Advice

January 21, 2003

I agree with you . There are times when a person can be too overwhelmed

with all given advice and then you start thinking you have this or that and what

if's. All of a sudden you convince yourself you should take a million

supplements and only minocin. I have somewhat done this to myself. I think we

should express suggestions but don't tell a person what he/she should take or do

or don't. With all of the resources we have now in the U.S. to getting meds in

another country I would hate to see someone diagnose themselves and get internet

drugs and complicate their lives.

DM

February 4, 2004

is there anyone else in a reasonable driving distance? i know some have driving long hours for treatment which really isnt something that anyuone wants to do just didnt know if there was someone with in an hour drive?

Hillymom to 6ages 12,7,5,4,2,8moshttp://64.216.130.105/hilly

advice

Thank you to everyone for all the good advice. Glad to know that I am not being unreasonable for being angry. There is no one else in my area that does these helmets except this guy. Supposedly he has done hundreds of them in Texas before coming to Gainesville, FL. He teaches in another state or something but he led me to believe he is here one week and in the other state the next week but our appt. was yesterday and when I called his cell phone today he said he wouldn't be back till our next appt. I plan on calling him again tomorrow and letting him know that this is not okay.Thanks again, you all have been a BIG helpTrisFor more plagio info

February 5, 2004

Dear Tris,

The guy who fitted your helmet should come back to adjust it, it is not at

all acceptable that he is not interested, two weeks is no good.

We have a similar distance problem as our Doctor lives in Germany and we

are in England, but if we have a problem, we sort it out by email.

I am sorry if I upset one or two people by mentioning that you could alter

the inside of the helmet very slightly, but I was only trying to help, so

that you would not have your helmet sat in a cupboard for two weeks, instead

of it rounding your childs head.

In England, we only have the option of seeing two people to fit helmets,

fortunately they are both excellent and very caring.

It seems in the USA its a bit like a minefield, as regards to finding

someone good, who cares in some of your states.

We went in blind, but were very lucky.

Ian.

advice

> Thank you to everyone for all the good advice. Glad to know that I am

> not being unreasonable for being angry. There is no one else in my

> area that does these helmets except this guy. Supposedly he has done

> hundreds of them in Texas before coming to Gainesville, FL.

>

> He teaches in another state or something but he led me to believe he

> is here one week and in the other state the next week but our appt.

> was yesterday and when I called his cell phone today he said he

> wouldn't be back till our next appt. I plan on calling him again

> tomorrow and letting him know that this is not okay.

>

> Thanks again, you all have been a BIG help

>

> Tris

>

> For more plagio info

February 5, 2004

Ian, is that what Dr. Blecher has told you to do for red spots in

between visits? Sand out some of the foam yourself?

Dustie

--- In Plagiocephaly , " Ian REDMAN " <IanAdele@r...>

wrote:

> Dear Tris,

>

> The guy who fitted your helmet should come back to adjust it, it

is not at

> all acceptable that he is not interested, two weeks is no good.

>

> We have a similar distance problem as our Doctor lives in Germany

and we

> are in England, but if we have a problem, we sort it out by email.

>

> I am sorry if I upset one or two people by mentioning that you

could alter

> the inside of the helmet very slightly, but I was only trying to

help, so

> that you would not have your helmet sat in a cupboard for two

weeks, instead

> of it rounding your childs head.

>

> In England, we only have the option of seeing two people to fit

helmets,

> fortunately they are both excellent and very caring.

>

> It seems in the USA its a bit like a minefield, as regards to

finding

> someone good, who cares in some of your states.

>

> We went in blind, but were very lucky.

>

> Ian.

>

> advice

>

> > Thank you to everyone for all the good advice. Glad to know that

I am

> > not being unreasonable for being angry. There is no one else in

my

> > area that does these helmets except this guy. Supposedly he has

done

> > hundreds of them in Texas before coming to Gainesville, FL.

> >

> > He teaches in another state or something but he led me to

believe he

> > is here one week and in the other state the next week but our

appt.

> > was yesterday and when I called his cell phone today he said he

> > wouldn't be back till our next appt. I plan on calling him again

> > tomorrow and letting him know that this is not okay.

> >

> > Thanks again, you all have been a BIG help

> >

> > Tris

> >

> > For more plagio info

February 5, 2004

Hi Dustie,

When we went for the original fitting, he should me what to do to the

helmet, as I was interested, as I am a design engineer.

Ian.

advice

> >

> > > Thank you to everyone for all the good advice. Glad to know that

> I am

> > > not being unreasonable for being angry. There is no one else in

> my

> > > area that does these helmets except this guy. Supposedly he has

> done

> > > hundreds of them in Texas before coming to Gainesville, FL.

