RE: [SPAM]Re: [SPAM]Re: My son's helmet is loose...

[Guest guest]

Thanks for sharing your story. It’s a shame that you

had to go through two band bands before getting one that works well. It

just goes to show that the experience of the ortho is key; we had a great

experience with our STARband but I hear so many stories of people that didn’t

have a great experience.

Molly

Novato, California

Nicolas, 2.5, tort & plagio, STARband (CIRS Oakland)

4/24/06-9/12/06, Graduate!

, 5

, 8.5

From: Plagiocephaly

[mailto:Plagiocephaly ] On Behalf Of Heidrun Benbrook

Sent: 26 June 2008 08:43

Plagiocephaly

Subject: [sPAM]Re: [sPAM]Re: My son's helmet is loose...

Hi Molly:

Sorry about the mix up of names. Yes it was the Starband from Children's

Hospital in St. Louis that we had.

There were 3 Orthodists that we saw alternately, so it is hard so say who was

good, who was bad. That in itself is not a good thing - I believe a baby

needs to stay with the same orthodist throughout the entire process. I

started to have bad vibes while Aiden still wore his first band and all of a

sudden all improvement stopped. One orthodist's reply to my question of

why he was not showing improvement was: Well, he is past the big growth

spurt that occurs at 4-5 months of age. Well, how can the circumference

of the head keep on growing and no correction to the head shape be made?.

Since Aiden was an extremely severe case the clinician agreed to go for a second

band. Now that one was a total disaster. First it smooshed,

pinched, then a lot of foam was shaved out, then it rotated, then padding was

added in. It was an absolute nightmare. Since then I have

learned from posts to this group that the 'first

cut' is so important. I guess that is what went wrong with

the second helmet. Well, it was so loose fitting that Aiden

was able to simply pull it off his head without even opening the Velcro

first. He absolutely hated it and who can blame him - it must have

been torturous. This so called graduation from his helmet was in early

January. We thought to maybe keep the helmet on him for another couple of

weeks, but, as I said, he simply pulled it off as soon as it was put on him.

So, subsequently every time I saw him I would touch his little head and just

kept thinking this just can't be it, there has to be some better correction for

this poor baby. Chicago is the closest DOC location for us. So, we

went for it and have not regretted it one bit. Not perfect but lots of

improvement and about 6 weeks to go.

I wish we could just parade him into the local Starband office and say, hey

this is what CAN be done.

Moral of the story: question everything, take pictures, you are your

child's best and truly only advocate.

Good luck to everyone,

Heidrun

Aiden's proud Grandma

On Thu, Jun 26, 2008 at 10:09 AM, Foley, Molly <mafoley@...> wrote:

Actually it is

who has a band from Orthotic and Prosthetic Lab in Missouri. On their

website it looks like the use the STARband.

What kind of poor

fitting band did you have? Did you get it directly from Children's

Hospital?

Molly

Novato, California

Nicolas, 2.5, tort & plagio, STARband (CIRS Oakland) 4/24/06-9/12/06,

Graduate!

, 5

, 8.5

From: Plagiocephaly

[mailto:Plagiocephaly ]

On Behalf Of Heidrun Benbrook

Sent: 26 June 2008 05:01

Plagiocephaly

Subject: [sPAM]Re: My son's helmet is loose...

Hi Molly:

Are you by chance going to Children's Hospital in St. Louis? That is

where we took my grandson and, in all fairness he did get some good correction

with his first band. The second band however was a disaster. Tons

of appointments to try to keep it from literally spinning on his head, smooshing

his ears and so loose fitting that he would

simply pull it off his head. It was a really bad experience

with 'graduation' when he was far from being

corrected. We ended up going for the DOC band in

Chicago (Western Suburbs) and are extremely pleased with the

result. Will he ever be 100% - no, but at the lateness in the

game we did not expect that. We are seeing great results

and he is due to 'graduate' the middle of August.

The way is head is shaping up he will not stand out in a crowd anymore.

With all of this banding the poor baby has been in a helmet since the end of

May of last year with January, February, March and half of April

off. This band (DOC) he does not even mind having

on, actually he will try to put it back on himself after

costume changes.

Please feel free to contact me personally, it sounds like you are going to the

same place we did with Aiden.

Good luck,

Heidrun

Aiden's proud Grandma

On Thu, Jun 26, 2008 at 12:46 AM, ginabsweet101

<ginabsweet101@...>

wrote:

Hi Molly,

I got the helmet from a place called Orthotic and Prostetic Lab. in

Missouri. I have an appt. tomorrow morning and feel like I'm gonna

have to put my foot down and truly express my concerns, hopefully she

will make a new helmet at no extra charge. Can they charge me for a

new one?

Thanks for your advice..

gina

>

> It definitely sounds like you have a poor fitting band. I would

speak with

> the boss and demand that a new helmet be made. I would especially

be

> concerned with the chin strap as that can be a choking hazard,

especially if

> your son is able to pull the band off.

>

> What kind of helmet do you have? Where did you get it from?

>

> Molly

> Novato, California

> Nicolas, 2.5, tort & plagio, STARband (CIRS Oakland) 4/24/06-

9/12/06,

> Graduate!

> , 5

> , 8.5

>

> My son's helmet is loose...

>

> My son received his helmet the day he turned 8 months. Ever since,

I

> noticed the helmet was kind of loose. I assumed this was normal.

I

> went to my one month appt., and spoke to the orthotic and prostetic

> lady that fitted him, I expressed my concerns towards the looseness

> of the helmet, and she simply took the helmet back to her shop area

> and for some reason added extra foam on the inside. I once again

> assumed she knew what she was doing, so I took my baby home and

after

> setting him down to play, noticed that the helmet was even looser

on

> his head. To the point that it was rotating clockwise on his head,

> also when he rolled over, the helmet would move up on his head and

> cover his eyes. I quickly called the ortho lady and she had me

bring

> him in the next day. Once again she took the helmet back to the

shop

> and made some changes and provided me with a chin strap. I told

her

> that I was beginning to think there was a problem with the helmet

and

> that perhaps it wasn't properly fitted. Assuming she knew what she

> was talking about, I took my baby home with his helmet and chin

> strap, and sure enough he pulled it righ off. I decided to see if

> the changes she made to the helmet had made a difference, but still

> found the helmet to bee quite loose. Am I overreacting or should I

> ask her to let me speak to her boss. I am so frustrated... today

> Lincoln pulled the helmet right off his head for the first time,

with

> the velcro still perfectly sealed. I'm worried that he's not

getting

> the full benefit of the treatment, and fear that this precious time

> we have during his skulls growth is slowly fading. All the other

> children I have seen with helmets, wear their helmets nice and

snug;

> please help...

>

>

> ------------------------------------

>

> For more plagio info