Re: Measurement questions

October 17, 2010

Hi,

I don't know about the docband, but our Starband ortho had told us

not to shave the head. While getting scans, we kept our son's hair

very short. That way the scans were more accurate and we could see

his head. It might be a good idea to cut your son's hair very short

so that you can see his head better. This would only be temporary,

and the head is permanent. I'm pretty sure it was my older son's

hair that got us into trouble! He had what was probably mild

plagio, and then he grew hair and we thought he looked fine. We had

no idea he still had very mild plagio, and now with his shorter

haircut I see it. Further since we falsely thought our older son's

head had rounded out, we thought our younger son's head would round

out too and we paid little attention as he developed mild/moderate

plagio until we realized it still looked bad at almost a year.

Sorry, I don't know much about your measurement questions, except I

trust scans more than CT hand measurements. Hopefully, you got more

than 1mm of improvement, otherwise I would wonder about your helmet

fit. I would ask yourself whether his head looks improved.

Best,

Kathy

On 10/17/2010 2:38 PM, Gidwani wrote:

Ok, after seeing all of these

"measurement" emails, I'm very

discouraged. I had a post out earlier

about trying to make a decision

about banding or not a second time for

my son who is 10 months old (thanks

for all of the responses) and I was

discussing how Cranial Technologies is

recommending we band my son for a

second time because he is now in the

mild/moderate category...he started

off in the moderate to severe

category.

When we started this process, it

was fast and I went in trusting that

we were with the right provider (CT)

and didn't really ask too much about

measurements and they never discussed

them...I guess I didn't do enough

research before (shame on me). But,

after reading all of these recent

posts about measurements, I called our

tech and she said that my son has only

gone from 15 mm - 14 mm. But, she

assured me that these are linear

measurements and it's a 3D head so I

shouldn't put too much stock into

these numbers and sometimes it's 2

different people who take the

measurements, so it could be off a

little. But, the more I'm reading

these posts, he's so far from "normal"

now I'm thinking I have no choice but

to band again. His head does look

good when his hair is dry and when

it's wet, it's questionable, but I

have to look at a very specific angle

to see it that way. Insurance does

not cover either band.

So, how much stock should I be

putting into these numbers??? And,

the tech told me that the most

significant change in his head shape

would have been with this first helmet

(he has 2 weeks to go), so if his

asymmetry only changed 1 mm in almost

4 months and that was the most

"significant", then what is a second

helmet really going to do??? Also, a

friend of mine suggested shaving his

head (he has a lot of hair) in order

to see what it really looks like...has

anyone ever done that? I thought it

was crazy at first, but maybe it's the

only way I can truly see what his head

looks like.

Thank you for any advice.

October 17, 2010

We ended up going with Hanger but I also checked out CT and StarBand. CT never discussed anything with me either and I never asked until I called them back after I check out Hanger and StarBand. Anyway, StarBand said the "normal" range is 5mm and under and Hanger said 6mm and under so 14mm is definitely still pretty high. I would probably band again if I were you. My son started at 6 1/2 months at 13mm and at 10 months when we ended the band he was at 6mm. He grew out of the band and Hanger said we could get another band but doubtful we'd see a lot more change due to him slowing in growth. I'm ok with his head as no one would ever see anything but I think as moms we see it more than anyone else does. Go with your gut or go back and talk with your tech more. I personally would like to see even

better results but I just don't want to go through the band for another 4 months and see only 1-2mm in change plus insurance doesn't cover it for us.

Good luck!

From: Gidwani <jennifergidwani@...>Subject: Measurement questionsplagiocephaly Date: Sunday, October 17, 2010, 5:38 PM

Ok, after seeing all of these "measurement" emails, I'm very discouraged. I had a post out earlier about trying to make a decision about banding or not a second time for my son who is 10 months old (thanks for all of the responses) and I was discussing how Cranial Technologies is recommending we band my son for a second time because he is now in the mild/moderate category...he started off in the moderate to severe category.

When we started this process, it was fast and I went in trusting that we were with the right provider (CT) and didn't really ask too much about measurements and they never discussed them...I guess I didn't do enough research before (shame on me). But, after reading all of these recent posts about measurements, I called our tech and she said that my son has only gone from 15 mm - 14 mm. But, she assured me that these are linear measurements and it's a 3D head so I shouldn't put too much stock into these numbers and sometimes it's 2 different people who take the measurements, so it could be off a little. But, the more I'm reading these posts, he's so far from "normal" now I'm thinking I have no choice but to band again. His head does look good when his hair is dry and when it's wet, it's questionable, but I have to look at a very specific angle to see it that way. Insurance does not

cover either band.

So, how much stock should I be putting into these numbers??? And, the tech told me that the most significant change in his head shape would have been with this first helmet (he has 2 weeks to go), so if his asymmetry only changed 1 mm in almost 4 months and that was the most "significant", then what is a second helmet really going to do??? Also, a friend of mine suggested shaving his head (he has a lot of hair) in order to see what it really looks like...has anyone ever done that? I thought it was crazy at first, but maybe it's the only way I can truly see what his head looks like. Thank you for any advice.