> > >

> > > He teaches in another state or something but he led me to

> believe he

> > > is here one week and in the other state the next week but our

> appt.

> > > was yesterday and when I called his cell phone today he said he

> > > wouldn't be back till our next appt. I plan on calling him again

> > > tomorrow and letting him know that this is not okay.

> > >

> > > Thanks again, you all have been a BIG help

> > >

> > > Tris

> > >

> > > For more plagio info

February 6, 2004

Good for you! Good luck in getting some results!

and trijess3 <trijess3@...> wrote:

Thank you to everyone for all the good advice. Glad to know that I am not being unreasonable for being angry. There is no one else in my area that does these helmets except this guy. Supposedly he has done hundreds of them in Texas before coming to Gainesville, FL. He teaches in another state or something but he led me to believe he is here one week and in the other state the next week but our appt. was yesterday and when I called his cell phone today he said he wouldn't be back till our next appt. I plan on calling him again tomorrow and letting him know that this is not okay.Thanks again, you all have been a BIG helpTrisFor more plagio info

April 18, 2004

,

I am answering as a parent who has 2 children, one with pdd- autism

and one with apraxia. They are very different diagnosis -different therapies.

My boys story http://www.eparent.com/welcome/momsnight.htm

Get your child diagnosed by a dev ped, or a ped

neurologist. There is a series of questions the neuroMD will ask you, and an

exam/testing

which will help to know where a child would fall into if they had

any symptoms of autism or apraxia etc.

Did you read The Late Talker?

Jeanne

> Hi all,

>

> I have posted a couple of times regarding my son, Ethan. Ethan is

2.3

> years old and is saying about six words. He is enrolled in early

> intervention and is seeing a sped teacher for social

skills/behavioral

> stuff, which is going very well. He displays imaginative play and

> interacts well with her. She is not concerned about his social

> development. EI does not have a speech therapist available, which

I

> posted about recently. The only behaviors, other than the speech

> delay, I am concerned about are that Ethan can carry items around,

> lately it has been stickers - one in each hand, for hours and

sometimes

> holds his hand out the the right or left and watches it out of the

> corner of his eye as he moves the item(s) behind his back. He has

also

> started having temper tantrums on occasion - appropriate to

frustration

> or tiredness - where he hits himself in the head or bangs his head

on

> the floor - never to the point of hurting himself seriously.

>

> My question is this. I feel very discombobulated regarding Ethan's

> treatment and mostly because I don't have a sense as to what is

going

> on. I have him in private speech therapy, but I have never had an

> evaluation to determine exactly what the problem is, only that

there is

> a delay. Where do I start in evaluating what is going on - with a

> developmental pediatrician, a psychologist, a pediatric

neurologist?

> What kind of testing seems indicated? I am concerned about autism

and

> would like to rule this out if possible. Is there someone that can

> test for autism as well as test for issues related to possible

apraxia?

>

> Thank you so much in advance for any help you can provide,

>

> Best wishes,

June 6, 2004

Hi there. Helmets are fun! Go to "parker" in the "Our plagio kids" and check out the fun you can have decorating them. Plus, you can save your baby a lifetime of problems from plagiocephaly. Really, ask anyone, the babies rarely mind the helmet. It's the parents who worry about what people will think when they see the little helmet-wearing baby. Put that out of your mind and go with your gut feeling on whether you (and your child) can live with a misshapen head. If not, go for the Band. Good luck!

, 18 mos, tort, plagio, DOC Band 5/7

On Mon, 07 Jun 2004 00:16:00 -0000 "leejennamia" <leejennamia@...> writes:

Hi,We live in the UK and have a 6 month old daughter. She has been diagnosed with plagiocephaly but are in too minds about these helmet bands? Can anyone let me know their views or opinions?Thank youLeeFor more plagio info

June 7, 2004

Hi Lee,

I just wanted to welcome you to the group and second what Debbie has

already told you. Our babies have excellent results from being

banded! Be sure to check out our before and after photo section.

, mom to Hannah, DOCband #3 3/30

Cape Cod, Ma

> Hi,

>

> We live in the UK and have a 6 month old daughter. She has been

> diagnosed with plagiocephaly but are in too minds about these

helmet

> bands? Can anyone let me know their views or opinions?

>

> Thank you

>

> Lee

January 21, 2005

Hi na,

Welcome to the group. If Cranial Tech is an option for you, I think

you should go to them. They are the best in the business. Scheck and

Siress don't use the DOCband. The only company that uses the DOCband

is Cranial Tech. They do have DOCband licensed centers, but Scheck

and Siress isn't one of them.

