Re: It's taking over my life!!!

August 22, 2006

I think it's totally normal. I went through the same thing except for me it was an obsession with both trying to "fix" my little one and trying to find a way to get the insurance company to pay for the helmet. I'm pretty much over it now that my daughter has graduated from the helmet (although her treatment certainly isn't over-- she'll still be in PT for awhile yet) and it seems pretty certain that our insurance won't pay. It did take over my life for awhile though and I wish it hadn't because I realize that I'm a lot happier when I'm just enjoying every minute with her to the fullest, which is doubly important when you have another child to think about (in my case this is my first). Anyway, I don't have any specific advice for you... if doing research makes you feel better or more in control of things then you should just do it and get it out of your system I guess. With time you'll get over it-- we all just love our kids so much and it's really hard to see them have any kind of illness or abnormality, but there are so many worse things than this that people struggle with every day. Hang in there!Alison

mom to Leila, born 9/25/05 (tort/plagio, STARband grad 6/5/06-8/14/06)Boynton Beach, FL

Plagiocephaly From: mommyluvset@...Date: Tue, 22 Aug 2006 16:52:33 +0000Subject: It's taking over my life!!!

Hey all. My little guy was diagnosed with tort and plagio last week and I am finding that it has completely taken over my life. I am consumed with trying to find ways to "fix" it before we have to band him... always on the internet researching, making appts... etc. I'm wondering if this is normal and what other people have done to get past it. I have a three year old that would really like some time with him mommy.....Candace, AZmommy to Tiernan, 3 mos.Tort, plagio Check the weather nationwide with MSN Search Try it now!

August 30, 2006

I think it's entirely normal, especially if the tort and plagio were caused

by uterine constraints.

I was, and have been, completely consumed by it. Treating

plagio/tort/hypotonia (low muscle tone) has taken over my life.

Remember treating tort and hypotonia is very different from treating plagio.

Not to dismiss plagio and the helmet, but the helmet is non-invasive and a

passive treatment. Yes, you have to clean the helmet daily and make sure

your child's head doesn't sweat buckets, but it's not the same as doing neck

exercises 5-10 times a day with a baby that shrieks. Tort and hypotonia can

be a constant battle and met with much resistance.

It's like you said, there are so many appointments, exercises, research,

etc. One day we had three appointments - Early Intervention assessor, ct,

pt. We went directly from ct to pt. I nearly dropped.

I don't know about you, but I felt terribly guilty and responsible for my

son's plagio/tort/hypotonia because it was due in utero. I know it wasn't

my fault but I couldn't help it feeling like I caused it.

To alleviate the guilt, anguish and pain I felt for causing the

plague/tort/hypotonia, I immersed myself in daily exercises with my son

Malcolm. And I mean immerse myself in exercises - I was did them day in and

out for hours on end for months. For me, it was the only way I saw his

conditions being treated.

In the end, it's been a blessing that I did do so many exercises with him

daily because my son Malcolm has thrived. Malcolm is now almost 10 months

and he's now sitting, pulling to standing, crawling on all fours, cruising,

and almost walking.

My advice is 1) educate yourself about plagio/tort/hypotonia as much as

possible; 2) read and post on the blogs for the conditions - you'll

find people who have it easier or worse than you so you don't feel alone; 3)

if the tort/hypotonia are moderate/severe, I'd suggest doing as many

exercises as possible; 4) be diligent about doing exercises, especially neck

exercises; 5) find ways to make the exercises simple and fun or at least

more palatable.

Malcolm was diagnosed with tort and plagio when he was five days old and

then with hypotonia when he was two months old. Initially the doctor

advised us to do 8-10 neck exercises a day when Malcolm was a month old.

This soon changed to doing a daily regime of neck, arm, leg, shoulder,

pelvic and tummy exercises. At times I spent 3-4 hours a day doing

exercises. Yes, I was obsessed with them. But I was determined to help my

son and treat his tort and hypotonia like yesterday.

Please don't despair with tort and hypotonia. Keep reminding yourself that

it is treatable and that it will take time to treat.

Once you see some results and improvements, you'll start to breathe a bit

easier. You'll get through this. Keep your chin up.

Good luck and best wishes

Carolyn in NYC

Mum to Malcolm - 9 mos - Doc band #2 6/9

It's taking over my life!!!

Hey all. My little guy was diagnosed with tort and plagio last week

and I am finding that it has completely taken over my life. I am

consumed with trying to find ways to " fix " it before we have to band

him... always on the internet researching, making appts... etc. I'm

wondering if this is normal and what other people have done to get

past it. I have a three year old that would really like some time

with him mommy.....

Candace, AZ

mommy to Tiernan, 3 mos.

Tort, plagio

For more plagio info

August 30, 2006

Thanks Carolyn. We have two appointments today- going straight from PT to a chiropractor who notoriously runs an hour late. I am not looking forward to this afternoon, but you do what you gotta do. I am getting a lot better about accepting that this is our life right now and that we all have to make a few adjustments. My oldest (Ethan) is getting to be a bit more understanding about all the time I have to spend with Tiernan, and I'm trying to involve him as much as I can. We haven't been told what caused his tort. There are a few possibilities; either in utero, from a spinal tap he had to have done at three weeks old, or the fact that I had ten doses of terbutaline during my pregnancy to prevent preterm labor. (Terb. has been known to cause brain damage in unborn children, a fact I wasn't aware of until just last week.) Either way, I feel awful. Maybe not so much that it's my fault (b/c

we don't know why this happened) but that my little baby is going through yet another difficulty and he's so young! We are now debating whether or not to push for a band b/c his ped thinks he doesn't need one. We are getting the same thing most of you have heard "He'll grow out of it on his own." We've been doing repo for almost three weeks now, so I am going to ask his pt to re-measure him today. If there hasn't been much improvement, I think I'll get a second opinion about banding him. I also bought him a bumbo seat (MUCH THANKS TO WHOEVER RECOMMENDED THAT) and hopefully that will help. In the mean time, we just keep on keeping on. That's about all I can do. This group has been a tremendous amount of support. I don't know what I would do without you all!! Candace, AZ mommy to Tiernan, 3.5 mos tort,

