Re: P.'s appt. w/ Neuro yesterday... long post

[Guest guest]

Kel, I applaud your efforts of repo. I would like to agree with

your statement of " But at least I can say I tried everything I

could " Very true! There has to come a time when you have to give

up on the repo efforts because of age, etc. and decide to band or

not. Good Luck!

Dustie

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

wrote:

> Hi everyone,

>

> We had our follow up appointment with the Neuro yesterday along

with

> a follow up scan of 's head. The orthotics department uses the

> STARscanner. It showed that his cephalic index is currently 95.1

> (only slightly better than the 95.9 he measured 6 weeks ago).

> Fortunately, when comparing the two scans, the change was most

> significant at the back of his head (he's brachy). He didn't grow

> wider at the ears or change at all in the front. According to the

> tech, she felt his case is " moderate " .

>

> Now to the Neuro's office...He looked at the scan and remarked

that

> there had been no significant change, and asked us our opinion on

> 's progress, scan aside. Both my husband and I agree that he

> looks much improved since we began repo'ing him last November. The

> Neruo said that on a scale of 1 to 10 (10 being most severe), he

> would classify between a 1 and 2 " extremely mild " . He

> absolutely doesn't feel that we should helmet . He also

doesn't

> think that aggressive repositioning will benefit his headshape at

> this point since the bones have already started to harden.

> Basically, he said 's head is " perfect " and not to worry. My

> husband beamed and did an " I told you so " to me. (He has been

> reluctantly supportive of my repo efforts. His position that

's

> headshape is " not that bad " was apparently justified by the

Neuro's

> evaluation.)

>

> Here are my issues with the visit....

> 1. How can the tech say moderate and the Neruo say extremely mild?

>

> 2. Did the scan truly capture an accurate Cephalic Index

> measurement? He was lying flat on his head while they scanned.

>

> 3. Stop aggressive repo??? I just flat out don't agree with that.

>

> What I plan to do....

> Keep repo'ing as I have been. I'm in agreement that most

likely

> doesn't need a helmet. I think he has made progress and will

> continue to do so with my intervention (regardless of what the

Neuro

> says). But, with that said, if in two months I feel he hasn't made

> enough progress with my repo efforts, I plan to go with a helmet.

> Yes, he will be older than most, and probably will have to wear it

> longer, but at least I will be able to say I tried everything

while

> I had the opportunity.

>

> Thanks for listening,

>

> Kel (currently repo'ing 7 month old )

[Guest guest]

Kel,

The first " specialist " I took my baby too told me her head was

perfect too. I about fell over, she had misaligned ears and an

asymmetric face. The second one I took her to told me that yes she

has mild/moderate plagio with facial asymmetry but a helmet wouldn't

help her. I was so upset, I was at a loss about what to do. I ended

up taking her for a free eval at Cranail Tech. The ortho said she had

moderated plagio and would benefit from a band. We banded and are so

happy we did she received excellent correction.

I do agree with your specialist about repoing not being very

beneficial at this age. If you do plan on banding, I say do it now.

The younger a baby is banded the better and faster the correction. If

you wait 2 months will most likely be banded for the whole

summer. JMO

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

wrote:

> Hi everyone,

>

> We had our follow up appointment with the Neuro yesterday along

with

> a follow up scan of 's head. The orthotics department uses the

> STARscanner. It showed that his cephalic index is currently 95.1

> (only slightly better than the 95.9 he measured 6 weeks ago).

> Fortunately, when comparing the two scans, the change was most

> significant at the back of his head (he's brachy). He didn't grow

> wider at the ears or change at all in the front. According to the

> tech, she felt his case is " moderate " .

>

> Now to the Neuro's office...He looked at the scan and remarked that

> there had been no significant change, and asked us our opinion on

> 's progress, scan aside. Both my husband and I agree that he

> looks much improved since we began repo'ing him last November. The

> Neruo said that on a scale of 1 to 10 (10 being most severe), he

> would classify between a 1 and 2 " extremely mild " . He

> absolutely doesn't feel that we should helmet . He also doesn't

> think that aggressive repositioning will benefit his headshape at

> this point since the bones have already started to harden.

