Introduction

[Guest guest]

In a message dated 7/22/00 7:15:25 PM Central Daylight Time,

amy@... writes:

<< I had no idea until I looked at

all of your pictures that there were so many different kinds of helmets. Is

there any one kind that is better? Why is one type used over the other?

Thanks!

Amy >>

Be happy about getting a referral for treatment. That is a big step forward.

Congratulations.

Each helmet maker makes their own. The only universal one is the DOC Band. <

A

HREF= " http://search.aol.com/redirect.adp?appname=QBP & query=%60%9a%5d%68%46%3a%

79%ed%fd%a2%7b%cf%71%2a%24%55%01%41%62%f1%b6%28%7f%a2%e2%4a%cf%c7%56%e1%9d%48%

36%68%44%b8%6c%7a%c4%1c%02%99%ec%9f%b0%df%53%3b%5b%9c%25%f4%d2%99%0c%c8%86%1b%

c1%f6%f4%27%17%fc%bc%86%a5%88%18%b2%4c%9a%d1%ac%c1%a2%57%ce%7e%61 " >Cranial

Technologies, Inc., Manufacturer of the DOC Band for Positional Plagioc</A>

Here is their web site. They have clinics all over but the actual band made

in Arizona. So styles can vary. Would be a good idea to see what kind of

helmet your locals make and maybe you'll have some different options and

makes. We had a local maker but due to the FDA thing would not make one so

we drive 5 hours round trip every week to Madison, WI for the DOC Band.

Tammy & 12/8/99

[Guest guest]

In a message dated 7/22/00 5:15:27 PM Pacific Daylight Time,

amy@... writes:

<< Everyone (including our

last pediatrician-we changed) said not to worry, that his head would round

out on its own when started sitting up and crawling and such >>

Amy, Welcome to the group. Many of us have heard this same story!! We

ended up changing peds also. My son is 10mos old. He has been in

helmet/PT since Jan. He also has torticollis and was unable to turn to the

left. That is what caused his plagio. No matter how we positioned him he

could not turn. We have seen great improvement but his ears are still a bit

off. This is becoming very common and I think more and more people are

finally hearing about the problem. Where are you from???

Belinda(Indiana)

[Guest guest]

Thanks for your post! I've looked at the Cranial Technologies web site since my post, and have read a lot about the DOC band. It does seem to be the preferred, particularly since it is the only one approved by the FDA. Surely other helmets will be approved soon, won't they?

We are in Cincinnati, and it doesn't look like there is a location around here, so we will probably have to travel, too. Our appointment is on Tuesday, so I guess I'll find out more then.

Amy & (3/22/00)

< Would be a good idea to see what kind of helmet your locals make and maybe you'll have some different options and makes. We had a local maker but due to the FDA thing would not make one so we drive 5 hours round trip every week to Madison, WI for the DOC Band. Tammy & 12/8/99 >

[Guest guest]

< Amy, Welcome to the group.

Where are you from??? Belinda(Indiana >

Thanks! I'm from the Cincinnati area (Mason, to be exact) I am so glad I found this group!

Amy

[Guest guest]

Hi Amy welcome to the group. What an adorable little boy you have. My

son 's head looks similar to s but not quite as flat. He

is 7 months old now. The ped mentioned at his 4-month visit that he may

need a helmet and at his 6 month visit suggested we see a specialist. So

we are going on Aug. 2 for a second opinion. If they think he needs

it,we will definately do it-but my husband doesn't think he needs it so

if the doctor leaves it up to us I don't know what we will do. I'm glad

you found the group.

and (12/17/99)

[Guest guest]

Thanks! I've learned so much just from reading the back posts!

The more I learn, the more I am convinced that should have this done, and as soon as possible. I'm so glad that my husband agrees, and that we have the support of our pediatrician. Now, the insurance, on the other hand, I am a little worried about. (we have CIGNA) Also, my husband's employer, (Delta Air Lines) is changing from CIGNA to United Healthcare at the end of this year, and I hope this doesn't complicate matters further!

Well, good luck with your decision!