plagiocarolyn fox <cdfox@...> wrote: I think it's entirely normal, especially if the tort and plagio were causedby uterine constraints.I was, and have been, completely consumed by it. Treatingplagio/tort/hypotonia (low muscle tone) has taken over my life. Remember treating tort and hypotonia is very different from treating plagio.Not to dismiss plagio and the helmet, but the helmet is non-invasive and apassive treatment. Yes, you have to clean the helmet daily and make

sureyour child's head doesn't sweat buckets, but it's not the same as doing neckexercises 5-10 times a day with a baby that shrieks. Tort and hypotonia canbe a constant battle and met with much resistance.It's like you said, there are so many appointments, exercises, research,etc. One day we had three appointments - Early Intervention assessor, ct,pt. We went directly from ct to pt. I nearly dropped.I don't know about you, but I felt terribly guilty and responsible for myson's plagio/tort/hypotonia because it was due in utero. I know it wasn'tmy fault but I couldn't help it feeling like I caused it. To alleviate the guilt, anguish and pain I felt for causing theplague/tort/hypotonia, I immersed myself in daily exercises with my sonMalcolm. And I mean immerse myself in exercises - I was did them day in andout for hours on end for months. For me, it was the only way I saw hisconditions being

treated.In the end, it's been a blessing that I did do so many exercises with himdaily because my son Malcolm has thrived. Malcolm is now almost 10 monthsand he's now sitting, pulling to standing, crawling on all fours, cruising,and almost walking.My advice is 1) educate yourself about plagio/tort/hypotonia as much aspossible; 2) read and post on the blogs for the conditions - you'llfind people who have it easier or worse than you so you don't feel alone; 3)if the tort/hypotonia are moderate/severe, I'd suggest doing as manyexercises as possible; 4) be diligent about doing exercises, especially neckexercises; 5) find ways to make the exercises simple and fun or at leastmore palatable. Malcolm was diagnosed with tort and plagio when he was five days old andthen with hypotonia when he was two months old. Initially the doctoradvised us to do 8-10 neck exercises a day when Malcolm was a month

old.This soon changed to doing a daily regime of neck, arm, leg, shoulder,pelvic and tummy exercises. At times I spent 3-4 hours a day doingexercises. Yes, I was obsessed with them. But I was determined to help myson and treat his tort and hypotonia like yesterday.Please don't despair with tort and hypotonia. Keep reminding yourself thatit is treatable and that it will take time to treat.Once you see some results and improvements, you'll start to breathe a biteasier. You'll get through this. Keep your chin up.Good luck and best wishesCarolyn in NYCMum to Malcolm - 9 mos - Doc band #2 6/9-----Original Message-----From: Plagiocephaly [mailto:Plagiocephaly ]On Behalf Of mommyluvsetSent: Tuesday, August 22, 2006 12:53 PMPlagiocephaly Subject: It's taking over my life!!!Hey all. My little guy was diagnosed with tort and plagio last week and I am finding that it has completely taken over my life. I am consumed with trying to find ways to "fix" it before we have to band him... always on the internet researching, making appts... etc. I'm wondering if this is normal and what other people have done to get past it. I have a three year old that would really like some time with him mommy.....Candace, AZmommy to Tiernan, 3 mos.Tort, plagioFor more plagio info

August 30, 2006

Hi Candace,

We were in your shoes six months ago so I

have tips if you don’t mind on banding and dealing with a plagio/tort/hypotonia

baby.

Like you, we had differing opinions on

Malcolm’s plagio (as well as his tort and hypotonia but who’s

counting). One doctor said we should look into helmet therapy while

another said Malcolm’s head would “round out.” Malcolm’s

head was against my rib cage during the entire pregnancy, the bulk of his body

never moved, so I ask how would his head suddenly “round out?”

And yes, these peds were at the same practice! I was also told by a pt

that I was making my baby’s head flatter and the facial asymmetry worse,

believe it or not. Then I saw a top pediatric neurosurgeon who

specializes in plagio (we’re in NYC after all) and he reassured me about

banding and confirmed my thoughts on in utero cases.

Here’s my two cents on deciding to

band:

1) in utero cases are more intractable and

difficult to correct without medical intervention. Repo hardly works with

in utero cases even though doctors will suggest this to you. By all

means, try repo but don’t kill yourself with it.

2) try repo for 2-3 months, if you have

little or no improvement after 2-3 months then you might consider banding.

Remember, though, repo is much harder if

the baby has tort and/or flattening and facial asymmetry.

Take photos while trying repo from

different angles.

3) get a second opinion with ct and/or

neurosurgeon/cranial facial specialist

4) look at your baby’s head in a

mirror or photos from upside down. This may sound silly but when we

looked at ct’s photos upside down Malcolm’s head resembled a

parallelogram and the plagio was glaring.

5) go with your gut instincts and take

what the doctors say with a pinch of salt. If you are unhappy with your

baby’s head and honestly believe your baby’s head will improve with

banding, then don’t be nervous about banding.

6) if you decide on banding, try banding

as soon as possible. We banded Malcolm at 4 months and have seen

tremendous improvements. If we waited until after 7 or 8 months, I don’t

know if we would have seen such good correction, especially with the facial

asymmetry.

As for tort: try to recruit your older son

Ethan to sing, make funny faces, playing with a squeaky toy, or anything to

entertain and distract your son Tiernan while you’re doing the neck exercises.

I’m sure someone on the tort board can offer some other tips and

suggestions. If you’re struggling with the neck exercises though,

ct can show you an easier way to do them. I do them lying over Malcolm with

my face about six inches from him so he can’t squirm away. I then sing

songs, make noises, or anything I can think of to distract him.