October 17, 2010

This is a pretty sharp article, in my opinion, with a couple passages

(page 286, column 1, paragraph 3; page 291,column 2, paragraph 1)

characterizing the difficulties of obtaining reliable hand

measurements and severity assessment.

http://thejns.org/doi/pdf/10.3171/2009.1.PEDS08330

Incidentally contains the best explanations I've ever read of why

doctors mistrust the big orthotics companies... you can almost taste

the sour grapes! Bear in mind, Cranial Tech has done much to

vindicate itself since this was written, by developing the best

scanning tool available to overcome said assessment difficulties.

And in mundane, non-researcher doctor's offices, the situation is

much worse than described. Neither of the primary care physicians

who I've dragged through the process of measuring Clara's head even

had calipers. They just went through some pointless motions with

measuring tape -- if it's good enough for the insurance company, it's

good enough for your kid, right?

--

Thad Launderville

town, VT

Clara age 2, STARband '10

October 17, 2010

My son has been having red marks and chaffing from his helmet so we took it off and are waiting to hear back from the helmet office on Monday. The CST therapist we see told us that the movement we have been getting from our weekly apts may have accelerated the change in his head shape. I just had my husband trim my son's hair, so maybe when we go in to have the helmet refitted we will get a more accurate scan.

The best advice I can give you is to do everything in your power to try to get the head shape right while you can. It is better to deal with it all now then to play the "what if" game later on in your child's life. Have you looked into the alternative treatments? I think it may be worth it to try, especially if you are not really confident with the results you have gotten with the helmets.

NCR is supposed to work really well on babies under 2 years old.

Estrella Moeller

From: Carr <julieccarr@...>Plagiocephaly Sent: Sun, October 17, 2010 5:07:19 PMSubject: Re: Measurement questions

We ended up going with Hanger but I also checked out CT and StarBand. CT never discussed anything with me either and I never asked until I called them back after I check out Hanger and StarBand. Anyway, StarBand said the "normal" range is 5mm and under and Hanger said 6mm and under so 14mm is definitely still pretty high. I would probably band again if I were you. My son started at 6 1/2 months at 13mm and at 10 months when we ended the band he was at 6mm. He grew out of the band and Hanger said we could get another band but doubtful we'd see a lot more change due to him slowing in growth. I'm ok with his head as no one would ever see anything but I think as moms we see it more than anyone else does. Go with your gut or go back and talk with your tech more. I personally would like to see even better results but I just don't want to go through the band for another 4 months and see only

1-2mm in change plus insurance doesn't cover it for us.

Good luck!

From: Gidwani <jennifergidwani@...>Subject: Measurement questionsplagiocephaly Date: Sunday, October 17, 2010, 5:38 PM

Ok, after seeing all of these "measurement" emails, I'm very discouraged. I had a post out earlier about trying to make a decision about banding or not a second time for my son who is 10 months old (thanks for all of the responses) and I was discussing how Cranial Technologies is recommending we band my son for a second time because he is now in the mild/moderate category...he started off in the moderate to severe category.

When we started this process, it was fast and I went in trusting that we were with the right provider (CT) and didn't really ask too much about measurements and they never discussed them...I guess I didn't do enough research before (shame on me). But, after reading all of these recent posts about measurements, I called our tech and she said that my son has only gone from 15 mm - 14 mm. But, she assured me that these are linear measurements and it's a 3D head so I shouldn't put too much stock into these numbers and sometimes it's 2 different people who take the measurements, so it could be off a little. But, the more I'm reading these posts, he's so far from "normal" now I'm thinking I have no choice but to band again. His head does look good when his hair is dry and when it's wet, it's questionable, but I have to look at a very specific angle to see it that way. Insurance does not

cover either band.

So, how much stock should I be putting into these numbers??? And, the tech told me that the most significant change in his head shape would have been with this first helmet (he has 2 weeks to go), so if his asymmetry only changed 1 mm in almost 4 months and that was the most "significant", then what is a second helmet really going to do??? Also, a friend of mine suggested shaving his head (he has a lot of hair) in order to see what it really looks like...has anyone ever done that? I thought it was crazy at first, but maybe it's the only way I can truly see what his head looks like. Thank you for any advice.

October 18, 2010

Thad,Thanks for posting the article--very interesting read. Our ped didn't even really examine my daughter's head, much less even try to measure it. She sent us to a neurosurgeon at my insistence after the PT brought up the helmet issue. It's really unfortunate that many peds are uneducated and/or unconcerned about deformational plagio.-AmyFrom: Thad Launderville <p38thadl@...>To:

Plagiocephaly Sent: Mon, October 18, 2010 1:20:21 AMSubject: Re: Measurement questions