Amy

< Hi Amy welcome to the group. What an adorable little boy you have. Myson 's head looks similar to s but not quite as flat. Heis 7 months old now. The ped mentioned at his 4-month visit that he mayneed a helmet and at his 6 month visit suggested we see a specialist. Sowe are going on Aug. 2 for a second opinion. If they think he needsit,we will definately do it-but my husband doesn't think he needs it soif the doctor leaves it up to us I don't know what we will do. I'm gladyou found the group. and (12/17/99)

[Guest guest]

Amy,

I'm pretty new to this group. My son Evan is 8 months old. We are going

to get his cranial molding helmet on August 3rd. We are in a small town in

northern Ohio and we are going through the Cleveland Clinic for Evan's

treatment. I know there are other people in the group from Ohio - even

some from Cincinnati (check the database) so you might want to try to find

out where they are going for treatment. The Cleveland Clinic is a

wonderful place. We are not thrilled with Evan's plastic surgeon there but

the orthotics/prosthetics people are just great! They are giving us all

the time, attention, etc. that we need (that the plastic surgeon is not

giving us!). I feel like Evan will be getting excellent care.

It does seem that most people use the DOC bands. At the Clinic, the

helmet is the only option and we are comfortable with that.

Good luck!

Sharon

> Thanks for your post! I've looked at the Cranial Technologies web

>site since my post, and have read a lot about the DOC band. It does seem

>to be the preferred, particularly since it is the only one approved by

>the FDA. Surely other helmets will be approved soon, won't they? We are

>in Cincinnati, and it doesn't look like there is a location around here,

>so we will probably have to travel, too. Our appointment is on Tuesday,

>so I guess I'll find out more then. Amy & (3/22/00)

>

> < Would be a good idea to see what kind of

>

>helmet your locals make and maybe you'll have some different options and

>

>makes. We had a local maker but due to the FDA thing would not make

> one so

>we drive 5 hours round trip every week to Madison, WI for the DOC

> Band.

>

>Tammy & 12/8/99 >

>

>

>

>

>

>

>

[Guest guest]

> Hi. I just found this list today, and I'm so glad! My son just had

his 4

> month checkup, and our pediatrician recommended that he be fitted

for a

> helmet due to his flat head. She says that she is usually the last

to

> recommend this, but she felt that his was pretty severe.

>

> I have been doing a lot of reading up on this condition, and now I

feel just

> terrible knowing that I could have prevented this! Everyone

(including our

> last pediatrician-we changed) said not to worry, that his head

would round

> out on its own when started sitting up and crawling and

such.

>

> I've attached a photo I snapped of him while ago. At his 2-month

visit, the

> (old) pediatrician noticed that his flat spot was more to the

right, and

> suggested that we try re-positioning him so that he would lie on

his left

> side more. Well, we did that, and now he is just pretty evenly flat,

> although it is still more to the right.

>

> Anyway, sorry such a long post, but I am happy to know that you all

are

> here! We are in the process of finding out if insurance will cover

this, and

> getting an appointment with a specialist. I had no idea until I

looked at

> all of your pictures that there were so many different kinds of

helmets. Is

> there any one kind that is better? Why is one type used over the

other?

>

> Thanks!

> Amy

> (b. 3/22/00)

Hi Amy I also just found this list today. My son is 6 months old and

from the time he was born his head was flatter on one side than the

other. Our ped said they would watch it but it should round out. At

his four month checkup our ped referred us to a neurologist. No one

ever told us to reposition him so I feel like maybe if we had his

head wouldn't be so flat. We didn't end up seeing the neurologist

until about 4 weeks later and when we did see him he prescribed the

DOC band (they have a website: www.cranialtechnologies.com ) but also

ordered a CAT scan to see if Colin's sutures were still open. The CAT

scan showed his sutures still open (if they were closed the helmet

would not help). We then went to Cranial Technologies to have him

fitted for his DOC band. The people there are great. He has been in

it for 2 weeks now and is doing great. I'm not sure if I can tell a

difference yet but I've only heard great things about it. We were

never given any other option besides the DOC band so I'm not sure the

difference. I think they all basically work the same way. As of

right now our insurance refuses to pay for it saying it is

investigative. We plan on appealing but we weren't going to waste

time waiting until our insurance company agreed to pay. Sorry this is

so long but I hope it helps. (mom to Colin 6months)

[Guest guest]

:

Welcome to the group! Make sure you check both the "files" section

and the "links" section for great references for your insurance appeal!!