> Basically, he said 's head is " perfect " and not to worry. My

> husband beamed and did an " I told you so " to me. (He has been

> reluctantly supportive of my repo efforts. His position that 's

> headshape is " not that bad " was apparently justified by the Neuro's

> evaluation.)

>

> Here are my issues with the visit....

> 1. How can the tech say moderate and the Neruo say extremely mild?

>

> 2. Did the scan truly capture an accurate Cephalic Index

> measurement? He was lying flat on his head while they scanned.

>

> 3. Stop aggressive repo??? I just flat out don't agree with that.

>

> What I plan to do....

> Keep repo'ing as I have been. I'm in agreement that most

likely

> doesn't need a helmet. I think he has made progress and will

> continue to do so with my intervention (regardless of what the

Neuro

> says). But, with that said, if in two months I feel he hasn't made

> enough progress with my repo efforts, I plan to go with a helmet.

> Yes, he will be older than most, and probably will have to wear it

> longer, but at least I will be able to say I tried everything while

> I had the opportunity.

>

> Thanks for listening,

>

> Kel (currently repo'ing 7 month old )

[Guest guest]

Kel,

First of all, congratulations on seeing continuing improvement from

repo. You're right, it's significant that no additional widening,

nor forehead bossing, occurred during the last 6 weeks... excellent

job keeping pressure off of the back of 's head!

In answer to your questions about the disparity between the ortho's

opinion, and the neuro's, I can give you my impressions. I agree

with the ortho that that cepahlic index is " moderate " brachy.

Insurance companies certainly aren't jumping at the bit to cover

cranial orthoses, but Aetna provides some info on average cephalic

ratio, and standard deviations off the average required for

coverage. Their guidelines are in the LINKS/INSURANCE SECTION, but

here is the info:

Sex Age -2SD -1SD Mean +1SD +2SD

Male 6-12mo 64.8 71.4 78.0 84.6 91.2

Because is over 2 standard deviations off the mean, I would

agree that he is moderate. How is the neuro judging? If it would

help, I would ask him to explain his scale. Is he eyeballing it?

Does he have access to data on the average cephalic ratio? There is

no shortage of specialists who will tell you what you want to hear

if what you want to hear is " no helmet. " That said, it is YOUR

decision entirely whether or not you want to go the helmet and band

route. Are both of you satisfied with 's headshape if NO

additional improvement occurs? If one of both of you still harbor

reservations on the subject, keep in mind that for best results from

cranial remolding, you should be making a decision soon. There is a

recent study out showing brachy to be more difficult to correct that

plagio (LINKS/PLAGIO STUDIES.) Since you will be evaluating in

2 months, when he is 9 months, to make your final, final decision on

banding, do you know if you have any active banding choices in your

area?

I also have some rough ratios from when I was repo'ing Remy you

might find helpful. I estimated these ratios from photos, so it

certainly isn't scientific! It showed a general trend of

improvement. At 5 months and the start of repo, Remy's cephalic

ratio was a 1.00. At 11 months, when we officially graduated her,

she was a .94. At 18 months, when we did a series of post-treatment

progress photos, she was a .86. I just wanted to point out that we

did see noticeable rounding from 7 to 9 months of age, a tiny bit of

additional rounding occur fron 9 to 11 months, and that we did see

additional elongation of her head from 11 to 18 months. Your

neuro's comment that aggressive repo will no longer yield results in

contradicts my own experience with my daughter. It may be also

of interest to you that when we made our decision to helmet or not

to helmet (when Remy was 8 months old), her cephalic ratio was still

really out of whack.... I didn't know what average or standard

deviations were when we made our decision!

Since you are putting your banding decision on hold for now,

definitely keep aggressively repo'ing! I know it can be a mind-

blowing headache and exhausting to keep up, but you can still see

some results in a 7 month old!

Would you please keep us posted on how your aggressive repo and

decision process is going with ?