Do you know how much experience the STARband ortho has? Experience is

a MUST when it comes to bands. These bands in the hands of an

inexperienced orthotist can (and do) cause more harm than good.

Please let us know what you decide.

--- In Plagiocephaly , " smg4566 " <susannagraham@j...>

wrote:

>

> Hi everyone. I have been lurking on this board for the past month,

> gathering information. Thank you so much for the wealth of

knowledge

> that you all provide. I need some advice and am hoping you all can

> help. My son on is 5 months old and was diagnosed with plagio

> and torticollis at his 4 month check up. We are in the western

> suburbs of Chicago and have consulted with Cranial Tech. and Hanger,

> in Aurora. I am also waiting to hear back from Scheck and Siress in

> Naperville - they use either the DOC Band or Star Band. It seems

from

> all that I have learned that we can't really go wrong by getting the

> DOC Band through CT. However, they are out of network on our

> insurance (We are in the appeal process, but it should be a pretty

> straight forward appeal as all I need is to provide them with is the

> letter of medical necessity and the diagnosis of tort.), Hanger and

> Scheck and Siress are in network. However they don't seem to have

near

> the experience level of CT. Hanger sees about 30 cases a year. (

Our

> insurance is Great-West, by the way.) My question is, has anyone had

> any experience with these locations? And, is 30 cases a year enough

> experience?

>

> Thanks so much for your help.

>

> na

> mom to on (Plagio and Tort)

January 21, 2005

Hi na, welcome to the grp. I hope you get the answers you need

and I really hope you can get approval for CT so that it wouldn't be

too much of a financial burden. It's such a shame that ins. co.'s

have to cause more stress in this already somewhat stressful

treatment. We were faced w/having to pay $2800 for a STARband (which

we would've done) but ins. finally came thru w/50%. Even if I had to

pay full price, I would choose the very best place you could

reasonably travel to beit the DOCband or any other band as long as

they have good experience. Just my opinion. Good luck.

Sue

Colin F. 15 mos.

STARband grad

--- In Plagiocephaly , " smg4566 " <susannagraham@j...>

wrote:

>

> Hi everyone. I have been lurking on this board for the past month,

> gathering information. Thank you so much for the wealth of

knowledge

> that you all provide. I need some advice and am hoping you all can

> help. My son on is 5 months old and was diagnosed with plagio

> and torticollis at his 4 month check up. We are in the western

> suburbs of Chicago and have consulted with Cranial Tech. and Hanger,

> in Aurora. I am also waiting to hear back from Scheck and Siress in

> Naperville - they use either the DOC Band or Star Band. It seems

from

> all that I have learned that we can't really go wrong by getting the

> DOC Band through CT. However, they are out of network on our

> insurance (We are in the appeal process, but it should be a pretty

> straight forward appeal as all I need is to provide them with is the

> letter of medical necessity and the diagnosis of tort.), Hanger and

> Scheck and Siress are in network. However they don't seem to have

near

> the experience level of CT. Hanger sees about 30 cases a year. (

Our

> insurance is Great-West, by the way.) My question is, has anyone had

> any experience with these locations? And, is 30 cases a year enough

> experience?

>

> Thanks so much for your help.

>

> na

> mom to on (Plagio and Tort)

February 21, 2005

Thanks Joanne. My appointment isn't until next Thursday but I am hoping he

will listen to me. I keep being told that it will get better etc but a year

later still in pain! I was doing research and it seems many doctors are

saying there is a 1 % chance of a disc herination in the thoracic spine and

that

many do not order MRI's of this region because of that. I hope since it is

almost a year he will decide with me that something is wrong.

Hugs, joy

February 21, 2005

Hi Joy: Great to hear from you again. Forget what the chiropractor says. Call

the doctors now and try to make an appointment as soon as possible. Tell them

what you are saying here and demand a MRI on your back and neck again. When I

was in pain, the Xrays showed nothing wrong and they thought I was crazy. Then

they finally got smart (lol), and took an MRI of my lumbar spine and there it

was (severe lumbar spinal canal stenosis). In my case, the Xrays were not

showing what the real issue was and the MRI did. I am just giving you an example

of what happened to me. The Xrays showed that I had very cartliage in my

shoulders so my movement is very limited in my hands and range of motion for my

shoulders. I wish you the best Joy (you know that) and Hugs too....Joanne from

California

donjoy3@... wrote:

Hi,

I haven't written in a while but I am still here and still suffering with

my back. Recap I have two herniated discs in my neck at C4.-, C5.. I was

set up for the fusion back in Sept but canceled it out of fears. So I went to

an acupuncturist for help, which helped some. They claimed my back pain is

from the neck but mind you and X-ray was never done of my back nor and MRI.

