New Member from Victorville, CA

[Guest guest]

Hi:

I just joined this group a couple of weeks ago and have been educated

quickly on the subject of plagio. My daughter, Sara is almost 9 months

old and has a flat right side since about 2 months. She only wanted to

look to the right starting at a few weeks of age Her pediatrician kept

saying, " Make the right side totally boring and put her toys to the

left " . She eventually turned her head and now has no problems with Tort.

Pediatrician kept saying, " Lets just watch the head shape- it will

eventually shape up. No mention of the " Plagio word " . Me being the

trusting mother just kept watching Sara's head & not worrying. Also had

two friends with babies with same things (Tort & Plagio) and they were

being told the same things by their pediatricians. (Again no doctor ever

used the terms Tort or Plagio) Finally at 6 months of age, pediatrician

says, " Head shape isn't improving and refers me to Loma University

Children's Hospital. It was then when I talked with them that the term

Plagiocephaly was first used. At that point I got on the internet and

was overwhelmed with all of the information out there. I could kick

myself for not researching it sooner. It has taken 2 months to get into

Loma but we did have an appointment finally yesterday and Plagio

was officially diagonosed. There a few more appointments to go to and

I'm told my daughter will be in a helmet within a month. I'm going to

try & push things along. It is so frustrating to be hearing that the

clock is ticking and yet have to continue to wait for appointments to

happen. I have a few questions:

Has anyone else had their baby treated by Loma ? If so what was

your experience like? Has anyone had their baby put in a helmet at close

to 10 months of age? (Sara will be 9 months on December 6 and I'm sure

it will take longer than that to get her in her helmet.) What kind of

correction did you see?

That is about it. Any advice is appreciated!

Thanks for the support.

Sara's Mom

Carlucci

Rylar@...

Imagine the disincentive to software development if after months of work

another company could come along and copy your work and market it under

its

own name...without legal restraints to such copying, companies like Apple

could not afford to advance the state of the art. "

-- Bill Gates, CEO, Microsoft

[Guest guest]

,

Welcome to the group and man can I relate to your story!! We noticed our

daughter's flatness at 3 months and were told not to worry that it would

round out on its own. At 7 months Hubby pressed the ped about the head shape

and he referred us to a neuro. The neuro diagnosed plagio and prescribed the

helmet. It took 2 months to get through all the appointments so she did not

start the helmet therapy until 9 months of age. We don't live in CA, but we

did use a locally made helmet like I think you are describing - maybe you

will be using the STARband. We saw good results and are very glad that we did

it. My advice is to push like crazy to get started as soon as possible. If

you are going to be using a passive helmet then you need all the time you can

get as early as you can start!

I'm sorry that your ped did not get the ball rolling for you sooner. I had

the same experience and held some very negative feelings for that ped for a

long time. I am over that now and have moved on to a new ped, but it still

baffles me that these peds are not educated on plagio and tort and doing all

they can to help new parents. It sounds like you are on the right track now

and I will be looking forward to hearing more from you as you progress

through treatment. I think you will find this group to be an awesome source

of support, advice and friendship. Good wishes to you!

Marci (Mom to )

Oklahoma

[Guest guest]

Yeah !!!

I thought we had someone in the group that had been to the facility that

was referring to! We have such a GREAT group of moms and dads here - thanks

for all the great advice and support you folks offer!

Marci

[Guest guest]

,

My daughter, , 10 mos, is being treated at Loma .

I have to tell you I totally understand your frustration. My

pediatrician wanted to wait until 8 months to refer us, but after her

6 month visit I asked for a referral. When I first called Loma ,

they told me it would be 2 months to get an apt. I somehow managed to

get an apt within 2 weeks, but was 7 1/2 months by the time

she got the helmet.

I have been very pleased with the results. She had Bracho, or flat

back side and they diagnosed her as moderate. Within 2 1/2 months

there was tremendous improvement. In fact, she is pretty much almost

done with her helmet. Her ortho was son and I have been

extremely pleased with him. I cannot say enough good things about

him. He is very sympathetic, attentive and knowledgable. Anytime I

had any concerns or problems I got a call back right away. We have

had a great experience at Loma .

If you have any other questions please feel free to e-mail me

cathyca25@....

> Hi:

>

> I just joined this group a couple of weeks ago and have been

educated

> quickly on the subject of plagio. My daughter, Sara is almost 9

months

> old and has a flat right side since about 2 months. She only wanted

to

> look to the right starting at a few weeks of age Her pediatrician

kept

> saying, " Make the right side totally boring and put her toys to the

> left " . She eventually turned her head and now has no problems with

Tort.

> Pediatrician kept saying, " Lets just watch the head shape- it will

> eventually shape up. No mention of the " Plagio word " . Me being

the

> trusting mother just kept watching Sara's head & not worrying.

