San Diego - 2nd Opinion?

January 4, 2009

Hello!

Please forgive me for the long e-mail. It seems like

this group has so much knowledge and has experienced everything; thus, being

our best option to get some of our questions answered.

Our youngest son (Tyler) is almost 5 months old and has Plagio/Brachy

and Tort/Tilt issues. When he was 8 wks old we were instructed to do 1 PT

stretch (3 sets for 15 seconds/3 times per day). We continued the

stretches for the almost 2 months when our Pediatrician wrote us a prescription

for an evaluation from CT. She said that we could receive the information

from them and make a decision. CT was really booked and it took us a long

time to get an appointment. Our appointment was this past week and we are

now waiting on insurance approval. Thanks to this group, I went in with

so much information and knew that I wanted to ask for measurements and for the

pictures to be sent via e-mail.

Here is the information that they gave us:

12mm variance (from roundest to flattest side?)

Comments: “Tyler presents with

significant occipital flattening complicated by asymmetry and neck

involvement. DOC band Rx recommended at this time due to age and

severity.”

Plagiocepahly: Right (moderate)

Brachycephaly: R>L, Bilateral, Squamoid Bulging

Occipital Flattening: Right

Frontal Flattening: Left

Anterior Ear Shift: Right

Anterior Orbit Shift: Right

Eye Fissure Narrowed: Left

Head Height: Posterior

Favors turning head: Right

Head Tilt: Left

* The PT instructed us to continue the 1 stretch and add a

second for the tilt. Now we have to do PT 5 times per day (3 sets of each

stretch for 15 seconds).

Here are our questions:

Has anyone in San Diego gone

to see a Doctor/Specialist for a 2nd opinion? If yes,

where did you go?

Does the above evaluation seem pretty standard for

everyone on the site? I’m aware that we are “moderate”

and that “normal” is <2mm variance. I have seen a

variance on this site of 9-15mm.

I’ve seen mainly Plagio postings but have not

seen many with Plagio and Brachy. For those of you with children who

have both, are these standard comments? They told us that if we did

not band him that he would have more issues down the road. Some of

them including a misaligned jaw, increased bulging of his cheek, forehead

and above his ears, increased head height, difficulty fitting into sports

helmets when he is older, facial asymmetry issues and one eye being more

slanted while the other is round.

I went to the appointment expecting them to recommend

banding for Plagio and his “flat spot” on one side. I did not

expect everything else mentioned above in question 3. Perhaps I am a

little hesitant because I might expect to hear such serious comments from a Plastic

Surgeon or another doctor that is a Pediatric Specialist.

We would really appreciate any comments or insight that you

can pass along.

Thanks in Advance,

Jenna &

January 4, 2009

I am not from the San Diego area so I cannot help you there. What I

will say though is that just like you we went for a second opinion and

even a third and a fourth before we finally made our decision. We

ended up choosing ECA in the DC area and we regret it dearly. We

should have picked CT or Orthomerica...

This said, after wasting so much time in the wrong helmet, our

daughter is now in a DOC band and had both plagio (8 mm) and brachy

(98%). At our last measurements, her plagio was down to 4mm and her

brachy down to 90% after 7 weeks of treatment. We are going to

Orthomerica tomorrow to get more accurate measurements.

CT's reputation is hard to beat and they stand behind their product.

I am sure others will second me on that.

Also, let me add that the little boy in my daughter's daycare also had

plagio and is not being treated. His head shape is not getting better

and I can definitely see the misalignment in his ears, his jaw and his

eyes. His forehead is also very prominent.

Keep doing your research, but choose wisely and don't wait too long to

treat your son's plagio/brachy.

Leila

Maysa, 11m 3w, 9 weeks in DOC band + CST

http://mymaysa.wordpress.com/

>

> Hello!

>

> Please forgive me for the long e-mail. It seems like this group has so

> much knowledge and has experienced everything; thus, being our best

> option to get some of our questions answered.

>

> Our youngest son (Tyler) is almost 5 months old and has Plagio/Brachy

> and Tort/Tilt issues. When he was 8 wks old we were instructed to do 1

> PT stretch (3 sets for 15 seconds/3 times per day). We continued the

> stretches for the almost 2 months when our Pediatrician wrote us a

> prescription for an evaluation from CT. She said that we could receive

> the information from them and make a decision. CT was really booked and

> it took us a long time to get an appointment. Our appointment was this

> past week and we are now waiting on insurance approval. Thanks to this

> group, I went in with so much information and knew that I wanted to ask

> for measurements and for the pictures to be sent via e-mail.

>

> Here is the information that they gave us:

>

> 12mm variance (from roundest to flattest side?)

>

> Comments: " Tyler presents with significant occipital flattening

> complicated by asymmetry and neck involvement. DOC band Rx recommended

> at this time due to age and severity. "

>

> Plagiocepahly: Right (moderate)

>

> Brachycephaly: R>L, Bilateral, Squamoid Bulging

>

> Occipital Flattening: Right

>

> Frontal Flattening: Left

>

> Anterior Ear Shift: Right

>

> Anterior Orbit Shift: Right

>

> Eye Fissure Narrowed: Left

>

> Head Height: Posterior

>

> Favors turning head: Right

>

> Head Tilt: Left

>

> * The PT instructed us to continue the 1 stretch and add a second for

> the tilt. Now we have to do PT 5 times per day (3 sets of each stretch

> for 15 seconds).

>

> Here are our questions:

>

> 1. Has anyone in San Diego gone to see a Doctor/Specialist for a

> 2nd opinion? If yes, where did you go?

> 2. Does the above evaluation seem pretty standard for everyone on

> the site? I'm aware that we are " moderate " and that " normal " is <2mm

> variance. I have seen a variance on this site of 9-15mm.

> 3. I've seen mainly Plagio postings but have not seen many with

> Plagio and Brachy. For those of you with children who have both, are

> these standard comments? They told us that if we did not band him that

> he would have more issues down the road. Some of them including a

> misaligned jaw, increased bulging of his cheek, forehead and above his

> ears, increased head height, difficulty fitting into sports helmets when

> he is older, facial asymmetry issues and one eye being more slanted

> while the other is round.

>

> I went to the appointment expecting them to recommend banding for Plagio

> and his " flat spot " on one side. I did not expect everything else

> mentioned above in question 3. Perhaps I am a little hesitant because I

> might expect to hear such serious comments from a Plastic Surgeon or

> another doctor that is a Pediatric Specialist.

>

> We would really appreciate any comments or insight that you can pass

> along.

>

> Thanks in Advance,

>

> Jenna &

>

> <http://lilypie.com> Lilypie 1st Birthday Ticker <http://lilypie.com>

> Lilypie 2nd Birthday Ticker

>

January 4, 2009

Hi Jenna,

Our specialist (cranio facial plastic surgeon) recommends banding at

10 mm of asymmetry or more. With 12 and also having some brachy, I

would band. I'm not sure of the severity of the brachy. Usually I

think CT give the brachy measurement as x Standard deviations from the

norm. I think 2 standard deviations is normal. We went with a

starband, so our assesment was different. There was a scan of her head

that had a lot of measurements. My daughter had brachy with just a

little asymmetry, so her band was really only intended to correct the

brachy.

Starting at 5 mo is a good idea since the head is growing a lot. Also

CT in San Diego has a great reputation.

Good luck with everything and keep us posted.

-christine

sydney, 3 yrs, starband grad