Take care,

Christie (Mom to Repo'd Remy)

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

wrote:

> Hi everyone,

>

> We had our follow up appointment with the Neuro yesterday along

with

> a follow up scan of 's head. The orthotics department uses the

> STARscanner. It showed that his cephalic index is currently 95.1

> (only slightly better than the 95.9 he measured 6 weeks ago).

> Fortunately, when comparing the two scans, the change was most

> significant at the back of his head (he's brachy). He didn't grow

> wider at the ears or change at all in the front. According to the

> tech, she felt his case is " moderate " .

>

> Now to the Neuro's office...He looked at the scan and remarked

that

> there had been no significant change, and asked us our opinion on

> 's progress, scan aside. Both my husband and I agree that he

> looks much improved since we began repo'ing him last November. The

> Neruo said that on a scale of 1 to 10 (10 being most severe), he

> would classify between a 1 and 2 " extremely mild " . He

> absolutely doesn't feel that we should helmet . He also

doesn't

> think that aggressive repositioning will benefit his headshape at

> this point since the bones have already started to harden.

> Basically, he said 's head is " perfect " and not to worry. My

> husband beamed and did an " I told you so " to me. (He has been

> reluctantly supportive of my repo efforts. His position that

's

> headshape is " not that bad " was apparently justified by the

Neuro's

> evaluation.)

>

> Here are my issues with the visit....

> 1. How can the tech say moderate and the Neruo say extremely mild?

>

> 2. Did the scan truly capture an accurate Cephalic Index

> measurement? He was lying flat on his head while they scanned.

>

> 3. Stop aggressive repo??? I just flat out don't agree with that.

>

> What I plan to do....

> Keep repo'ing as I have been. I'm in agreement that most

likely

> doesn't need a helmet. I think he has made progress and will

> continue to do so with my intervention (regardless of what the

Neuro

> says). But, with that said, if in two months I feel he hasn't made

> enough progress with my repo efforts, I plan to go with a helmet.

> Yes, he will be older than most, and probably will have to wear it

> longer, but at least I will be able to say I tried everything

while

> I had the opportunity.

>

> Thanks for listening,

>

> Kel (currently repo'ing 7 month old )

[Guest guest]

Kel,

I too had my Ped say that my son's plagio was moderate and the

cranial maxofacial (??) surgeon say it was a 1.5-2 out of 10 and that

his head looked fine. he did say it was our decision though and that

we had to think of the future - what if our son goes bald early, or

what if he joins the swim team and shaves his head?

I guess maybe the surgeons see just severe cases that they can say

that.

We went with the helmet. It was a hard decision - was 9 mos

when he got it, but we just figured that he deserved to be more

perfect than he is already. It is a very tough decision. After

being in the helmet for 10 days we can already see the improvements

though. We tried repo, but I don't think we were very good at it as

we didn't see much of a difference. It is great that you guys are so

agressive and can see the difference. I appauld you for that.

When we went to CT of course they pointed out things that we didn't

notice, like his ears weren't even, and his forehead stuck out more

on one side etc. and like the surgeon warned us - they did make it

seem more severe that it was.

Keep up with the repo and 9 months isn't too old to get a helmet if

it comes down to that. If it really is mild-moderate it won't take

more than 3-4 mos I am sure!

> > Hi everyone,

> >

> > We had our follow up appointment with the Neuro yesterday along

> with

> > a follow up scan of 's head. The orthotics department uses

the

> > STARscanner. It showed that his cephalic index is currently 95.1

> > (only slightly better than the 95.9 he measured 6 weeks ago).

> > Fortunately, when comparing the two scans, the change was most

> > significant at the back of his head (he's brachy). He didn't grow

> > wider at the ears or change at all in the front. According to the

> > tech, she felt his case is " moderate " .

> >

> > Now to the Neuro's office...He looked at the scan and remarked

> that

> > there had been no significant change, and asked us our opinion on

> > 's progress, scan aside. Both my husband and I agree that he

> > looks much improved since we began repo'ing him last November.