Also had

> two friends with babies with same things (Tort & Plagio) and they

were

> being told the same things by their pediatricians. (Again no doctor

ever

> used the terms Tort or Plagio) Finally at 6 months of age,

pediatrician

> says, " Head shape isn't improving and refers me to Loma

University

> Children's Hospital. It was then when I talked with them that the

term

> Plagiocephaly was first used. At that point I got on the internet

and

> was overwhelmed with all of the information out there. I could

kick

> myself for not researching it sooner. It has taken 2 months to get

into

> Loma but we did have an appointment finally yesterday and

Plagio

> was officially diagonosed. There a few more appointments to go to

and

> I'm told my daughter will be in a helmet within a month. I'm going

to

> try & push things along. It is so frustrating to be hearing that

the

> clock is ticking and yet have to continue to wait for appointments

to

> happen. I have a few questions:

> Has anyone else had their baby treated by Loma ? If so what

was

> your experience like? Has anyone had their baby put in a helmet at

close

> to 10 months of age? (Sara will be 9 months on December 6 and I'm

sure

> it will take longer than that to get her in her helmet.) What kind

of

> correction did you see?

> That is about it. Any advice is appreciated!

> Thanks for the support.

>

>

> Sara's Mom

>

> Carlucci

> Rylar@i...

>

>

> Imagine the disincentive to software development if after months of

work

> another company could come along and copy your work and market it

under

> its

> own name...without legal restraints to such copying, companies like

Apple

> could not afford to advance the state of the art. "

> -- Bill Gates, CEO, Microsoft

[Guest guest]

,

Hi and welcome to the group! Just wanted to say, you are not alone in feeling that you should have been more aggressive. I think we all have felt that at some point. As a parent, of course the ultimate burden lies with us, but if you address your Doc with a concern, and they are the expert, and they tell us what direction to take, which we pay them to do, then I feel the real burden lies with the uneducated Docs dispersing medical information in an unprofessional way. The only reason I even went forward with the band so quickly, was because of this great group of parents that shared their befores & afters with me. If it hadn't been for the internet, who knows what I would have done- my ped did not find it necessary, but since I knew a little more because of the group, I pressed for the referral. When Sara was born, I think she's 5?, the internet was not yet in full swing, and even now the info is limited, but at least there is something now!

Don't for one second feel guilty- the medical profession as a whole let you down. You put your trust into them and they failed to provide you with educated answers. Only now are we second guessing Doctors, 10 years ago, you would have never even thought about it- and even now people don't think to do it!

I guess I just wanted to send warm wishes your way to say keep your chin up, your a great mom, the fact that your here talking about your daughter so lovingly and trying to help her in any way shows that immensely. We learn through experience, so hopefully we can prevent others from traveling down that same path. Good luck to you and Sara and the rest of your bunch!

Take Care,

' Mom

[Guest guest]

Marci & Cathi:

Thanks for your support & reponses. Cathi I will definitely be in

contact with you via email once I'm on to the next step. I'm happy to

know there is someone that I can be in contact with that is going through

Loma . They are preparing the reports on Sara right now & have told

me they will be done today so I will be on the phone tomorrow pushing for

the next step. I'm not a squeaky wheel by nature but have learned that I

HAVE to be for Sara's sake. This whole thing is so overwhelming. I'm

trying to take it just one day at a time. The guilt is constantly eating

at me that I should have been more aggressive in the beginning. I was

lulled into complacency because two of my friends with babies the same

age had the exact same things (tort & plagio) so I thought it was normal

for back sleepers and they would grow out of it! That and the lack of

concern from the pediatrician. I wonder when these peds are going to get

it! The back to sleep campaign has been around long enough that they

should be with it more on plagio.

Thanks again to all the group for the wonderful info & support.

Sara's Mom

Carlucci

Rylar@...

Imagine the disincentive to software development if after months of work

another company could come along and copy your work and market it under

its

own name...without legal restraints to such copying, companies like Apple

could not afford to advance the state of the art. "

-- Bill Gates, CEO, Microsoft

[Guest guest]

:

Hi & welcome to our group!!!! Do NOT feel guilty by not knowing

about plagio before your daughter had already flattened. Do NOT feel

guilty about listening to your pediatrician. You did everything

he/she told you to do & then some. You're doing the right thing now

and always had. Most of us in this group have experience very

similar stories to yours with your pediatrician. It is such a shame

peds are so passive with plagio.

But the important thing is that you're getting the treatment now. It

is not too late to start. My Abby began her DOC treatment at 11.5

mos old with severe plagio. We still were able to achieve about 60%

correction, which I'm thrilled with. You might not get 100%

correction at an older age, but I'm sure you'll still get good

improvement. Anything is better than nothing I figured. Will Sara

be getting a passive style locally made helmet then? That's what it

sounds like.

I'm so glad you found our group & it looks like you found someone

else who is recieving treatment at your same location! That's great.

And even better that she is more than happy with her treatment thus

far. That's gotta be a relief to hear good news from your same

location.

Again, I'm so glad you found our group & we all look forward to

hearing about Sara's helmet success stories in the upcoming mos..

Please be sure to keep us all updated.

