Re: finally, an update on new and anxious:) Got our helmet, got problems

[Guest guest]

:

What a bummer! I can understand you're a bit frustrated after

waiting all this time to get the helmet & it now doesn't fit right.

But it's a good thing that your orthotist realized it wasn't correct

& is getting the problem resolved so quickly! Did they re-cast Kai

or go from the original mold? Is it a STARband or locally made helmet?

Debbie Abby's mom DOCGrad

MI

> Hi, sorry I've been too busy to post for awhile, We finally got

Kai's

> helmet a week ago today after a month of waiting after he got

casted.

> Then after we got it we were having trouble getting it to sit right

> on Kai's head and having trouble with pressure spots staying too

> long. Our orthotist decided he made a mistake and drew the trimline

> above his eyes too high, and the trouble we were having positioning

> it was because we had to try to get it positioned as low as

possible

> on his forehead and then it wasn't quite right elsewhere. He's

> getting a new helmet made at no cost to us, and are supposed to use

> the first one as much as possible until then, but we're having

> trouble with red areas and Kai hasn't had it on since yesterday

> afternoon. It seems when he sleeps in it he rolls around and it

> shifts and slides up on his forehead and gets a red spot there that

> is persistent. He also had swelling around one eye yesterday after

> taking a long nap in the helmet laying on his stomach and putting

> pressure on the part of the helmet that is in front of his ear.

We're

> a little discouraged I'll admit that he hasn't been able to wear

the

> helmet much, seems to be such a delay in treatment. But, I believe

> God guided us in the first part of the process in such a way, and

He

> still is in control I do believe, so I'm leaving it up to Him. If

> anyone out there prays, I'd appreciate yours, that God will

continue

> to work in the process. Good to be back on!! (Kai's mom) in

> Columbia, Mo.

[Guest guest]

,

everything should be fine. I know how worried you are right now. I

was the same way about my daughter. I am still worried. I don't know

if we will be able to get any correction (Katya is 14 months old).

But I am praying, and I will pray for your son too.

Leana (Katya's mom)

> Hi, sorry I've been too busy to post for awhile, We finally got

Kai's

> helmet a week ago today after a month of waiting after he got

casted.

> Then after we got it we were having trouble getting it to sit right

> on Kai's head and having trouble with pressure spots staying too

> long. Our orthotist decided he made a mistake and drew the trimline

> above his eyes too high, and the trouble we were having positioning

> it was because we had to try to get it positioned as low as

possible

> on his forehead and then it wasn't quite right elsewhere. He's

> getting a new helmet made at no cost to us, and are supposed to use

> the first one as much as possible until then, but we're having

> trouble with red areas and Kai hasn't had it on since yesterday

> afternoon. It seems when he sleeps in it he rolls around and it

> shifts and slides up on his forehead and gets a red spot there that

> is persistent. He also had swelling around one eye yesterday after

> taking a long nap in the helmet laying on his stomach and putting

> pressure on the part of the helmet that is in front of his ear.

We're

> a little discouraged I'll admit that he hasn't been able to wear

the

> helmet much, seems to be such a delay in treatment. But, I believe

> God guided us in the first part of the process in such a way, and

He

> still is in control I do believe, so I'm leaving it up to Him. If

> anyone out there prays, I'd appreciate yours, that God will

continue

> to work in the process. Good to be back on!! (Kai's mom) in

> Columbia, Mo.

[Guest guest]

Oh I am so sorry to hear about all the trouble you are having with

Kais helmet.!! Thats awful! I wish you the best of luck and I will be

praying for your son!!

Christi mom to Mya (DOC band 3/6/02)

> Hi, sorry I've been too busy to post for awhile, We finally got

Kai's

> helmet a week ago today after a month of waiting after he got

casted.

> Then after we got it we were having trouble getting it to sit right

> on Kai's head and having trouble with pressure spots staying too

> long. Our orthotist decided he made a mistake and drew the trimline

> above his eyes too high, and the trouble we were having positioning

> it was because we had to try to get it positioned as low as

possible

> on his forehead and then it wasn't quite right elsewhere. He's

> getting a new helmet made at no cost to us, and are supposed to use

> the first one as much as possible until then, but we're having

> trouble with red areas and Kai hasn't had it on since yesterday

> afternoon. It seems when he sleeps in it he rolls around and it

> shifts and slides up on his forehead and gets a red spot there that

> is persistent. He also had swelling around one eye yesterday after

> taking a long nap in the helmet laying on his stomach and putting

> pressure on the part of the helmet that is in front of his ear.

We're

> a little discouraged I'll admit that he hasn't been able to wear

the

> helmet much, seems to be such a delay in treatment. But, I believe

> God guided us in the first part of the process in such a way, and

He

> still is in control I do believe, so I'm leaving it up to Him. If

> anyone out there prays, I'd appreciate yours, that God will

continue

> to work in the process. Good to be back on!! (Kai's mom) in

> Columbia, Mo.