The

> > Neruo said that on a scale of 1 to 10 (10 being most severe), he

> > would classify between a 1 and 2 " extremely mild " . He

> > absolutely doesn't feel that we should helmet . He also

> doesn't

> > think that aggressive repositioning will benefit his headshape at

> > this point since the bones have already started to harden.

> > Basically, he said 's head is " perfect " and not to worry. My

> > husband beamed and did an " I told you so " to me. (He has been

> > reluctantly supportive of my repo efforts. His position that

> 's

> > headshape is " not that bad " was apparently justified by the

> Neuro's

> > evaluation.)

> >

> > Here are my issues with the visit....

> > 1. How can the tech say moderate and the Neruo say extremely mild?

> >

> > 2. Did the scan truly capture an accurate Cephalic Index

> > measurement? He was lying flat on his head while they scanned.

> >

> > 3. Stop aggressive repo??? I just flat out don't agree with that.

> >

> > What I plan to do....

> > Keep repo'ing as I have been. I'm in agreement that most

> likely

> > doesn't need a helmet. I think he has made progress and will

> > continue to do so with my intervention (regardless of what the

> Neuro

> > says). But, with that said, if in two months I feel he hasn't

made

> > enough progress with my repo efforts, I plan to go with a helmet.

> > Yes, he will be older than most, and probably will have to wear

it

> > longer, but at least I will be able to say I tried everything

> while

> > I had the opportunity.

> >

> > Thanks for listening,

> >

> > Kel (currently repo'ing 7 month old )

[Guest guest]

Hi Kel,

Reping at 's age really would be quite a challenge at this

point. It sounds to me that you are unhappy enough with his

headshape at this point that you would not be happy if he didn't

have any further self correction. I would do another consult if you

can somewhere else. Do you live near Cranial Tech, where you could

do a free consult? Do you know if the neuro you saw is pro banding

anyway? Good luck with your decision.

, mom to Hannah, DOCgrad

Cape Cod, Ma

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

wrote:

> Hi everyone,

>

> We had our follow up appointment with the Neuro yesterday along

with

> a follow up scan of 's head. The orthotics department uses the

> STARscanner. It showed that his cephalic index is currently 95.1

> (only slightly better than the 95.9 he measured 6 weeks ago).

> Fortunately, when comparing the two scans, the change was most

> significant at the back of his head (he's brachy). He didn't grow

> wider at the ears or change at all in the front. According to the

> tech, she felt his case is " moderate " .

>

> Now to the Neuro's office...He looked at the scan and remarked

that

> there had been no significant change, and asked us our opinion on

> 's progress, scan aside. Both my husband and I agree that he

> looks much improved since we began repo'ing him last November. The

> Neruo said that on a scale of 1 to 10 (10 being most severe), he

> would classify between a 1 and 2 " extremely mild " . He

> absolutely doesn't feel that we should helmet . He also

doesn't

> think that aggressive repositioning will benefit his headshape at

> this point since the bones have already started to harden.

> Basically, he said 's head is " perfect " and not to worry. My

> husband beamed and did an " I told you so " to me. (He has been

> reluctantly supportive of my repo efforts. His position that

's

> headshape is " not that bad " was apparently justified by the

Neuro's

> evaluation.)

>

> Here are my issues with the visit....

> 1. How can the tech say moderate and the Neruo say extremely mild?

>

> 2. Did the scan truly capture an accurate Cephalic Index

> measurement? He was lying flat on his head while they scanned.

>

> 3. Stop aggressive repo??? I just flat out don't agree with that.

>

> What I plan to do....

> Keep repo'ing as I have been. I'm in agreement that most

likely

> doesn't need a helmet. I think he has made progress and will

> continue to do so with my intervention (regardless of what the

Neuro

> says). But, with that said, if in two months I feel he hasn't made

> enough progress with my repo efforts, I plan to go with a helmet.

> Yes, he will be older than most, and probably will have to wear it

> longer, but at least I will be able to say I tried everything

while

> I had the opportunity.

>

> Thanks for listening,

>

> Kel (currently repo'ing 7 month old )