Kendra

jimjenoc@... wrote:

--- In Plagiocephalyegroups, Amy Sims <amy@s...>

wrote:

> Hi. I just found this list today, and I'm so glad! My son just

had

his 4

> month checkup, and our pediatrician recommended that he be fitted

for a

> helmet due to his flat head. She says that she is usually the

last

to

> recommend this, but she felt that his was pretty severe.

>

> I have been doing a lot of reading up on this condition, and

now I

feel just

> terrible knowing that I could have prevented this! Everyone

(including our

> last pediatrician-we changed) said not to worry, that his head

would round

> out on its own when started sitting up and crawling

and

such.

>

> I've attached a photo I snapped of him while ago. At his 2-month

visit, the

> (old) pediatrician noticed that his flat spot was more to the

right, and

> suggested that we try re-positioning him so that he would lie

on

his left

> side more. Well, we did that, and now he is just pretty evenly

flat,

> although it is still more to the right.

>

> Anyway, sorry such a long post, but I am happy to know that you

all

are

> here! We are in the process of finding out if insurance will

cover

this, and

> getting an appointment with a specialist. I had no idea until

I

looked at

> all of your pictures that there were so many different kinds

of

helmets. Is

> there any one kind that is better? Why is one type used over

the

other?

>

> Thanks!

> Amy

> (b. 3/22/00)

Hi Amy I also just found this list today. My son is 6 months old

and

from the time he was born his head was flatter on one side than

the

other. Our ped said they would watch it but it should round

out. At

his four month checkup our ped referred us to a neurologist. No

one

ever told us to reposition him so I feel like maybe if we had his

head wouldn't be so flat. We didn't end up seeing the neurologist

until about 4 weeks later and when we did see him he prescribed

the

DOC band (they have a website: www.cranialtechnologies.com ) but

also

ordered a CAT scan to see if Colin's sutures were still open. The

CAT

scan showed his sutures still open (if they were closed the helmet

would not help). We then went to Cranial Technologies to have him

fitted for his DOC band. The people there are great.

He has been in

it for 2 weeks now and is doing great. I'm not sure if I can tell

a

difference yet but I've only heard great things about it.

We were

never given any other option besides the DOC band so I'm not sure

the

difference. I think they all basically work the same way.

As of

right now our insurance refuses to pay for it saying it is

investigative. We plan on appealing but we weren't going

to waste

time waiting until our insurance company agreed to pay. Sorry this

is

so long but I hope it helps. (mom to Colin 6months)

[Guest guest]

HI, Amy.

I had a very similar experience to . We asked our pediatrician about

our daughter's head at her 4-month visit and she recommended the Helmet Clinic

here in Omaha. We had a plastic surgeon, who did graduate work with the

helmets, evaluate her. He just looked at and said she has plagiocephaly.

We made an appointment to have the plaster cast made right away, and 's

been wearing the helmet for 1 1/2 weeks. We can already see part of her head

starting to round out, although we were told not to get too excited about it

yet. (The OTR who made the helmet was surprised by the change, though!)

We didn't bother waiting to see if insurance covers it, either, but fortunately

we can afford the helmet if it doesn't.

Also, we were never told about the DOC bands, most likely because there aren't

any sites here. I only found out about them after coming across Cranial

Technologies website.

Good luck with whatever you choose to do!

[Guest guest]

Amy & all members of the group.

Hi! My name is & I'm new to the group. My daughter

starting wearing a helmet on July 5, 2000 & unfortunately United Health Care

will not pay the costs of the helmet. They have covered the x-rays & all of

the doctor visits except for the co payments. Since, the doc bands were not

available in our area ( St Louis) & the specialist we saw here has very good

results with helmets we went ahead & paid for the helmet ourself.

