Re: Please, take a look / Now it's up to you!

[Guest guest]

Hi Leila

My son has a similar profile to Maysa's...

He also has Brachy and tort; which we addressed ourselves by

encouraging him to always look to the right. His pediatrician

totally missed the Torticollis and I diagnosed him myself with the

confirmation of a second pediatrician because I noticed very early

that he ALWAYS slept in the same position which caused flattening on

left of his head. Even when I repositioned myh son, he'd end up back

on that left flat spot.

We decided to band and we wanted to do it early to take advantage of

the optimal banding time which CT states is between four to six

months. We paid out of pocket because insurance didn't approve CT's

DOCBand and I really didn't want to waste the time dealing with

insurance and I just wanted to get my son in the band.

This decision was based on several sleepless nights worth of research

for Brachy. While repositioning may work for Plagio, it's VERY

difficult to reposition and correct Brachy... But it was our decision

for our son. In fact, a lot of the material/research I ended up

finding was in the " files " link for this group. I didn't join the

group until we were in the band already.

You are facing the same crossroads we did; to band or not to band OR

try repositioning then to band. In my non-medical-professional

opinion, I'd band Maysa. Once again, based on her profile in her

PhotoStudy (just like my son's Brachy), repositioning alone may not

work for her Brachy.

We are also going to " encourage " my son, once out of the helmet, to

sleep on his sides and even tummy because truthfully, I can't go

through this experience again... it's been a nightmare for me as my

son is our first child and I blamed my lack of Mommy skills.

Hope we've been able to help you in your decision making... also keep

in mind that MOST of us are pro-banding as MOST of our kids are in

bands or have graduated from bands (which is why I didn't want to

join the group until after we made our final decision as to not skew

our decision).

Melinda

Mommy to Keegan, 5 months 3 weeks, R Tort / Brachy, DOCBand - 4 weeks

3 days 8 hours... That's how long it's also been since he's slept

well too!

>

> Hello to all,

>

> Could some of you please take a look at the before pics of my

> daughter Maysa in the M folder on page 90. We took her to CT this

> past Wednesday and I don't know what to make of it. We did not get

a

> sheet of her measurements but when I asked, the PT told me she was

at

> a 7mm and then told me that she had moderate brachy-plagiocephaly.

> What do you think?

>

> Her head is changing every day it seems and I think that I am going

> crazy. She has been handling tummy time a lot more just within

this

> past week but she still sleeps a lot, on her back...

>

> I felt that the therapist at CT was trying to sell us the band and

> didn't even have us talk to their insurance specialist. As much as

I

> was anxious to pay them a visit, I am quite disappointed.

>

> Also, after examining her the therapist was saying that the fact

that

> she has a right tort makes it hard for her to turn right, which is

so

> not the case. What she can't do is tilt her head left. When I

said

> that, she looked at her again and said oh yes, she (my daughter)

was

> just trying to trick her.

>

> Needless to say that I wasn't too impressed...

>

> Leila, mother of Maysa (5 months, right tort, brachy-plagio)

>

[Guest guest]

Hi Leila!

Of course I can share! I just didn't have the time to convert PDF to

jpg yet. I posted under " K " .

Also, with or without the band... doesn't change the fact that Maysa

is SUPER cute!

Please keep us all informed about your decision.

(Also, I made the decision to band and asked my husband to support my

decision... He too felt, based on pediatrician's finding, that

Keegan's head would round out that's until I showed him the

difference between plagio and brachy/plagio).

Melinda

> >

> > Hello to all,

> >

> > Could some of you please take a look at the before pics of my

> > daughter Maysa in the M folder on page 90. We took her to CT this

> > past Wednesday and I don't know what to make of it. We did not

get

> a

> > sheet of her measurements but when I asked, the PT told me she

was

> at

> > a 7mm and then told me that she had moderate brachy-plagiocephal

y.

> > What do you think?

> >

> > Her head is changing every day it seems and I think that I am

going

> > crazy. She has been handling tummy time a lot more just within

> this

> > past week but she still sleeps a lot, on her back...

> >

> > I felt that the therapist at CT was trying to sell us the band

and

> > didn't even have us talk to their insurance specialist. As much

as

> I

> > was anxious to pay them a visit, I am quite disappointed.

> >

> > Also, after examining her the therapist was saying that the fact

> that

> > she has a right tort makes it hard for her to turn right, which

is

> so

> > not the case. What she can't do is tilt her head left. When I

> said

> > that, she looked at her again and said oh yes, she (my daughter)

> was

> > just trying to trick her.

> >

> > Needless to say that I wasn't too impressed...

