Looking for positive support from others

[Guest guest]

Hi my name is Regan and my 4 month old daughter, Cypress, was diagnosed

with Plagio last week. We meet with an Orthotic specialist from Hanger

tomorrow morning. I am thrilled it is treatable but am feeling

extremely emotional and overwhelmed. I have no family where I live and

few friends....I am trying reach out and find support and have found

myself here. I would love to hear any words of wisdom from those that

can relate to the initial feelings and reactions that you as parents

went through. Thanks!

[Guest guest]

Four months is the optimal time to start. Cypress is such cool name for a little girl! I was pretty alone in my decision to band my husband thought my son's head would round out on it's own and said funny heads run in the family . Still it isn't something we are on the same page about. My family was really supportive but they live 3000 miles away. So I feel where you are coming from. Let us know how it goes tomorrow.,Momto Elijah, DOC Band Grad 8/11/08From: rfelix75 <rfelix75@...>Subject: Looking for positive support from othersPlagiocephaly Date: Monday, October 6, 2008, 3:40 PM

Hi my name is Regan and my 4 month old daughter, Cypress, was diagnosed

with Plagio last week. We meet with an Orthotic specialist from Hanger

tomorrow morning. I am thrilled it is treatable but am feeling

extremely emotional and overwhelmed. I have no family where I live and

few friends....I am trying reach out and find support and have found

myself here. I would love to hear any words of wisdom from those that

can relate to the initial feelings and reactions that you as parents

went through. Thanks!

[Guest guest]

Hello Regan,

You are not alone!! I am awaiting the band for my daughter and have had

many emotional bouts as well. It does seem to be better now that we actually

made the decision to band, but as I wait for the call that her band is in I

wonder if we made the right choice. I know in the long run it will be worth it,

but know that I think everyone had a period of being emotional and overwhelmed.

This is a really good place to get support and advice. Good luck and feel free

to write if you need any emotional support!

Mom to McKenna 6 months

> From: rfelix75 <rfelix75@...>

> Subject: Looking for positive support from others

> Plagiocephaly

> Date: Monday, October 6, 2008, 10:40 PM

> Hi my name is Regan and my 4 month old daughter, Cypress,

> was diagnosed

> with Plagio last week. We meet with an Orthotic specialist

> from Hanger

> tomorrow morning. I am thrilled it is treatable but am

> feeling

> extremely emotional and overwhelmed. I have no family where

> I live and

> few friends....I am trying reach out and find support and

> have found

> myself here. I would love to hear any words of wisdom from

> those that

> can relate to the initial feelings and reactions that you

> as parents

> went through. Thanks!

[Guest guest]

Hi Regan-

Welcome to the group. It's definitely an emotional roller coaster at

the beginning, so I know how you're feeling. Rest assured, it does get

better! We're here for you whenever you need us. You're starting the

banding process at an ideal age, so you should see great results in a

relatively short time. Good luck with everything! Please let us know

how your appointment with Hanger goes tomorrow. (If you'd like, you

can post your location and which Hanger office you're going to and

maybe get some feedback if anyone else has been to the same place).

Jake-2 (DOCBand Grad 9/19/08)

Jordan-4.5

>

> Hi my name is Regan and my 4 month old daughter, Cypress, was

diagnosed

> with Plagio last week. We meet with an Orthotic specialist from

Hanger

> tomorrow morning. I am thrilled it is treatable but am feeling

> extremely emotional and overwhelmed. I have no family where I live

and

> few friends....I am trying reach out and find support and have found

> myself here. I would love to hear any words of wisdom from those

that

> can relate to the initial feelings and reactions that you as parents

> went through. Thanks!

>

[Guest guest]

Hi Regan

Please don't feel alone - you're not. We have all been there and

shed our share of tears. While it is a very tough decision to have

your infant wear a helmet 23 hours a day for possibly 3-4 months, it is

a pretty effective treatment for the plagio - and the majority of

babies really don't seem to mind it.

My 7-month old Jake is in his 3rd week of his STARband and he is doing

great! He doesn't seem to mind at all when we put it on/take it off. I

have actually gotten pretty used to seeing him in it.

Please continue to post to this discussion board with any

questions/concerns you might be having!

Good luck!