Between pt/ot/ct, I know what it’s

like running from appt to appt. Malcolm’se had pt for 8 months –

twice a week. And yes, they usually run half an hour or an hour late.

He’s had ot for four months and now has it four times a week. Then

there’s the trip to ct for his helmet adjustment. Of course, throw

in the trips to the pediatrician, neurosurgeon, tort specialist, and any other

specialist (some babies see eye doctors, speech therapists, etc.) Oy Va!

As bad as they may seem at times, try to keep

the plagio/tort/hypotonia in perspective. These conditions are treatable;

they’re not life threatening. It’s not Down’s syndrome

or autism where the duration is life and much more serious and daunting.

Saying that, I strongly believe dealing

with plagio/tort/hypotonia makes you a much stronger person and mother!

Personally, I want to one day tell Malcolm that we did everything to treat his

conditions and exhausted all possibilities. I didn’t want to say

twenty years from now that we didn’t have the stomach to treat your

plagio when we could. I couldn’t live with myself. I also

read on the tort and hypotonia boards that it’s really the responsibility

of the parent to do the bulk of the exercises and monitor tort as left

untreated it cause a host of medical problems (ie. scoliosis).

If anything else, try to maintain a sense

of humor and laugh.

Keep your chin up.

Carolyn in NYC

Mum to Malcolm – 9 months –

Doc Band # 6/9

From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of Candace Mayer

Sent: Wednesday, August 30, 2006

10:37 AM

Plagiocephaly

Subject: RE: It's taking

over my life!!!

Thanks Carolyn. We have two appointments today- going straight

from PT to a chiropractor who notoriously runs an hour late. I am not

looking forward to this afternoon, but you do what you gotta do. I am

getting a lot better about accepting that this is our life right now and that

we all have to make a few adjustments. My oldest (Ethan) is getting to be

a bit more understanding about all the time I have to spend with Tiernan, and

I'm trying to involve him as much as I can.

We haven't been told what caused his tort. There are a few

possibilities; either in utero, from a spinal tap he had to have done at three

weeks old, or the fact that I had ten doses of terbutaline during my pregnancy

to prevent preterm labor. (Terb. has been known to cause brain damage in

unborn children, a fact I wasn't aware of until just last week.) Either

way, I feel awful. Maybe not so much that it's my fault (b/c we don't

know why this happened) but that my little baby is going through yet another difficulty

and he's so young!

We are now debating whether or not to push for a band b/c his ped

thinks he doesn't need one. We are getting the same thing most of you

have heard " He'll grow out of it on his own. " We've been doing

repo for almost three weeks now, so I am going to ask his pt to re-measure him

today. If there hasn't been much improvement, I think I'll get a second

opinion about banding him. I also bought him a bumbo seat (MUCH THANKS TO

WHOEVER RECOMMENDED THAT) and hopefully that will help.

In the mean time, we just keep on keeping on. That's about all I

can do. This group has been a tremendous amount of support. I don't

know what I would do without you all!!

Candace,

AZ

mommy to Tiernan, 3.5 mos

tort, plagio

carolyn fox <cdfox@...>

wrote:

I think it's entirely

normal, especially if the tort and plagio were caused

by uterine constraints.

I was, and have been, completely consumed by it. Treating

plagio/tort/hypotonia (low muscle tone) has taken over my life.

Remember treating tort and hypotonia is very different from treating plagio.

Not to dismiss plagio and the helmet, but the helmet is non-invasive and a

passive treatment. Yes, you have to clean the helmet daily and make sure

your child's head doesn't sweat buckets, but it's not the same as doing neck

exercises 5-10 times a day with a baby that shrieks. Tort and hypotonia can

be a constant battle and met with much resistance.

It's like you said, there are so many appointments, exercises, research,

etc. One day we had three appointments - Early Intervention assessor, ct,

pt. We went directly from ct to pt. I nearly dropped.

I don't know about you, but I felt terribly guilty and responsible for my

son's plagio/tort/hypotonia because it was due in utero. I know it wasn't

my fault but I couldn't help it feeling like I caused it.

To alleviate the guilt, anguish and pain I felt for causing the

plague/tort/hypotonia, I immersed myself in daily exercises with my son

Malcolm. And I mean immerse myself in exercises - I was did them day in and

out for hours on end for months. For me, it was the only way I saw his

conditions being treated.

In the end, it's been a blessing that I did do so many exercises with him

daily because my son Malcolm has thrived. Malcolm is now almost 10 months

and he's now sitting, pulling to standing, crawling on all fours, cruising,

and almost walking.

My advice is 1) educate yourself about plagio/tort/hypotonia as much as

possible; 2) read and post on the blogs for the conditions - you'll

find people who have it easier or worse than you so you don't feel alone; 3)

if the tort/hypotonia are moderate/severe, I'd suggest doing as many

exercises as possible; 4) be diligent about doing exercises, especially neck

exercises; 5) find ways to make the exercises simple and fun or at least

more palatable.

Malcolm was diagnosed with tort and plagio when he was five days old and

then with hypotonia when he was two months old. Initially the doctor

advised us to do 8-10 neck exercises a day when Malcolm was a month old.

This soon changed to doing a daily regime of neck, arm, leg, shoulder,

pelvic and tummy exercises. At times I spent 3-4 hours a day doing

exercises. Yes, I was obsessed with them. But I was determined to help my

son and treat his tort and hypotonia like yesterday.

Please don't despair with tort and hypotonia. Keep reminding yourself that

it is treatable and that it will take time to treat.

Once you see some results and improvements, you'll start to breathe a bit

easier. You'll get through this. Keep your chin up.

Good luck and best wishes

Carolyn in NYC

Mum to Malcolm - 9 mos - Doc band #2 6/9

It's taking over my life!!!

Hey all. My little guy was diagnosed with tort and plagio last week

and I am finding that it has completely taken over my life. I am

consumed with trying to find ways to " fix " it before we have to band

him... always on the internet researching, making appts... etc. I'm

wondering if this is normal and what other people have done to get

past it. I have a three year old that would really like some time

with him mommy.....