Until now I have just been reading the e-mails & have learned so much

from everyone's communication. This is a valuable support group & I wish I

would have found it sooner. was born 11/11/99 so she was almost 8

months before beginning helmet treatment. I hope that we still see results

even thought we are starting so late.

Good Luck,

&

[Guest guest]

-

Just wanted to let you know that even though is starting at 8 months, you

should still see some improvement. They say anytime before a year is good. My

daughter started at almost 6 months. She's been wearing her helmet for

about 1 1/2 weeks, and we're already seeing a change!

Good luck to you!

[Guest guest]

Thanks, . That's is so great that you are seeing improvement so quickly!

We are definitely prepared to pay for this, too, but I sure hope that insurance will cover it. I am so anxious for our appointment tomorrow, and to find out more information. I'm sure I won't sleep a wink tonight.

Amy

< 's been wearing the helmet for 1 1/2 weeks. We can already see part of her head starting to round out, although we were told not to get too excited about it yet. (The OTR who made the helmet was surprised by the change, though!)We didn't bother waiting to see if insurance covers it, either, but fortunately we can afford the helmet if it doesn't >

[Guest guest]

,

I know what you mean about feeling guilty about repositioning. We knew 's head was flat on the right side, so we started repositioning him on his left. Well, it did even it out a lot, and now the whole back of his head is flat! Plus, now he wiggles around so much in his sleep, it is impossible to try to position him at night.

That is great that you have been able to get Colin in a band at 6 months. Everything I read says that the earlier the better. Good luck!

Amy

< Hi Amy I also just found this list today. My son is 6 months old and from the time he was born his head was flatter on one side than the other. Our ped said they would watch it but it should round out. At his four month checkup our ped referred us to a neurologist. No one ever told us to reposition him so I feel like maybe if we had his head wouldn't be so flat. We didn't end up seeing the neurologist until about 4 weeks later and when we did see him he prescribed the DOC band (they have a website: www.cranialtechnologies.com ) but also ordered a CAT scan to see if Colin's sutures were still open. The CAT scan showed his sutures still open (if they were closed the helmet would not help). We then went to Cranial Technologies to have him fitted for his DOC band. The people there are great. He has been in it for 2 weeks now and is doing great. I'm not sure if I can tell a difference yet but I've only heard great things about it. We were never given any other option besides the DOC band so I'm not sure the difference. I think they all basically work the same way. As of right now our insurance refuses to pay for it saying it is investigative. We plan on appealing but we weren't going to waste time waiting until our insurance company agreed to pay. Sorry this is so long but I hope it helps. (mom to Colin 6months) >

[Guest guest]

Sharon,

What kind of clinic is the Cleveland Clinic? ( I might want to mention it to the specialist I see tomorrow or our pediatrician)

It seems that Chicago is the closest Cranial Tech clinic. But, my family is in Dallas, pretty close to the clinic there, so that might be a better option. (place to stay, someone to pick us up from the airport, etc!)

Or, maybe we can get a helmet here in town. Hopefully I will get a lot of questions answered at our appointment tomorrow!

Good luck with Evan's treatment!

Amy

< Amy,I'm pretty new to this group. My son Evan is 8 months old. We are goingto get his cranial molding helmet on August 3rd. We are in a small town innorthern Ohio and we are going through the Cleveland Clinic for Evan'streatment. I know there are other people in the group from Ohio - evensome from Cincinnati (check the database) so you might want to try to findout where they are going for treatment. The Cleveland Clinic is awonderful place. We are not thrilled with Evan's plastic surgeon there butthe orthotics/prosthetics people are just great! They are giving us allthe time, attention, etc. that we need (that the plastic surgeon is notgiving us!). I feel like Evan will be getting excellent care.It does seem that most people use the DOC bands. At the Clinic, thehelmet is the only option and we are comfortable with that.Good luck!Sharon >

[Guest guest]

Amy, The Cleveland Clinic is this incredibly huge medical facility with

specialists in just about every field you can imagine. The Clinic's campus

takes up many city blocks in Cleveland. In some specialties, the Cleveland

Clinic is world-renowned. If you want more info on them, they can be found

at http://www.clevelandclinic.com. They do have some great pediatric

specialists there. Again, I've not been thrilled with the plastic surgeon

but am very very happy with the orthotics department. It sounds like you

are leaning towards getting a DOC band through CT, in which case, the

Cleveland Clinic won't be of any help to you! Good luck with whatever you

decide!