Debbie Abby's mom DOCgrad 6/22/01

MI

> Hi:

>

> I just joined this group a couple of weeks ago and have been

educated

> quickly on the subject of plagio. My daughter, Sara is almost 9

months

> old and has a flat right side since about 2 months. She only wanted

to

> look to the right starting at a few weeks of age Her pediatrician

kept

> saying, " Make the right side totally boring and put her toys to the

> left " . She eventually turned her head and now has no problems with

Tort.

> Pediatrician kept saying, " Lets just watch the head shape- it will

> eventually shape up. No mention of the " Plagio word " . Me being

the

> trusting mother just kept watching Sara's head & not worrying.

Also had

> two friends with babies with same things (Tort & Plagio) and they

were

> being told the same things by their pediatricians. (Again no doctor

ever

> used the terms Tort or Plagio) Finally at 6 months of age,

pediatrician

> says, " Head shape isn't improving and refers me to Loma

University

> Children's Hospital. It was then when I talked with them that the

term

> Plagiocephaly was first used. At that point I got on the internet

and

> was overwhelmed with all of the information out there. I could

kick

> myself for not researching it sooner. It has taken 2 months to get

into

> Loma but we did have an appointment finally yesterday and

Plagio

> was officially diagonosed. There a few more appointments to go to

and

> I'm told my daughter will be in a helmet within a month. I'm going

to

> try & push things along. It is so frustrating to be hearing that

the

> clock is ticking and yet have to continue to wait for appointments

to

> happen. I have a few questions:

> Has anyone else had their baby treated by Loma ? If so what

was

> your experience like? Has anyone had their baby put in a helmet at

close

> to 10 months of age? (Sara will be 9 months on December 6 and I'm

sure

> it will take longer than that to get her in her helmet.) What kind

of

> correction did you see?

> That is about it. Any advice is appreciated!

> Thanks for the support.

>

>

> Sara's Mom

>

> Carlucci

> Rylar@i...

>

>

> Imagine the disincentive to software development if after months of

work

> another company could come along and copy your work and market it

under

> its

> own name...without legal restraints to such copying, companies like

Apple

> could not afford to advance the state of the art. "

> -- Bill Gates, CEO, Microsoft

[Guest guest]

Hi ,

I live in the orange county,CA area and we had our daughter referred

to UCI hospital. Even we had a couple of months (infact 3 months) of

delay waiting for appointments.

We just got band for Kaanthi (who almost 7 months). We were to

referred to geneticist. She ordered for CAT scan and ruled out cranio

and we got prescription for DOC band.

If you thing if a particular specialist is delaying because of lack

of appointments try to meet a neuro surgoen. Generally they aren't

that swamped with patients and you will get an appointment soon

enough. Hopefully they will prescribe the band right away.

Also make an appointment with DOC band folks (if you plan to use DOC

band) before hand and try to cut the delay there too.

Please let me know if you need any specific information.

All the best.

Prasad

Dad of Kaanthi

> Hi:

>

> I just joined this group a couple of weeks ago and have been

educated

> quickly on the subject of plagio. My daughter, Sara is almost 9

months

> old and has a flat right side since about 2 months. She only wanted

to

> look to the right starting at a few weeks of age Her pediatrician

kept

> saying, " Make the right side totally boring and put her toys to the

> left " . She eventually turned her head and now has no problems with

Tort.

> Pediatrician kept saying, " Lets just watch the head shape- it will

> eventually shape up. No mention of the " Plagio word " . Me being

the

> trusting mother just kept watching Sara's head & not worrying.

Also had

> two friends with babies with same things (Tort & Plagio) and they

were

> being told the same things by their pediatricians. (Again no doctor

ever

> used the terms Tort or Plagio) Finally at 6 months of age,

pediatrician

> says, " Head shape isn't improving and refers me to Loma

University

> Children's Hospital. It was then when I talked with them that the

term

> Plagiocephaly was first used. At that point I got on the internet

and

> was overwhelmed with all of the information out there. I could

kick

> myself for not researching it sooner. It has taken 2 months to get

into

> Loma but we did have an appointment finally yesterday and

Plagio

> was officially diagonosed. There a few more appointments to go to

and

> I'm told my daughter will be in a helmet within a month. I'm going

to

> try & push things along. It is so frustrating to be hearing that

the

> clock is ticking and yet have to continue to wait for appointments

to

> happen. I have a few questions:

> Has anyone else had their baby treated by Loma ? If so what

was

> your experience like? Has anyone had their baby put in a helmet at

close

> to 10 months of age? (Sara will be 9 months on December 6 and I'm

sure

> it will take longer than that to get her in her helmet.) What kind

of

> correction did you see?

> That is about it. Any advice is appreciated!

> Thanks for the support.

>

>

> Sara's Mom

>

> Carlucci

> Rylar@i...

>

>

> Imagine the disincentive to software development if after months of

work

> another company could come along and copy your work and market it

under

> its

> own name...without legal restraints to such copying, companies like

Apple

> could not afford to advance the state of the art. "

> -- Bill Gates, CEO, Microsoft