Re: NEW TO GROUP: Desperate for advice! Feeling so helpless!

[Guest guest]

Well, you can forget about driving to Vermont. We got a STARband in

Lebanon, New Hampshire, but that didn't go well. Hearsay locates my

nearest competent clinician in Manchester, NH; I have another good

contact in Burlington who wasn't doing helmets at the time, but was

considering expanding her practice, if you should need to explore

your options that deeply. More comments below:

On Feb 12, 2011, at 9:29 AM, virginied28 wrote:

> Hi all:

>

> I recently joined this forum and as my 6 month old, Raphael, has

> severe brachycephaly with mild plagio (I figured it must be quite

> severe with a Cephalic index of 99.25% on one side and 97% on the

> other side). I am located in Montreal, Quebec in Canada. I have

> read most of the messages on the forum and would like to obtain

> your advice.

I thought there was only one Cephalic Index. Width/length.

> We just got our helmet yesterday. It was made at the clinic in

> Montreal, but once I saw it, it really look like a Hanger band, so

> I figure they must get the helmets from them.

STARband and Hanger are also very similar; you should ask. There are

orthotists at the STARband manufacturer to complain to, and sometimes

they remake helmets for free. We got one, but they won't take any

claim of poor fit seriously for at least two weeks. See Parents FAQ

at orthomerica.com.

> I was not pleased with our visit. The orthosist was 1.15 hr.

> late. Did not provide any reason or did not apologize. Here are

> my concerns:

What I've heard about the Canadian medical system in general is not

good. I know a mother of twins that they didn't even test for

homozygosity. They're obviously identical, but thanks to incompetent

medial advice, she is adamant that they're not. So yeah, it's a good

bet that your kid really needs the treatment.

> -the helmet has a piece of strip of material between the opening

> (scratch side);

That's normal for STARband.

> -there was a huge gap behind the right ear, so I insisted to have

> it symmetrical. They added a piece of material also.

Until the head grows a bit, you aren't going to be able to tell how

well the helmet really fits. It is normal for the helmet to rattle

around and rotate for two weeks. Eventually, the aim is to have full

contact on the parts of the skull that stick out the most. Ideally,

those areas will be pink when the helmet is taken off daily, but it's

not assured. (If the color doesn't go away in the off hour, it's too

tight.)

If a helmet doesn't fit to such a degree that it needs to be remade,

the pressure spots MAY appear in the wrong place, and the orientation

MAY become firmly fixed in a rotated position, pushing on the ear

constantly; OR, the sneaky orthotist may just keep shaving out the

lining so that it's too big and doesn't make contact at all.

So if your fears are confirmed, the red flag goes up around two

weeks, you contact Orthomerica (if it's a STARband) and then I think

you have to give it another couple weeks before making the decision

to give up on your clinician or stick with them and have it remade.

> -when I place the helmet in front of me, i notice that the back of

> the neck/nape area is not centered. I would not want this to

> deform my son's neck.

An active helmet for brachycephaly helmet would be symmetrical, and a

passive helmet for plagiocephaly would be also. You're right, at

this stage asymmetry is somewhat counterproductive, giving you

essentially a passive helmet in the wrong shape -- too loose; but as

the skull grows, asymmetry allows more productive contact with the

asymmetrical head. The interior space becomes more symmetrical as

the skull grows, and adjustments are made to the lining. That's the

only real " activity " of this type of helmet versus the older,

passive, thin plastic shell style.

You CAN get STARbands and presumably Hanger bands made in symmetrical

form also, and let them fall where they may on the misshapen head; in

that case, they would be considered " passive " also. Which is an

option to consider, if you should decide that your clinician is

basically incompetent to make the skilled adjustments that the active

helmet requires.

> When I look at the helmet, it just looks like it was " patched up "

> to correct misconception in the first place.

>

> I have also heard that brachy is almost impossible to correct with

> a passive device. The problem is that I don't know if our helmet

> is active or passive. I will post pictures on the forum for you to

> see and would highly appreciate any advice. Look for plagio baby R

> under Raphael.

If your clinician ever refers to this type of helmet as passive, it's

a good bet that he is not aiming to acheive the necessary degree of

contact -- regardless of the manufacturer's marketing info.

> I am so sad my son cannot get the DOC band as it is not available

> in Canada and would have me flying to Connecticut or Chicago for

> every appointment.

Cranial Technologies adjusts their device more frequently, and the

helmet fits more closely, which is great on this end of the

treatment. Puts the fix on the head right away, when it will be most

effective. But, their thin foam shortens the treatment time. Not

necessarily a good thing, when brachycephaly is the primary concern.

There are parents on here who bought three DOC bands for brachy.

Great, if you can swing it...

> I don't know what to do. Should I look for another clinic or

> should I take my helmet elsewhere to get a second advice.

I'm sure you'll have better bearings in a month. Meanwhile, look out

for heat rash, /miliaria rubra/, on the face. It seems to strike

very often on the fifth day. Maybe get some hydrocortisone cream

now, so you have it handy before the skin actually breaks down. It

takes a certain period of full-time wear before the skin adjusts.

> Thanks for your input.

You're very welcome.

--

Thad Launderville

town, VT

Clara age 2 1/2, STARband '10

[Guest guest]

On Feb 12, 2011, at 3:47 PM, Thad Launderville wrote:

> Until the head grows a bit, you aren't going to be able to tell how

> well the helmet really fits. It is normal for the helmet to rattle

> around and rotate for two weeks.

I rescind this statement and assure the original poster: that helmet

fits awesomely. (Looked at pictures.)

[Guest guest]

I am no professional, but something doesn't sound right about the helmet you received. If you have doubts, please seek a second opinion. You are the only one who will be an advocate for your son so speak up. No sense in wasting your hard earned money and risking any discomfort and possibly worsening the cranial shape. Good luck.

> Plagiocephaly > From: virginie.dandurand@...> Date: Sat, 12 Feb 2011 14:29:49 +0000> Subject: NEW TO GROUP: Desperate for advice! Feeling so helpless!> > Hi all:> > I recently joined this forum and as my 6 month old, Raphael, has severe brachycephaly with mild plagio (I figured it must be quite severe with a Cephalic index of 99.25% on one side and 97% on the other side). I am located in Montreal, Quebec in Canada. I have read most of the messages on the forum and would like to obtain your advice.> > We just got our helmet yesterday. It was made at the clinic in Montreal, but once I saw it, it really look like a Hanger band, so I figure they must get the helmets from them.> > I was not pleased with our visit. The orthosist was 1.15 hr. late. Did not provide any reason or did not apologize. Here are my concerns:> > -the helmet has a piece of strip of material between the opening (scratch side);> > -there was a huge gap behind the right ear, so I insisted to have it symmetrical. They added a piece of material also.> > -when I place the helmet in front of me, i notice that the back of the neck/nape area is not centered. I would not want this to deform my son's neck.> > When I look at the helmet, it just looks like it was "patched up" to correct misconception in the first place.> > I have also heard that brachy is almost impossible to correct with a passive device. The problem is that I don't know if our helmet is active or passive. I will post pictures on the forum for you to see and would highly appreciate any advice. Look for plagio baby R under Raphael.> > I am so sad my son cannot get the DOC band as it is not available in Canada and would have me flying to Connecticut or Chicago for every appointment.> > I don't know what to do. Should I look for another clinic or should I take my helmet elsewhere to get a second advice.> > Thanks for your input.> > > > ------------------------------------> > For more plagio info