Re: 3rd day wearing helmet!!!

[Guest guest]

Hi Krissy:

Awww, I'm soooo sorry to hear how frustrated and upset you and your

husband are right now. Let me try to answer your questiosn below.

Do you have any pics of in his band that you could post for us

to take a look at? It sounds like it might be a bit overly big?

Have you looked at the other STARband pics we have in our folders

that might show you what the band " should " fit and look like? Like

Jenna's folder, Aidan K's folder are a couple that come to mind

right now.

> 1- We cannot believe how big the helmet is. looks so

different. The helmet squishes

> his cheeks and covers half of his face. We miss his big smiles and

feel the helmet stops the

> big expressions he makes

From your description, it doesn't sound as if it fits properly.

Have you addressed these issues wth your orthotist? Is your ortho

experienced w/the STARband?

>

> 2- Taking this helmet on and off takes a lot of strength! Boy it

is like opening up a clam

> shell. I pray it will never slip because it could cause some

damage.

Nope, should be difficult to take it on and off. I'm really

concerned about this. It should be relatively simple. I know my

daughter's STARband was much more difficult to put on & off vs her

DOCband was. But it still wasn't " that' difficult.

>

> 3- -has been VERY needy- especially today. He just wants to

be held ALL the time. I

> hold him to the point my arms need a break. He doesn't seem to be

happy with it at all

> today. I pooped him out by putting him on his tummy for a while

with the help of a boppy.

> The helmet is very big and clunky. He seemed to hate his tummy

more than ever. Before

> the helmet, he was just learning on pulling himself up and trying

to move forward.

Is the band leaving any bad red spots that don't completely fade w/i

one hr after removal? It sounds like a poor fit

> 4- He has not slept with the helmet on over night yet, he has

fallin' asleep with it on in the

> carseat. I just don't feel comfortable with this contraption on

while he sleeps. Has anyone

> had any bad experiences?

Some babies take a bit longer to adjust wearing their bands, esp at

bedtime. But again, the fit dosen't sound at all right from your

descriptions, so I'd strongly encourage you to go to your orthotist!!

>

> 5- He is sweating a lot. Especially when we take it off the

perspiration is dripping around

> were his head was covered. Living in FLorida we are trapped in the

house or air

> conditioned places. I am so afraid of him overheating.

We have lots of FL members, are you the same mom who met Lori &

Christian from our board at your clinic? If not, where are you going?

Sweating is very common & typical in the first week or so of

banded. Once the body temp adjusts to this thing on top their head,

it diminishes greatly, although, he'll still likely sweat, just not

as much.

>

> 6- He goes in for a fitting tomorrow. We find the left cheek is

being smooshed in too

> much and there is too muuch coverage around his right ear. The

red spots seem to go

> away within the hour. he has worn it 4 hours on and 1 hour off

yesterday. Today he has

> just worn it for 2 hours and needed another nap. I think we are

both pooped and need a

> break.

If it's not " right " in your opinion, I'd say keep it off til

tomorrow's appt. If it's not properly fitted, it can do more harm

than good. So sometimes it's better to be safe! Please, discuss all

this w/your orthotist!!!!

> Does this helmet ever cause neck problems? or any nerve damage

around the ears? know

> to look for the eye muscle problems- but I don't know about the

neck and ears.

Never heard of it causing any ill effects.

>

> How long does it take to see any change?

Depends on the baby's age, severity & growth. How old is ? I'd

say after a couple wks you should see noticeable correction.

>

> Is there anyone out there that doesn't do the 23 hour therapy?

Maybe more breaks? Isn't

> there anything better than this?

It is very important to keep it on the full time (as long as it's

fitting properly!!!!!). I know it seems like a lot right now, but

once it's on & is fitting well, you'll honestly forget about it,

believe it or not!!! I too felt how you are feeling, but it does get

better.

Please keep us posted. I hope things get better, the first week or 2

are the worst and most frustrating!!

Debbie

[Guest guest]

Hi Krissy,

Please don't get depressed. I'll respond to your specific

statements below (in caps) but I'VE been gone a lot lately, what

type of band is he wearing? How old is he?

Natasha

--- In Plagiocephaly , " jkdcook " <krissycook@m...>

wrote:

>

> 1- We cannot believe how big the helmet is. looks so

different. The helmet squishes

> his cheeks and covers half of his face. We miss his big smiles and

feel the helmet stops the

> big expressions he makes

HIS CHEEKS SHOULDN'T BE COVERED, CAN YOU POST A PICTURE OF HIM WITH

IT ON??

>

>

> 4- He has not slept with the helmet on over night yet, he has

fallin' asleep with it on in the

> carseat. I just don't feel comfortable with this contraption on

while he sleeps. Has anyone

> had any bad experiences?

HE NEEDS TO WEAR IT WHILE SLEEPING, THAT IS VERY IMPORTANT BECAUSE

CHILDREN GROW THE MOST WHILE SLEEPING. IF THE HELMET FITS WELL IT

SHOULD NOT (HOPEFULLY) AFFECT HIS SLEEPING HABITS.

>

> 5- He is sweating a lot. Especially when we take it off the

perspiration is dripping around

> were his head was covered. Living in FLorida we are trapped in the

house or air

> conditioned places. I am so afraid of him overheating.