Candace, AZ

mommy to Tiernan, 3 mos.

Tort, plagio

For more plagio info

August 30, 2006

Carolyn, I agree with wanting to be able to say we did absolutely everything we could to correct it for him, that's why I am leaning more and more towards "fighting" our ped. to get him the band. It's so funny b/c I was so resistant to it when the pt first mentioned it, but as I read more emails from the group and have more time to think about it, the more I want to put him in one. In a wierd sort of way it seems kind of exciting. Is that bad? I am getting consultations with hanger and cranial tech, so we have started the process; I just need to get my ducks in a row to take to the ped and hopefully get an rx from her! Thanks for your advice. I know I"ve said it before, but I'm going to say it again. I don't know what I'd do without all of you! Candace, AZ mommy to Tiernan, 3.5 mos (tort and plagio) and Ethan 3 yrs.carolyn fox

<cdfox@...> wrote: Hi Candace, We were in your shoes six months ago so I have tips if you

don’t mind on banding and dealing with a plagio/tort/hypotonia baby. Like you, we had differing opinions on Malcolm’s plagio (as well as his tort and hypotonia but who’s counting). One doctor said we should look into helmet therapy while another said Malcolm’s head would “round out.” Malcolm’s head was against my rib cage during the entire pregnancy, the bulk of his body never moved, so I ask how would his head suddenly “round out?” And yes, these peds were at the same practice! I was also told by a pt that I was making my baby’s head flatter and the facial asymmetry worse, believe it or not. Then I saw a top pediatric neurosurgeon who

specializes in plagio (we’re in NYC after all) and he reassured me about banding and confirmed my thoughts on in utero cases. Here’s my two cents on deciding to band: 1) in utero cases are more intractable and difficult to correct without medical intervention. Repo hardly works with in utero cases even though doctors will suggest this to you. By all means, try repo but don’t kill yourself with it. 2) try repo for 2-3 months, if you have little or no improvement after 2-3 months then you might consider banding. Remember, though, repo is much harder if the baby has tort and/or flattening and facial asymmetry. Take photos while trying repo from different angles. 3) get a second opinion with ct and/or neurosurgeon/cranial facial specialist 4) look at your

baby’s head in a mirror or photos from upside down. This may sound silly but when we looked at ct’s photos upside down Malcolm’s head resembled a parallelogram and the plagio was glaring. 5) go with your gut instincts and take what the doctors say with a pinch of salt. If you are unhappy with your baby’s head and honestly believe your baby’s head will improve with banding, then don’t be nervous about banding. 6) if you decide on banding, try banding as soon as possible. We banded Malcolm at 4 months and have seen tremendous improvements. If we waited until after 7 or 8 months, I don’t know if we would have seen such good correction, especially with the facial

asymmetry. As for tort: try to recruit your older son Ethan to sing, make funny faces, playing with a squeaky toy, or anything to entertain and distract your son Tiernan while you’re doing the neck exercises. I’m sure someone on the tort board can offer some other tips and suggestions. If you’re struggling with the neck exercises though, ct can show you an easier way to do them. I do them lying over Malcolm with my face about six inches from him so he can’t squirm away. I then sing songs, make noises, or anything I can think of to distract him. Between pt/ot/ct, I know what it’s like running from appt to appt. Malcolm’se had pt for 8 months – twice a week. And yes, they usually run half an hour or an hour late. He’s had ot for four months and now has it four times a week. Then there’s the trip to ct for his helmet adjustment. Of course, throw in the trips to the pediatrician, neurosurgeon, tort specialist, and any other specialist (some babies see eye doctors, speech therapists, etc.) Oy Va! As bad as they may seem at times, try to keep the plagio/tort/hypotonia in perspective. These conditions are treatable; they’re not life threatening. It’s not Down’s syndrome or autism where the duration is life and much more serious and daunting. Saying that, I strongly believe dealing with plagio/tort/hypotonia makes you a much stronger person and mother! Personally, I want to one day tell Malcolm that we did everything to treat his conditions and exhausted all possibilities. I didn’t want to say twenty years from now that we didn’t have the stomach to treat your plagio when we could. I couldn’t live with

myself. I also read on the tort and hypotonia boards that it’s really the responsibility of the parent to do the bulk of the exercises and monitor tort as left untreated it cause a host of medical problems (ie. scoliosis). If anything else, try to maintain a sense of humor and laugh. Keep your chin up. Carolyn in NYC Mum to Malcolm – 9 months – Doc Band # 6/9 From: Plagiocephaly

[mailto:Plagiocephaly ] On Behalf Of Candace MayerSent: Wednesday, August 30, 2006 10:37 AMPlagiocephaly Subject: RE: It's taking over my life!!! Thanks Carolyn. We have two appointments today- going straight from PT to a chiropractor who notoriously runs an hour late. I am not looking forward to this afternoon, but you do what you gotta do. I am getting a lot better about accepting that this is our life right now and that we all have to

make a few adjustments. My oldest (Ethan) is getting to be a bit more understanding about all the time I have to spend with Tiernan, and I'm trying to involve him as much as I can. We haven't been told what caused his tort. There are a few possibilities; either in utero, from a spinal tap he had to have done at three weeks old, or the fact that I had ten doses of terbutaline during my pregnancy to prevent preterm labor. (Terb. has been known to cause brain damage in unborn children, a fact I wasn't aware of until just last week.) Either way, I feel awful. Maybe not so much that it's my fault (b/c we don't know why this happened) but that my little baby is going through yet another

difficulty and he's so young! We are now debating whether or not to push for a band b/c his ped thinks he doesn't need one. We are getting the same thing most of you have heard "He'll grow out of it on his own." We've been doing repo for almost three weeks now, so I am going to ask his pt to re-measure him today. If there hasn't been much improvement, I think I'll get a second opinion about banding him. I also bought him a bumbo seat (MUCH THANKS TO WHOEVER RECOMMENDED THAT) and hopefully that will help. In the mean time, we just keep on keeping on. That's about all I can do. This group has been a tremendous amount of support. I don't know what I would do without you all!! Candace, AZ mommy to Tiernan, 3.5 mos tort, plagiocarolyn fox