Jenn

- 7 months - plagio & tort - STARband 3 weeks

>

> Hi my name is Regan and my 4 month old daughter, Cypress, was

diagnosed

> with Plagio last week. We meet with an Orthotic specialist from

Hanger

> tomorrow morning. I am thrilled it is treatable but am feeling

> extremely emotional and overwhelmed. I have no family where I live

and

> few friends....I am trying reach out and find support and have found

> myself here. I would love to hear any words of wisdom from those that

> can relate to the initial feelings and reactions that you as parents

> went through. Thanks!

>

[Guest guest]

Regan & -My daughter just got a STAR Band. I have always felt okay about it, as my daughter was born at 28 weeks & 2lbs 2oz, so I feel really lucky that this is the only real issues he has had. But, my husband was heart broken. I don't know about everyone else, but so far our experience has been great. My daughter acts does not act ANY different with the helmet on than she does with it off...honestly. Now, I know every child may not be that way, but in talking with some of the other parents in the Orthotic office, they all seemed to have a similar (positive) experience. I think it just hurts us to see our child with it on, because it makes them "different" & seems like it would bug them, but it really doesn't. And, at their age, they

don't care if people look at them.Good luck! -Shari Re: Looking for positive support from others

Hi Regan-

Welcome to the group. It's definitely an emotional roller coaster at

the beginning, so I know how you're feeling. Rest assured, it does get

better! We're here for you whenever you need us. You're starting the

banding process at an ideal age, so you should see great results in a

relatively short time. Good luck with everything! Please let us know

how your appointment with Hanger goes tomorrow. (If you'd like, you

can post your location and which Hanger office you're going to and

maybe get some feedback if anyone else has been to the same place).

Jake-2 (DOCBand Grad 9/19/08)

Jordan-4.5

>

> Hi my name is Regan and my 4 month old daughter, Cypress, was

diagnosed

> with Plagio last week. We meet with an Orthotic specialist from

Hanger

> tomorrow morning. I am thrilled it is treatable but am feeling

> extremely emotional and overwhelmed. I have no family where I live

and

> few friends....I am trying reach out and find support and have found

> myself here. I would love to hear any words of wisdom from those

that

> can relate to the initial feelings and reactions that you as parents

> went through. Thanks!

>

[Guest guest]

we are all here to help you and will do our best to be your trusted friend while you go through this process. My son had plagio diagnosed in month 4 as well. We sought treatment through Cranial Technologies in NJ because the local hanger in my area was not the greatest. What area are you from? We can offer advice as to what providers are in your area and what orthotists (these are the specialists who adjust the cranial bands and give measurments and such when you go to have adjustments) My son was banded at 4 1/2 months and was done with the band in 8 or so weeks so this is a great time to band as alot of growth will happen in the next few months. You are also hitting up the winter months were it is easier to have the child in the band (you dont have to worry so much about the heat and sweating)

First let us know where you are from and what Hanger says during your consult tomorrow. Best of luck and keep us informed. Tammy mother of DOC band graduate.

From: rfelix75 <rfelix75@...>Subject: Looking for positive support from othersPlagiocephaly Date: Monday, October 6, 2008, 10:40 PM

Hi my name is Regan and my 4 month old daughter, Cypress, was diagnosed with Plagio last week. We meet with an Orthotic specialist from Hanger tomorrow morning. I am thrilled it is treatable but am feeling extremely emotional and overwhelmed. I have no family where I live and few friends....I am trying reach out and find support and have found myself here. I would love to hear any words of wisdom from those that can relate to the initial feelings and reactions that you as parents went through. Thanks!

[Guest guest]

Hi Regan, Glad to see your message because support is what it is all about. I am already learning so much here just from watching others talk about different issues with plagio and torticollis. My son ( 11 mo.) got diagnosed with both only 6 weeks ago. He has started therapy for his neck and got a starband but we are still working on all the comfort stuff. We are looking into getting memory foam for his mattress possibly switching car seats and some other options that have been mentioned here. I've learned more from these mom's than the pediatrician. Please keep us updated on your little one. -chick-

Looking for positive support from others

Hi my name is Regan and my 4 month old daughter, Cypress, was diagnosed with Plagio last week. We meet with an Orthotic specialist from Hanger tomorrow morning. I am thrilled it is treatable but am feeling extremely emotional and overwhelmed. I have no family where I live and few friends....I am trying reach out and find support and have found myself here. I would love to hear any words of wisdom from those that can relate to the initial feelings and reactions that you as parents went through. Thanks!