HE WILL PROBABLY ADJUST TO THAT SOMEWHAT. JUST TAKE IT OFF

PERIODICALLY AND WIPE HIS HEAD WITH A CLEAN CLOTH.

>

>> Does this helmet ever cause neck problems? or any nerve damage

around the ears? know

> to look for the eye muscle problems- but I don't know about the

neck and ears.

I'VE NEVER HEARD OF THE HELMET AFFECTING THE NECK OR EARS BESIDES

MAYBE IRRITATING THE SKIN SOMEWHAT.

>

> How long does it take to see any change?

YOU SHOULD SEE A CHANGE IN 2-3 WEEKS HOPEFULLY.

>

> Is there anyone out there that doesn't do the 23 hour therapy?

Maybe more breaks? Isn't

> there anything better than this?

23 HOURS IS VERY IMPORTANT, YOU NEVER KNOW WHEN THEY WILL HAVE A

GROWTH SPURT. KEEP YOUR CHIN UP, WE ARE ALL HERE FOR YOU!

>

> When does it get better!!!

> Thanks for listening to my venting. A very depressed mom and

family,

> Krissy

> mother of ph

[Guest guest]

> > 2- Taking this helmet on and off takes a lot of strength! Boy it

> is like opening up a clam

> > shell. I pray it will never slip because it could cause some

> damage.

>

> Nope, should be difficult to take it on and off. I'm really

> concerned about this. It should be relatively simple. I know my

> daughter's STARband was much more difficult to put on & off vs her

> DOCband was. But it still wasn't " that' difficult.

>

CORRECTION!! Typo, it should NOT be difficult to take on & off!

Should be relatively easy! Sorry.

Debbie

[Guest guest]

Hi Krissy,

I am sooooo sorry that the start of this treatment has been so

difficult for you. I see that Debbie posted answers for each of your

issues, but I just wanted to let you know that I agree wit her. It

sounds like the band might need an adjustment or 3! I can tell you

that our first few days in Aidan's band were difficult at best,

making multiple trips to the orthotist's office for adjustments. I

was ready to chuck the whole thing at day 5, but it did get better.

You do get used to seeing them in the bands/helmets after a while

that they look " funny " without them. I felt (after the first week)

that it really framed his face and emphasized my son's eyes and

adorable face!

The band should not hinder his movement at all. My son wore his from

6 3/4 months to 12 months. He learned to sit, crawl, and walk with

it on. My son HATED tummy time so much that I could not tell you if

it made it worse, that would be impossible to tell. After 30

seconds, he would scream, STARband or not!

Please make sure that the band fits properly and don't hesitate to

call the office often and have unscheduled adjustments if needed.

Hugs!!!!!

- mom to Aidan

STARgrad 02/04

GR Mi

--- In Plagiocephaly , " jkdcook " <krissycook@m...>

wrote:

> Well-

>

> Hi Everyone. finally got his helmet Starband on Friday and it

has taken me today to

> finally write. It has been very emotional and to tell you the truth

my husband and I hate it.

>

> 1- We cannot believe how big the helmet is. looks so

different. The helmet squishes

> his cheeks and covers half of his face. We miss his big smiles and

feel the helmet stops the

> big expressions he makes

>

> 2- Taking this helmet on and off takes a lot of strength! Boy it is

like opening up a clam

> shell. I pray it will never slip because it could cause some

damage.

>

> 3- -has been VERY needy- especially today. He just wants to be

held ALL the time. I

> hold him to the point my arms need a break. He doesn't seem to be

happy with it at all

> today. I pooped him out by putting him on his tummy for a while

with the help of a boppy.

> The helmet is very big and clunky. He seemed to hate his tummy more

than ever. Before

> the helmet, he was just learning on pulling himself up and trying

to move forward. He

> really hasn't been on his stomach much at all since Thursday (since

the band was on

> Friday). But, I feel we are back to square one and getting him to

stay on his stomach for

> more than a couple of minutes at a clip.

>

> 4- He has not slept with the helmet on over night yet, he has

fallin' asleep with it on in the

> carseat. I just don't feel comfortable with this contraption on

while he sleeps. Has anyone

> had any bad experiences?

>

> 5- He is sweating a lot. Especially when we take it off the

perspiration is dripping around

> were his head was covered. Living in FLorida we are trapped in the

house or air

> conditioned places. I am so afraid of him overheating.

>

> 6- He goes in for a fitting tomorrow. We find the left cheek is

being smooshed in too

> much and there is too muuch coverage around his right ear. The red

spots seem to go

> away within the hour. he has worn it 4 hours on and 1 hour off

yesterday. Today he has

> just worn it for 2 hours and needed another nap. I think we are

both pooped and need a

> break.

>

>

> Some questions-

>

> Does this helmet ever cause neck problems? or any nerve damage

around the ears? know

> to look for the eye muscle problems- but I don't know about the

neck and ears.

>

> How long does it take to see any change?

>

> Is there anyone out there that doesn't do the 23 hour therapy?

Maybe more breaks? Isn't

> there anything better than this?

>

> When does it get better!!!

> Thanks for listening to my venting. A very depressed mom and family,

> Krissy

> mother of ph