<cdfoxoptonline (DOT) net> wrote: I think it's entirely normal, especially if the tort and plagio were causedby uterine constraints.I was, and have been, completely consumed by it. Treatingplagio/tort/hypotonia (low muscle tone) has taken over my life. Remember treating tort and hypotonia is very different from treating plagio.Not to dismiss plagio and the helmet, but the helmet is non-invasive and apassive treatment. Yes, you have to clean the helmet daily and make sureyour child's head doesn't sweat buckets, but it's not the same as doing neckexercises 5-10 times a day with a baby that shrieks. Tort and hypotonia canbe a constant battle and met with much resistance.It's

like you said, there are so many appointments, exercises, research,etc. One day we had three appointments - Early Intervention assessor, ct,pt. We went directly from ct to pt. I nearly dropped.I don't know about you, but I felt terribly guilty and responsible for myson's plagio/tort/hypotonia because it was due in utero. I know it wasn'tmy fault but I couldn't help it feeling like I caused it. To alleviate the guilt, anguish and pain I felt for causing theplague/tort/hypotonia, I immersed myself in daily exercises with my sonMalcolm. And I mean immerse myself in exercises - I was did them day in andout for hours on end for months. For me, it was the only way I saw hisconditions being treated.In the end, it's been a blessing that I did do so many exercises with himdaily because my son Malcolm has thrived. Malcolm is now almost 10 monthsand he's now sitting, pulling to standing, crawling on all fours,

cruising,and almost walking.My advice is 1) educate yourself about plagio/tort/hypotonia as much aspossible; 2) read and post on the blogs for the conditions - you'llfind people who have it easier or worse than you so you don't feel alone; 3)if the tort/hypotonia are moderate/severe, I'd suggest doing as manyexercises as possible; 4) be diligent about doing exercises, especially neckexercises; 5) find ways to make the exercises simple and fun or at leastmore palatable. Malcolm was diagnosed with tort and plagio when he was five days old andthen with hypotonia when he was two months old. Initially the doctoradvised us to do 8-10 neck exercises a day when Malcolm was a month old.This soon changed to doing a daily regime of neck, arm, leg, shoulder,pelvic and tummy exercises. At times I spent 3-4 hours a day doingexercises. Yes, I was obsessed with them. But I was determined to help myson and treat

his tort and hypotonia like yesterday.Please don't despair with tort and hypotonia. Keep reminding yourself thatit is treatable and that it will take time to treat.Once you see some results and improvements, you'll start to breathe a biteasier. You'll get through this. Keep your chin up.Good luck and best wishesCarolyn in NYCMum to Malcolm - 9 mos - Doc band #2 6/9-----Original Message-----From: Plagiocephaly [mailto:Plagiocephaly ]On Behalf Of mommyluvsetSent: Tuesday, August 22, 2006 12:53 PMPlagiocephaly Subject: It's taking over my life!!!Hey all. My little guy was diagnosed with tort and plagio last week and I am finding that it has

completely taken over my life. I am consumed with trying to find ways to "fix" it before we have to band him... always on the internet researching, making appts... etc. I'm wondering if this is normal and what other people have done to get past it. I have a three year old that would really like some time with him mommy.....Candace, AZmommy to Tiernan, 3 mos.Tort, plagioFor more plagio info

August 30, 2006

candace where are you in az im in phoenix/ahwatukee we got a referal for pt and have been going to desert kidz and working with laura since march, she recommended we have a consult with ct. we had the consult and ct got in touch with our ped dr.chung for the rx. the first rx they got from her was just for a consult so they had to call her office and straighten everything out. simon has now been in his doc band for going on 8 weeks and is almost done only 3 more weeks to go and he is almost done with pt too =)

Aron Holwighttp://birds.lemonyfresh.com/gallery/http://b1.lilypie.com/2QXlm7.png

On 8/30/06, Candace Mayer <mommyluvset@...> wrote:

Carolyn, I agree with wanting to be able to say we did absolutely everything we could to correct it for him, that's why I am leaning more and more towards " fighting " our ped. to get him the band. It's so funny b/c I was so resistant to it when the pt first mentioned it, but as I read more emails from the group and have more time to think about it, the more I want to put him in one. In a wierd sort of way it seems kind of exciting. Is that bad? I am getting consultations with hanger and cranial tech, so we have started the process; I just need to get my ducks in a row to take to the ped and hopefully get an rx from her!

Thanks for your advice. I know I " ve said it before, but I'm going to say it again. I don't know what I'd do without all of you!

Candace, AZ

mommy to Tiernan, 3.5 mos (tort and plagio) and Ethan 3 yrs.

carolyn fox <cdfox@...> wrote:

Hi Candace,

We were in your shoes six months ago so I have tips if you don't mind on banding and dealing with a plagio/tort/hypotonia baby.

Like you, we had differing opinions on Malcolm's plagio (as well as his tort and hypotonia but who's counting). One doctor said we should look into helmet therapy while another said Malcolm's head would "round out." Malcolm's head was against my rib cage during the entire pregnancy, the bulk of his body never moved, so I ask how would his head suddenly "round out?" And yes, these peds were at the same practice! I was also told by a pt that I was making my baby's head flatter and the facial asymmetry worse, believe it or not. Then I saw a top pediatric neurosurgeon who specializes in plagio (we're in NYC after all) and he reassured me about banding and confirmed my thoughts on in utero cases.

Here's my two cents on deciding to band:

1) in utero cases are more intractable and difficult to correct without medical intervention. Repo hardly works with in utero cases even though doctors will suggest this to you. By all means, try repo but don't kill yourself with it.