[Guest guest]

-Debbie, finally got back on to see who responded, Our orthotist said

he did not need to recast, just redraw the trimline on his forehead.

It is a STARband and our orthotist modified it himself, I guess some

do, some don't. Won't get the band until next week this time. Finally

tried the helmet again today after having it off for 2 1/2 days for a

red spot on his forehead to heal up, now the skin there is dry and

peeling, any suggestions anyone. My understanding is that you're not

to use any lotion or ointments under the helmet, right? but Kai has

problems with mild eczema and dry skin, I'm afraid washing his hair

everyday like they say to will cause him excessive dryness and then

pressure problems?? He wore the helmet 2 hrs this am and it's been 2

hrs since it's been off. It's still alittle pink. Our orthotist said

that it was from him sweating in it. I read in the booklet that came

with the STARband that they can drill holes in the band to relieve

moisture problems, anyone heard of that being done? I'm afraid with

summer coming on it's only going to get worse. I need to wait until

we get the second helmet and see if most of our problems are solved.

It seems that if Kai sleeps in the helmet he rolls around alot and

one day during a long nap he ended up on his stomach with pressure on

the side of the helmet in front of his ear, it shifted the helmet and

then caused the red spot high on his forehead I mentioned that's

taken days to go away, it also caused swelling around his eye, that

went away a few hours after we took it off, scare us though! We

thought that eye was smaller all the sudden, and then realized it was

swelling. Well, enough, thanks everyone for your support! ,

Kai's mom from Columbia, MO.

-- In Plagiocephaly@y..., " debbieandabby " <dj2kirby@c...> wrote:

> :

> What a bummer! I can understand you're a bit frustrated after

> waiting all this time to get the helmet & it now doesn't fit

right.

> But it's a good thing that your orthotist realized it wasn't

correct

> & is getting the problem resolved so quickly! Did they re-cast Kai

> or go from the original mold? Is it a STARband or locally made

helmet?

> Debbie Abby's mom DOCGrad

> MI

>

>

> --- In Plagiocephaly@y..., " kaneko1232002 " <kaneko1232002@y...>

wrote:

> > Hi, sorry I've been too busy to post for awhile, We finally got

> Kai's

> > helmet a week ago today after a month of waiting after he got

> casted.

> > Then after we got it we were having trouble getting it to sit

right

> > on Kai's head and having trouble with pressure spots staying too

> > long. Our orthotist decided he made a mistake and drew the

trimline

> > above his eyes too high, and the trouble we were having

positioning

> > it was because we had to try to get it positioned as low as

> possible

> > on his forehead and then it wasn't quite right elsewhere. He's

> > getting a new helmet made at no cost to us, and are supposed to

use

> > the first one as much as possible until then, but we're having

> > trouble with red areas and Kai hasn't had it on since yesterday

> > afternoon. It seems when he sleeps in it he rolls around and it

> > shifts and slides up on his forehead and gets a red spot there

that

> > is persistent. He also had swelling around one eye yesterday

after

> > taking a long nap in the helmet laying on his stomach and putting

> > pressure on the part of the helmet that is in front of his ear.

> We're

> > a little discouraged I'll admit that he hasn't been able to wear

> the

> > helmet much, seems to be such a delay in treatment. But, I

believe

> > God guided us in the first part of the process in such a way, and

> He

> > still is in control I do believe, so I'm leaving it up to Him. If

> > anyone out there prays, I'd appreciate yours, that God will

> continue

> > to work in the process. Good to be back on!! (Kai's mom)

in

> > Columbia, Mo.

[Guest guest]

-Debbie, finally got back on to see who responded, Our orthotist said

he did not need to recast, just redraw the trimline on his forehead.

It is a STARband and our orthotist modified it himself, I guess some

do, some don't. Won't get the band until next week this time. Finally

tried the helmet again today after having it off for 2 1/2 days for a

red spot on his forehead to heal up, now the skin there is dry and

peeling, any suggestions anyone. My understanding is that you're not

to use any lotion or ointments under the helmet, right? but Kai has

problems with mild eczema and dry skin, I'm afraid washing his hair

everyday like they say to will cause him excessive dryness and then

pressure problems?? He wore the helmet 2 hrs this am and it's been 2

hrs since it's been off. It's still alittle pink. Our orthotist said

that it was from him sweating in it. I read in the booklet that came

with the STARband that they can drill holes in the band to relieve

moisture problems, anyone heard of that being done? I'm afraid with

summer coming on it's only going to get worse. I need to wait until

we get the second helmet and see if most of our problems are solved.

It seems that if Kai sleeps in the helmet he rolls around alot and

one day during a long nap he ended up on his stomach with pressure on

the side of the helmet in front of his ear, it shifted the helmet and

then caused the red spot high on his forehead I mentioned that's

taken days to go away, it also caused swelling around his eye, that

went away a few hours after we took it off, scare us though! We

thought that eye was smaller all the sudden, and then realized it was

swelling. Well, enough, thanks everyone for your support! ,

Kai's mom from Columbia, MO.