[Guest guest]

I'm right there with you on that emotional roller coaster. The decision to correct my daughter came right before she was four months old. She'll be getting her helmet tomorrow and I'm a wreck. She was born with it and a severe case of torticollis that will probably need a surgical fix in the future. For now we're seeing how far PT alone will work. We might get away with just PT and botox down the road skipping the surgery altogether.

The good news is that she'll probably be " fixed " before she's 18 months and won't remember any of it. That's what I try to focus on. All of this is so much harder on me than her.

Mom to 4 1/2 month old twins Elly and Mia

On Mon, Oct 6, 2008 at 6:40 PM, rfelix75 <rfelix75@...> wrote:

Hi my name is Regan and my 4 month old daughter, Cypress, was diagnosed with Plagio last week. We meet with an Orthotic specialist from Hanger tomorrow morning. I am thrilled it is treatable but am feeling

extremely emotional and overwhelmed. I have no family where I live and few friends....I am trying reach out and find support and have found myself here. I would love to hear any words of wisdom from those that

can relate to the initial feelings and reactions that you as parents went through. Thanks!

[Guest guest]

My daughter just got her band yesterday and I am so much more at ease with the whole situation...she has adjusted beautifully. i too was very unsure and said about the whole thing but it does get better. the people on this board are great and we are all here for you...keep posting.

> From: rfelix75 <rfelix75 (DOT) com>> Subject: Looking for positive support from others> Plagiocephaly> Date: Monday, October 6, 2008, 10:40 PM> Hi my name is Regan and my 4 month old daughter, Cypress,> was diagnosed > with Plagio last week. We meet with an Orthotic specialist> from Hanger > tomorrow morning. I am thrilled it is treatable but am> feeling > extremely emotional and overwhelmed. I have no family where> I live and > few friends....I am trying reach out and find support and> have found > myself here. I would love to hear any words of wisdom from> those that > can relate to the initial feelings and reactions that you> as parents > went through. Thanks!

[Guest guest]

Welcome Regan:

You have found a great place for support. My daughter got

started in her Starband at almost 5mos old. It has never bothered her

and I can tell you that I credit the band to helping me be more at

ease as she learned to sit up on her on her own and now just about

3mos into the adventure she is crawling faster then any baby I have

ever seen and pulling herself up and trying to walk. I really think

in addition to getting her head nice and round it has helped me be

less nervous about her adventurous ways.

I know I cried for her and feared that it would be so hard for her

but she has never had a problem with sleeping or prgressing as any

other baby would. The only think I get out in public is remarks

about how cute she is. I also love little kids because they always

ask right out why she is wearing it and so I always thank them for

asking and tell them why and thier parents get the info as well.

's band has become such a part of our lives I really only

notice it when someone asks me about it. I bet you will feel the same

way in a few weeks.

I have also had fun with decorating it for the seasons and I have to

say despite not being very " crafty " I get compliments on how nicely I

did it.

Good luck on your journey with plagio.

[Guest guest]

I would love to see pictures of how you decorated your daughter's STAR Band...I want to do something with my daughter's, but don't know what. -Shari Re: Looking for positive support from others

Welcome Regan:

You have found a great place for support. My daughter got

started in her Starband at almost 5mos old. It has never bothered her

and I can tell you that I credit the band to helping me be more at

ease as she learned to sit up on her on her own and now just about

3mos into the adventure she is crawling faster then any baby I have

ever seen and pulling herself up and trying to walk. I really think

in addition to getting her head nice and round it has helped me be

less nervous about her adventurous ways.

I know I cried for her and feared that it would be so hard for her

but she has never had a problem with sleeping or prgressing as any

other baby would. The only think I get out in public is remarks

about how cute she is. I also love little kids because they always

ask right out why she is wearing it and so I always thank them for

asking and tell them why and thier parents get the info as well.

's band has become such a part of our lives I really only

notice it when someone asks me about it. I bet you will feel the same

way in a few weeks.

I have also had fun with decorating it for the seasons and I have to

say despite not being very "crafty" I get compliments on how nicely I

did it.

Good luck on your journey with plagio.