2) try repo for 2-3 months, if you have little or no improvement after 2-3 months then you might consider banding.

Remember, though, repo is much harder if the baby has tort and/or flattening and facial asymmetry.

Take photos while trying repo from different angles.

3) get a second opinion with ct and/or neurosurgeon/cranial facial specialist

4) look at your baby's head in a mirror or photos from upside down. This may sound silly but when we looked at ct's photos upside down Malcolm's head resembled a parallelogram and the plagio was glaring.

5) go with your gut instincts and take what the doctors say with a pinch of salt. If you are unhappy with your baby's head and honestly believe your baby's head will improve with banding, then don't be nervous about banding.

6) if you decide on banding, try banding as soon as possible. We banded Malcolm at 4 months and have seen tremendous improvements. If we waited until after 7 or 8 months, I don't know if we would have seen such good correction, especially with the facial asymmetry.

As for tort: try to recruit your older son Ethan to sing, make funny faces, playing with a squeaky toy, or anything to entertain and distract your son Tiernan while you're doing the neck exercises. I'm sure someone on the tort board can offer some other tips and suggestions. If you're struggling with the neck exercises though, ct can show you an easier way to do them. I do them lying over Malcolm with my face about six inches from him so he can't squirm away. I then sing songs, make noises, or anything I can think of to distract him.

Between pt/ot/ct, I know what it's like running from appt to appt. Malcolm'se had pt for 8 months – twice a week. And yes, they usually run half an hour or an hour late. He's had ot for four months and now has it four times a week. Then there's the trip to ct for his helmet adjustment. Of course, throw in the trips to the pediatrician, neurosurgeon, tort specialist, and any other specialist (some babies see eye doctors, speech therapists, etc.) Oy Va!

As bad as they may seem at times, try to keep the plagio/tort/hypotonia in perspective. These conditions are treatable; they're not life threatening. It's not Down's syndrome or autism where the duration is life and much more serious and daunting.

Saying that, I strongly believe dealing with plagio/tort/hypotonia makes you a much stronger person and mother! Personally, I want to one day tell Malcolm that we did everything to treat his conditions and exhausted all possibilities. I didn't want to say twenty years from now that we didn't have the stomach to treat your plagio when we could. I couldn't live with myself. I also read on the tort and hypotonia boards that it's really the responsibility of the parent to do the bulk of the exercises and monitor tort as left untreated it cause a host of medical problems (ie. scoliosis).

If anything else, try to maintain a sense of humor and laugh.

Keep your chin up.

Carolyn in NYC

Mum to Malcolm – 9 months – Doc Band # 6/9

From:

Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of Candace Mayer

Sent: Wednesday, August 30, 2006 10:37 AMPlagiocephaly

Subject: RE: It's taking over my life!!!

Thanks Carolyn. We have two appointments today- going straight from PT to a chiropractor who notoriously runs an hour late. I am not looking forward to this afternoon, but you do what you gotta do. I am getting a lot better about accepting that this is our life right now and that we all have to make a few adjustments. My oldest (Ethan) is getting to be a bit more understanding about all the time I have to spend with Tiernan, and I'm trying to involve him as much as I can.

We haven't been told what caused his tort. There are a few possibilities; either in utero, from a spinal tap he had to have done at three weeks old, or the fact that I had ten doses of terbutaline during my pregnancy to prevent preterm labor. (Terb. has been known to cause brain damage in unborn children, a fact I wasn't aware of until just last week.) Either way, I feel awful. Maybe not so much that it's my fault (b/c we don't know why this happened) but that my little baby is going through yet another difficulty and he's so young!

We are now debating whether or not to push for a band b/c his ped thinks he doesn't need one. We are getting the same thing most of you have heard " He'll grow out of it on his own. " We've been doing repo for almost three weeks now, so I am going to ask his pt to re-measure him today. If there hasn't been much improvement, I think I'll get a second opinion about banding him. I also bought him a bumbo seat (MUCH THANKS TO WHOEVER RECOMMENDED THAT) and hopefully that will help.

In the mean time, we just keep on keeping on. That's about all I can do. This group has been a tremendous amount of support. I don't know what I would do without you all!!

Candace, AZ

mommy to Tiernan, 3.5 mos

tort, plagiocarolyn fox <cdfox@...

> wrote:

I think it's entirely normal, especially if the tort and plagio were causedby uterine constraints.I was, and have been, completely consumed by it. Treating

plagio/tort/hypotonia (low muscle tone) has taken over my life. Remember treating tort and hypotonia is very different from treating plagio.Not to dismiss plagio and the helmet, but the helmet is non-invasive and a

passive treatment. Yes, you have to clean the helmet daily and make sureyour child's head doesn't sweat buckets, but it's not the same as doing neckexercises 5-10 times a day with a baby that shrieks. Tort and hypotonia can

be a constant battle and met with much resistance.It's like you said, there are so many appointments, exercises, research,etc. One day we had three appointments - Early Intervention assessor, ct,pt. We went directly from ct to pt. I nearly dropped.

I don't know about you, but I felt terribly guilty and responsible for myson's plagio/tort/hypotonia because it was due in utero. I know it wasn'tmy fault but I couldn't help it feeling like I caused it.