-- In Plagiocephaly@y..., " debbieandabby " <dj2kirby@c...> wrote:

> :

> What a bummer! I can understand you're a bit frustrated after

> waiting all this time to get the helmet & it now doesn't fit

right.

> But it's a good thing that your orthotist realized it wasn't

correct

> & is getting the problem resolved so quickly! Did they re-cast Kai

> or go from the original mold? Is it a STARband or locally made

helmet?

> Debbie Abby's mom DOCGrad

> MI

>

>

> --- In Plagiocephaly@y..., " kaneko1232002 " <kaneko1232002@y...>

wrote:

> > Hi, sorry I've been too busy to post for awhile, We finally got

> Kai's

> > helmet a week ago today after a month of waiting after he got

> casted.

> > Then after we got it we were having trouble getting it to sit

right

> > on Kai's head and having trouble with pressure spots staying too

> > long. Our orthotist decided he made a mistake and drew the

trimline

> > above his eyes too high, and the trouble we were having

positioning

> > it was because we had to try to get it positioned as low as

> possible

> > on his forehead and then it wasn't quite right elsewhere. He's

> > getting a new helmet made at no cost to us, and are supposed to

use

> > the first one as much as possible until then, but we're having

> > trouble with red areas and Kai hasn't had it on since yesterday

> > afternoon. It seems when he sleeps in it he rolls around and it

> > shifts and slides up on his forehead and gets a red spot there

that

> > is persistent. He also had swelling around one eye yesterday

after

> > taking a long nap in the helmet laying on his stomach and putting

> > pressure on the part of the helmet that is in front of his ear.

> We're

> > a little discouraged I'll admit that he hasn't been able to wear

> the

> > helmet much, seems to be such a delay in treatment. But, I

believe

> > God guided us in the first part of the process in such a way, and

> He

> > still is in control I do believe, so I'm leaving it up to Him. If

> > anyone out there prays, I'd appreciate yours, that God will

> continue

> > to work in the process. Good to be back on!! (Kai's mom)

in

> > Columbia, Mo.

[Guest guest]

Hi :

How long has it been since Kai's 1st casting? About 6 wks or so now

right? Has he grown since then? The only reason I am asking, is if

he has grown, then I would think it might be in your best interest to

have him totally re-casted for his new band.......getting a perfect

fit is key to these bands working. Kai's head could have grown

significanly since his casting, which would make a new band not fit

properly again.

You might want to try some hydrocortisone cream (Cortaid, I think) to

clear up the peeling area on his forehead. I used that on Abby's

head when she had a bit of a heat rash & it cleared it up quickly.

A lot of our members child's helmet/band has air holes drilled into

them to relieve some of the heat. Abby's STARband did (about a month

into treatment her orthotist drilled air holes in it), but for Abby,

it really didn't help her sweating.

You also mentioned about the band shifting so badly during a nap, it

caused Kai's eye to swell. That should definitely not be happening.

Bands should not shift that much - not even while a baby sleeps. My

Abby is quite a wiggle worm when she sleeps too, but neither of her

bands shifted (they shifted a little, but nothing noticeable).

I hope your next band fits better & you don't have any more troubles

with it.

Please, let us know when it's in & how it all fits. Best of luck.

Debbie Abby's mom DOCGrad

MI

> > > Hi, sorry I've been too busy to post for awhile, We finally got

> > Kai's

> > > helmet a week ago today after a month of waiting after he got

> > casted.

> > > Then after we got it we were having trouble getting it to sit

> right

> > > on Kai's head and having trouble with pressure spots staying

too

> > > long. Our orthotist decided he made a mistake and drew the

> trimline

> > > above his eyes too high, and the trouble we were having

> positioning

> > > it was because we had to try to get it positioned as low as

> > possible

> > > on his forehead and then it wasn't quite right elsewhere. He's

> > > getting a new helmet made at no cost to us, and are supposed to

> use

> > > the first one as much as possible until then, but we're having

> > > trouble with red areas and Kai hasn't had it on since yesterday

> > > afternoon. It seems when he sleeps in it he rolls around and it

> > > shifts and slides up on his forehead and gets a red spot there

> that

> > > is persistent. He also had swelling around one eye yesterday

> after

> > > taking a long nap in the helmet laying on his stomach and

putting

> > > pressure on the part of the helmet that is in front of his ear.

> > We're

> > > a little discouraged I'll admit that he hasn't been able to

wear

> > the

> > > helmet much, seems to be such a delay in treatment. But, I

> believe

> > > God guided us in the first part of the process in such a way,

and

> > He

> > > still is in control I do believe, so I'm leaving it up to Him.

If

> > > anyone out there prays, I'd appreciate yours, that God will

> > continue

> > > to work in the process. Good to be back on!! (Kai's mom)

> in

> > > Columbia, Mo.