Sharon

> Sharon, What kind of clinic is the Cleveland Clinic? ( I

>might want to mention it to the specialist I see tomorrow or our

>pediatrician) It seems that Chicago is the closest Cranial Tech

>clinic. But, my family is in Dallas, pretty close to the clinic

>there, so that might be a better option. (place to stay, someone to pick

>us up from the airport, etc!) Or, maybe we can get a helmet here in

>town. Hopefully I will get a lot of questions answered at our appointment

>tomorrow! Good luck with Evan's treatment! Amy

> < Amy,

>I'm pretty new to this

> group. My son Evan is 8 months old. We are going

>to get his

> cranial molding helmet on August 3rd. We are in a small town

> in

>northern Ohio and we are going through the Cleveland Clinic for

> Evan's

>treatment. I know there are other people in the group from

> Ohio - even

>some from Cincinnati (check the database) so you might want to

> try to find

>out where they are going for treatment. The Cleveland

> Clinic is a

>wonderful place. We are not thrilled with Evan's plastic

> surgeon there but

>the orthotics/prosthetics people are just great!

> They are giving us all

>the time, attention, etc. that we need (that the

> plastic surgeon is not

>giving us!). I feel like Evan will be

> getting excellent care.

>

>It does seem that most people use the DOC

> bands. At the Clinic, the

>helmet is the only option and we are

> comfortable with that.

>Good luck!

>Sharon >

>

>

>

>

>

>

>

[Guest guest]

Amy

I was unable to open your photo, and I don't know why. But maybe you could try putting it in the files at the web site. As I like to compare photo's. Also just love to look at everyones precious little ones. My son Gunner has some pictures under a folder named Gunner in the Files. Today was a tough day, but be strong you can handle this! Just give your little a hug and kiss and it should help you to feel better. Gunner always brightens my days.

----- Original Message -----

From: Amy Sims

'Plagiocephalyegroups'

Sent: Saturday, July 22, 2000 7:12 PM

Subject: Introduction

Hi. I just found this list today, and I'm so glad! My son just had his 4 month checkup, and our pediatrician recommended that he be fitted for a helmet due to his flat head. She says that she is usually the last to recommend this, but she felt that his was pretty severe.

I have been doing a lot of reading up on this condition, and now I feel just terrible knowing that I could have prevented this! Everyone (including our last pediatrician-we changed) said not to worry, that his head would round out on its own when started sitting up and crawling and such.

I've attached a photo I snapped of him while ago. At his 2-month visit, the (old) pediatrician noticed that his flat spot was more to the right, and suggested that we try re-positioning him so that he would lie on his left side more. Well, we did that, and now he is just pretty evenly flat, although it is still more to the right.

Anyway, sorry such a long post, but I am happy to know that you all are here! We are in the process of finding out if insurance will cover this, and getting an appointment with a specialist. I had no idea until I looked at all of your pictures that there were so many different kinds of helmets. Is there any one kind that is better? Why is one type used over the other?

Thanks!Amy (b. 3/22/00)

[Guest guest]

,

Thanks for your replies! I think my husband and I have decided to go with the DOC band, regardless of whether insurance will cover. I just got off the phone with the Dallas CT office, and they were so helpful. I will talk to the pediatrician today about getting a script for the DOC band. My parents are going to be so thrilled that they will get to see so much!

I am getting some photos back from the lab today, so I will post them in the Files area later on.

Amy

< I was unable to open your photo, and I don't know why. But maybe you could try putting it in the files at the web site. As I like to compare photo's. Also just love to look at everyones precious little ones. My son Gunner has some pictures under a folder named Gunner in the Files. Today was a tough day, but be strong you can handle this! Just give your little a hug and kiss and it should help you to feel better. Gunner always brightens my days >

[Guest guest]

Welcome to the family !