To alleviate the guilt, anguish and pain I felt for causing theplague/tort/hypotonia, I immersed myself in daily exercises with my sonMalcolm. And I mean immerse myself in exercises - I was did them day in and

out for hours on end for months. For me, it was the only way I saw hisconditions being treated.In the end, it's been a blessing that I did do so many exercises with himdaily because my son Malcolm has thrived. Malcolm is now almost 10 months

and he's now sitting, pulling to standing, crawling on all fours, cruising,and almost walking.My advice is 1) educate yourself about plagio/tort/hypotonia as much aspossible; 2) read and post on the blogs for the conditions - you'll

find people who have it easier or worse than you so you don't feel alone; 3)if the tort/hypotonia are moderate/severe, I'd suggest doing as manyexercises as possible; 4) be diligent about doing exercises, especially neck

exercises; 5) find ways to make the exercises simple and fun or at leastmore palatable. Malcolm was diagnosed with tort and plagio when he was five days old andthen with hypotonia when he was two months old. Initially the doctor

advised us to do 8-10 neck exercises a day when Malcolm was a month old.This soon changed to doing a daily regime of neck, arm, leg, shoulder,pelvic and tummy exercises. At times I spent 3-4 hours a day doing

exercises. Yes, I was obsessed with them. But I was determined to help myson and treat his tort and hypotonia like yesterday.Please don't despair with tort and hypotonia. Keep reminding yourself thatit is treatable and that it will take time to treat.

Once you see some results and improvements, you'll start to breathe a biteasier. You'll get through this. Keep your chin up.Good luck and best wishesCarolyn in NYCMum to Malcolm - 9 mos - Doc band #2 6/9

-----Original Message-----From: Plagiocephaly [mailto:

Plagiocephaly ]On Behalf Of mommyluvsetSent: Tuesday, August 22, 2006 12:53 PM

Plagiocephaly Subject: It's taking over my life!!!Hey all. My little guy was diagnosed with tort and plagio last week and I am finding that it has completely taken over my life. I am consumed with trying to find ways to " fix " it before we have to band him... always on the internet researching, making appts... etc. I'm wondering if this is normal and what other people have done to get past it. I have a three year old that would really like some time with him mommy.....Candace, AZmommy to Tiernan, 3 mos.Tort, plagioFor more plagio info, go to

www.plagiocephaly.org/support

August 31, 2006

I'm actually in Catalina, near Tucson. I am going to be calling CT this morning to schedule a consult. The only one is in Phoenix, but it may be worth the drive. I am going forward with consultations and will deal with our ped later. I am pretty much 100% on getting the band at this point. That's exciting that Simon is almost done. I bet the next three weeks will absolutely fly by! Candace, AZmommy to Tiernan 3.5 mos, tort plagioaron holwig <pezzy777@...> wrote: candace where are you in az im in phoenix/ahwatukee we got a referal for pt and have been going to desert kidz and working with laura since march, she recommended we have a consult with ct. we had the consult and ct got in touch with our ped dr.chung for the rx. the first rx they got from her was just for a consult so they had to call her office and straighten everything out. simon has now been in his doc band for going on 8 weeks and is almost done only 3 more weeks to go and he is almost done with pt too =) Aron Holwighttp://birds.lemonyfresh.com/gallery/http://b1.lilypie.com/2QXlm7.png On 8/30/06, Candace Mayer <mommyluvset > wrote: Carolyn, I agree with wanting to be able to say we did absolutely everything we could to correct it for him, that's why I am leaning more and more towards "fighting" our ped. to get him the band. It's so funny b/c I was so resistant to it when the pt first mentioned it, but as I read more emails from the group and have more time to think about it, the more I want to put him in one. In a wierd sort of way it seems kind of exciting. Is that bad? I am getting consultations with hanger and cranial tech, so we have started the process; I just need to get my ducks in a row to take to the ped and hopefully get an rx from her! Thanks for your advice. I know I"ve said it before, but

I'm going to say it again. I don't know what I'd do without all of you! Candace, AZ mommy to Tiernan, 3.5 mos (tort and plagio) and Ethan 3 yrs. carolyn fox <cdfoxoptonline (DOT) net> wrote: Hi Candace, We were in your shoes six months ago so I have tips if you don't mind on banding and dealing with a

plagio/tort/hypotonia baby. Like you, we had differing opinions on Malcolm's plagio (as well as his tort and hypotonia but who's counting). One doctor said we should look into helmet therapy while another said Malcolm's head would "round out." Malcolm's head was against my rib cage during the entire pregnancy, the bulk of his body never moved, so I ask how would his head suddenly "round out?" And yes, these peds were at the same practice! I was also told by a pt that I was making my baby's head flatter and the facial asymmetry worse, believe it or not. Then I saw a top pediatric neurosurgeon who specializes in plagio (we're in NYC after all) and he reassured me about banding and

confirmed my thoughts on in utero cases. Here's my two cents on deciding to band: 1) in utero cases are more intractable and difficult to correct without medical intervention. Repo hardly works with in utero cases even though doctors will suggest this to you. By all means, try repo but don't kill yourself with it. 2) try repo for 2-3 months, if you have little or no improvement after 2-3 months then you might consider banding. Remember, though, repo is much harder if the baby has tort and/or flattening and facial asymmetry. Take photos while trying repo from different angles. 3) get a second opinion with ct and/or neurosurgeon/cranial facial specialist 4) look at your baby's head in a mirror or photos from upside down. This may sound silly but when we looked at ct's photos upside down Malcolm's head resembled a parallelogram and the plagio was glaring. 5) go with your gut instincts and take what the doctors say with a pinch of salt. If you are unhappy with your baby's head and honestly believe your baby's head will improve with banding, then don't be nervous about banding. 6) if you decide on banding, try banding as soon as possible. We banded Malcolm at 4 months and have seen tremendous improvements. If we waited until after 7 or 8 months, I don't know if we would have seen such good correction, especially with the facial asymmetry. As for tort: try to recruit your older son

