose children run into his arms when his

hands are empty. ~Author Unknown