I'm 41, diagnosed at 5 with CMT Type 2, many family members affected. I

have 3 daughters and one has been diagnosed (she is now 10, was diagnosed at

4).

This is a great place to share opinion and experience on CMT.

Cheers,

Ruth

----------------------------------------------------------

>From: " Weiss " <brenda_c_w@...>

>Reply-egroups

><egroups>

>Subject: [] Introduction

>Date: Sat, 30 Sep 2000 14:38:04 -0500

>

>Hi, I'm . I'm 46 married and have children. I found out about my

>CMT in 1982, but only started having problems 3 years ago. It began with

>my feet bothering me all the time no matter what type of shoes I wore.

>Then I noticed that my left leg was thinner than my right.

>

>To date none of my children are showing any sign of having CMT. Hopefully

>they won't.

>

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

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[Guest guest]

Hi , welcome to our club. My name is Joi, I'm 40 and have one daughter.

Just curious, what state do you live in? I live in California. Looking for

other women in my state with CMT.

[Guest guest]

In a message dated 10/2/2000 10:39:31 AM Pacific Daylight Time,

ohpechez@... writes:

<< Hi , welcome to our club. My name is Joi, I'm 40 and have one

daughter.

Just curious, what state do you live in? I live in California. Looking for

other women in my state with CMT.

>>

what part of CA?

jenny

[Guest guest]

Hi. This is Doreen. I'm new to this discussion group too. I'm 53, single,

and live in Southern California in the San Bernardino mountains (Big Bear

area). I would also like to get together with others if possible. I visit my

daughter in Tacoma, Washington, a couple times a year. I also have a son

that just moved to Las Vegas which is a drivable.

I was diagnosed with CMT2 about 10 years ago when my toes started going numb,

plus sensation of pins and needles. I've always had high arches and a

lifetime of sprained ankles and no energy. Was also diagnosed with mild

scoliosis as a child. I've struggled with chronic fatigue for many years.

First I was diagnosed with EBV, then Fibromyalgia. Also have bilateral

carpel tunnel syndrome. My neurologist says all are likely CMT.

I've been under extreme stress on my job for the past year and my symptoms

and CMT progression have gotten much work during the same period. I posted a

question asking about stress' impact on CMT. It seems to be a common

experience among CMTrs, yet there's not much said about it by the medical

profession. I just went out on medical leave and have filed a Worker's

Compensation claim. Has anyone had any luck going down this path?

I am scheduled for surgery on my left foot on 10/17 at USC Medical Center.

From what I'm reading in this discussion group, it sounds like it'll be 6-8

weeks before I'm in a walking cast. Does the surgery sometimes not work, or

make things worse? Are subsequent surgeries needed over time? Having second

thoughts, especially since I live alone and my family doesn't live nearby.

Really glad to have found this group. I don't feel so alone.

Doreen

California

[Guest guest]

Joi/, I live in Southern California in the San Bernardino mountains

(Big Bear area). I rent a room during the week in San Dimas and work in

Pasadena. Currently on medical leave. Are there other CMTrs in Los Angeles,

Orange, San Bernardino, or Riverside counties?

Doreen

[Guest guest]

In a message dated 10/2/2000 11:19:47 AM Pacific Daylight Time,

sugrbearft@... writes:

<< Hi. This is Doreen. I'm new to this discussion group too. I'm 53,

single,

and live in Southern California in the San Bernardino mountains (Big Bear

area). I would also like to get together with others if possible. I visit

my

daughter in Tacoma, Washington, a couple times a year. I also have a son

that just moved to Las Vegas which is a drivable.

>>

HI Doreen , I have been to Big Bear many times as a child. Once as an adult.

To bad Santas Village closed. I live in Lancaster.

How do you do in the cold weather?

jenny

[Guest guest]

In a message dated 10/2/2000 11:19:47 AM Pacific Daylight Time,

sugrbearft@... writes:

<< 've been under extreme stress on my job for the past year and my symptoms

and CMT progression have gotten much work during the same period. I posted

a

question asking about stress' impact on CMT. It seems to be a common

experience among CMTrs, >>

I react awful to stress. My CMT goes crazy.

jenny