Ethan to sing, make funny faces, playing with a squeaky toy, or anything to entertain and distract your son Tiernan while you're doing the neck exercises. I'm sure someone on the tort board can offer some other tips and suggestions. If you're struggling with the neck exercises though, ct can show you an easier way to do them. I do them lying over Malcolm with my face about six inches from him so he can't squirm away. I then sing songs, make noises, or anything I can think of to distract him. Between pt/ot/ct, I know what it's like running from appt to appt. Malcolm'se had pt for 8 months – twice a week. And yes, they usually run half an hour or an hour late. He's had ot for four months

and now has it four times a week. Then there's the trip to ct for his helmet adjustment. Of course, throw in the trips to the pediatrician, neurosurgeon, tort specialist, and any other specialist (some babies see eye doctors, speech therapists, etc.) Oy Va! As bad as they may seem at times, try to keep the plagio/tort/hypotonia in perspective. These conditions are treatable; they're not life threatening. It's not Down's syndrome or autism where the duration is life and much more serious and daunting. Saying that, I strongly believe dealing with plagio/tort/hypotonia makes you a much stronger person and mother! Personally, I want to one day tell Malcolm that we did everything to treat his conditions and exhausted all possibilities. I didn't want to say twenty years from now that we didn't have the stomach to treat your plagio when we could. I couldn't live with myself. I also read on the tort and hypotonia boards that it's really the responsibility of the parent to do the bulk of the exercises and monitor tort as left untreated it cause a host of medical problems (ie. scoliosis). If anything else, try to maintain a sense of

humor and laugh. Keep your chin up. Carolyn in NYC Mum to Malcolm – 9 months – Doc Band # 6/9 From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of Candace MayerSent: Wednesday, August 30, 2006 10:37 AMPlagiocephaly Subject: RE: It's taking over my life!!! Thanks Carolyn. We have two appointments

today- going straight from PT to a chiropractor who notoriously runs an hour late. I am not looking forward to this afternoon, but you do what you gotta do. I am getting a lot better about accepting that this is our life right now and that we all have to make a few adjustments. My oldest (Ethan) is getting to be a bit more understanding about all the time I have to spend with Tiernan, and I'm trying to involve him as much as I can. We haven't been told what caused his tort. There are a few possibilities; either in utero, from a spinal tap he had to have done at three weeks old, or the fact that I had ten doses of terbutaline during my pregnancy to prevent preterm labor. (Terb. has been known to cause brain damage in unborn

children, a fact I wasn't aware of until just last week.) Either way, I feel awful. Maybe not so much that it's my fault (b/c we don't know why this happened) but that my little baby is going through yet another difficulty and he's so young! We are now debating whether or not to push for a band b/c his ped thinks he doesn't need one. We are getting the same thing most of you have heard "He'll grow out of it on his own." We've been doing repo for almost three weeks now, so I am going to ask his pt to re-measure him today. If there hasn't been much improvement, I think I'll get a second opinion about banding him. I also bought him a bumbo seat (MUCH THANKS TO WHOEVER RECOMMENDED THAT) and hopefully that will help.

In the mean time, we just keep on keeping on. That's about all I can do. This group has been a tremendous amount of support. I don't know what I would do without you all!! Candace, AZ mommy to Tiernan, 3.5 mos tort, plagiocarolyn fox <cdfoxoptonline (DOT) net > wrote: I think it's entirely normal, especially if the tort and plagio were causedby uterine constraints.I was, and have been, completely consumed by it. Treating plagio/tort/hypotonia (low muscle tone) has taken over my life. Remember treating tort and hypotonia is very different from treating plagio.Not to dismiss plagio and the helmet, but the helmet is non-invasive and a passive treatment. Yes, you have to clean the helmet daily and make sureyour child's head doesn't sweat buckets, but it's not the same as doing neckexercises 5-10 times a day with a baby that shrieks. Tort and hypotonia can be a constant battle and met with much resistance.It's like you said, there

are so many appointments, exercises, research,etc. One day we had three appointments - Early Intervention assessor, ct,pt. We went directly from ct to pt. I nearly dropped. I don't know about you, but I felt terribly guilty and responsible for myson's plagio/tort/hypotonia because it was due in utero. I know it wasn'tmy fault but I couldn't help it feeling like I caused it. To alleviate the guilt, anguish and pain I felt for causing theplague/tort/hypotonia, I immersed myself in daily exercises with my sonMalcolm. And I mean immerse myself in exercises - I was did them day in and out for hours on end for months. For me, it was the only way I saw hisconditions being treated.In the end, it's been a blessing that I did do so many exercises with himdaily because my son Malcolm has thrived. Malcolm is now almost 10 months and he's now sitting, pulling to standing, crawling on all fours, cruising,and

almost walking.My advice is 1) educate yourself about plagio/tort/hypotonia as much aspossible; 2) read and post on the blogs for the conditions - you'll find people who have it easier or worse than you so you don't feel alone; 3)if the tort/hypotonia are moderate/severe, I'd suggest doing as manyexercises as possible; 4) be diligent about doing exercises, especially neck exercises; 5) find ways to make the exercises simple and fun or at leastmore palatable. Malcolm was diagnosed with tort and plagio when he was five days old andthen with hypotonia when he was two months old. Initially the doctor advised us to do 8-10 neck exercises a day when Malcolm was a month old.This soon changed to doing a daily regime of neck, arm, leg, shoulder,pelvic and tummy exercises. At times I spent 3-4 hours a day doingexercises. Yes, I was obsessed with them. But I was determined to help myson and treat his tort and

hypotonia like yesterday.Please don't despair with tort and hypotonia. Keep reminding yourself thatit is treatable and that it will take time to treat. Once you see some results and improvements, you'll start to breathe a biteasier. You'll get through this. Keep your chin up.Good luck and best wishesCarolyn in NYCMum to Malcolm - 9 mos - Doc band #2 6/9 -----Original Message-----From: Plagiocephaly [mailto: Plagiocephaly ]On Behalf Of mommyluvsetSent: Tuesday, August 22, 2006 12:53 PMPlagiocephaly Subject: It's taking over my life!!!Hey all. My little guy was diagnosed with tort and plagio last week and I

am finding that it has completely taken over my life. I am consumed with trying to find ways to "fix" it before we have to band him... always on the internet researching, making appts... etc. I'm wondering if this is normal and what other people have done to get past it. I have a three year old that would really like some time with him mommy.....Candace, AZmommy to Tiernan, 3 mos.Tort, plagioFor more plagio info

August 31, 2006