> >

> > Leila, mother of Maysa (5 months, right tort, brachy-plagio)

> >

>

[Guest guest]

Hi Leila/Melinda (and group),

My name is . My daughter, Aryana, was recently evaluated by CT in San Diego and was also diagnosed with brachycephaly and left plagiocephaly. Her profile/pictures are nearly identical to Maysa's. My husband and I have also been struggling as to if she needs to have the band, or not. On one hand, CT indicated that Aryana's case is mild to moderate, and yet their 'measurements' indicated that she is outside the 4th deviation (and according to them and our insurance, only being outside of the 2nd deviation is required for treatment/banding). I question their measurements in that if our daughter's case is so mild/moderate, then how can she be so far off the charts? It felt like a sales job and yet we are still left wondering as to if we should band or not.

We were told by CT that her condition poses no medical risks, and were also told that in many cases, many parents of daughters choose not to band since girls typically have hair, which covers it up.

I am feeling very much the same reaction as Melinda. I've been feeling very guilty as a new mom as this is our first child and at the same time just wanting to give our daughter the best care she needs. We are scheduled to have our daughter remeasured and will make a decision based on that (now that we've done our research and feel better about making an informed decision). I suspect, like Melinda, that we will decide to band as we too feel that repositioning will not help with the brachy.

We were just notified on Friday that our insurance (Health Net) will cover $2200 of it, which is great.

I too have been one of the group members who have been reading all of the postings and learning from you all. This group has been a great wealth of information. Many thanks!

As it is likely that we will be banding our daughter very soon, I look forward to learning even more and gaining support from this group. Good luck with your decision, Leila. I feel your pain...we're in the same boat.

Sincerely,

(mom to Aryana, 5 months 1 week, L Plagio/Brachy - soon to determine using DOC band)

[Guest guest]

My daughter was referred to a specialist at her 4 mo appt, and in her

band by 5 mo. Our specialist (cranio facial plastic surgeon) never

used " mild,moderate,severe " . He told us the numbers he uses as

guidelines for banding - 10 mm or asymmetry or 90% cranial ratio

(brachy measurement). I appreciated this because I like hard data.

However even though my daughter was in the high 90's for cranial

ratio banding was still a tough decision.

Some people consider high brachy numbers less severe if the face is

symmetric... The labels are not the most important thing. I would look

at Aryana's head, and if you're unhappy with the shape then band her.

I think one thing that made it easier for us was that the doctor did

here assessment, not the band provider, so I felt like if anything he

would be more likely to discourage a band (HMO would have to pay).

Maybe if the person doing the eval is the band provider you're more

likely to feel like it is a sales pitch. I would try to ignore that

part and just figure out if your child needs a band, and who you would

be most comfortable with doing the banding (based on experience and

results with other children).

I am also a first time mom with lots of guilt about my daughter's flat

head, but I know I did my best to fix it and she got a ton of

improvement while in her band.

-christine

sydney 2.5 yrs starband grad

>

> Hi Leila/Melinda (and group),

> My name is . My daughter, Aryana, was recently evaluated by CT

in San Diego and was also diagnosed with brachycephaly and left

plagiocephaly. Her profile/pictures are nearly identical to Maysa's.

My husband and I have also been struggling as to if she needs to have

the band, or not. On one hand, CT indicated that Aryana's case is mild

to moderate, and yet their 'measurements' indicated that she is

outside the 4th deviation (and according to them and our insurance,

only being outside of the 2nd deviation is required for

treatment/banding). I question their measurements in that if our

daughter's case is so mild/moderate, then how can she be so far off

the charts? It felt like a sales job and yet we are still left

wondering as to if we should band or not.

> We were told by CT that her condition poses no medical risks, and

were also told that in many cases, many parents of daughters choose

not to band since girls typically have hair, which covers it up.

> I am feeling very much the same reaction as Melinda. I've been

feeling very guilty as a new mom as this is our first child and at the

same time just wanting to give our daughter the best care she needs.

We are scheduled to have our daughter remeasured and will make a

decision based on that (now that we've done our research and feel

better about making an informed decision). I suspect, like Melinda,

that we will decide to band as we too feel that repositioning will not

help with the brachy.

> We were just notified on Friday that our insurance (Health Net) will

cover $2200 of it, which is great.

> I too have been one of the group members who have been reading all

of the postings and learning from you all. This group has been a great

wealth of information. Many thanks!

> As it is likely that we will be banding our daughter very soon, I

look forward to learning even more and gaining support from this

group. Good luck with your decision, Leila. I feel your pain...we're

in the same boat.

> Sincerely,

>

> (mom to Aryana, 5 months 1 week, L Plagio/Brachy - soon to determine

using DOC band)

>

[Guest guest]

Many thanks for the support and input. While I feel Cranial Technologies was very kind and professional, at least for our experience, the first round did feel "sales-y." That being said, it's obvious they are a great company doing wonderful things for many. And we are likely to benefit from their services upon our decision to band our daughter.

Also thanks to the fellow San Diegans for their advice/referrals/support. It is greatly appreciated as we were unaware other locations.

Sincerely,

(mom to Aryana, 5 months 1 week, L Plagio/Brachy - soon to determine banding)