The neck was there answer to everything. Since DEC I have been losing

sensation in my upper back, I was told that is was just the disc pressing on the

nerve and not to worry for acupuncture will help and adjustments by chiropractor

will too. Today, I have the burning in the spot, pain which I can't

understand why I have to feel and some numbness in that I can't feel the tens

unit

there or the needles for acupuncture. It will feel very faint shall I say.

So any advice? Do you think the doctors are right in that it is all my neck

or should they do an MRI. I made an appointment to go back to my Orthopedic

next Thursday to ask him why can't they do an MRI of the back. I was in an

auto accident March 4th last year and I am still suffering. Some areas are

worse today than then. My chiropractor keeps saying I am improving. What a

joke! I want to not sit here and be in pain so much anymore. I have to work

and that makes it all the worst. So help me to know what to do.

Joy

February 21, 2005

Joy,

Insist on the MRI and let us know of the results. Many feel chiropractors

have there place but in my case, one would not touch my back with a 10 foot

pole nor would I let them. I have several thoracic disc protrusions/extrusion

compressing my spine to varying degrees, the worst being a ~6 mm depression.

Fortunately, I am not experiencing any of the serious symptoms of a spinal

cord injury, just all the pain. I have spent the last 2 months in the 6-8

range on the pain scale even while taking 3-4 oxycodones/per day for

breakthrough

pain, a 100 ugram/hour Duragesic patch, 1500 mg/day Neurontin,

zannaflex/skelaxin, and Cymbalta.

Best of luck and keep everyone posted and let us know how you are doing.

February 21, 2005

my pain levels have been in that range too. Sometimes I feel like the

chiropractor thinks it is just me. On one re examine I broke down crying

because

it caused so much pain. All I hear from him is how my range of motion has

improved. At one visit I told him I have had to learn how to deal with. My

appointment is not until next Thursday, wish it was this one.

Joy

February 22, 2005

Joy,

Your situation seems very similar to the one that I experienced about a year

ago. I was doing a little wrestling with my then fiancee, nothing WWF or

anything, just some fun rolling around, and at one point he zigged and I zagged,

and we both heard a pop and immediately following, extreme pain in my neck and

mid-back. Needless to say we went to the ER, where they only did the mri of my

neck and found a herniated disc at C5-6, with degeneration at the discs above

and below it, and at that site. They sent me back to my pain doc where I told

him that I was also having mid-back pain, he proceeded to tell me that this pain

was " referred pain " from my neck and not to worry about it, because with the

resolution of the neck pain, this was resolve too. The treatment for the C5-6

went on for about 6 months after which my neurosurgeon decided that a C5-6

fusion was in order. He also was saying that the mid-back pain was from the

neck. After the neurosurgeon changed his mind about the two more times(long

story) I insisted with my pain doc that they do at least an x-ray of the

mid-back. 3 days later I was getting a plain film done. One week later I got

a call from the pain doc telling me to go get an mri and then come into the

office. When I got to my appt. the doctor proceeded to tell me that I had a

compression fracture at the T6 disc, with severe degeneration at the T5 through

T7 discs.

So,I would say that if you are concerned about this, I would press your doctor

to at least do a CT scan. We know our bodies better than they do, and if you

have a sense that something else is going on, then it might be. If this doctor

that you are seeing won't do it, then I would request to see another doctor, or

go see your primary doctor. I love my primary doc to death, he is a D.O. and I

really like the way he practices medicine, he takes the whole person into effect

and is amenable to being convinced of what I think is going on. A big portion of

the time I correct though, and he sees that too.

Let us know what you decide to do. I will keep you in my prayers Joy, for

strength and comfort to endure and peace to thrive.

Blessings,

Lise

" Be who you are and say what you feel, because people who mind don't

matter and people who matter don't mind. " Theodor Seuss Geisel

-------------- Original message --------------

Hi,

I haven't written in a while but I am still here and still suffering with

my back. Recap I have two herniated discs in my neck at C4.-, C5.. I was

set up for the fusion back in Sept but canceled it out of fears. So I went to

an acupuncturist for help, which helped some. They claimed my back pain is

from the neck but mind you and X-ray was never done of my back nor and MRI.

The neck was there answer to everything. Since DEC I have been losing

sensation in my upper back, I was told that is was just the disc pressing on

the

nerve and not to worry for acupuncture will help and adjustments by

chiropractor