Re: What to Do???

[Guest guest]

Hello, and welcome to the group.

My daughter Willow measured at 1.2cm when we started tx. I was told

she was in the moderate category. To me 1cm is alot, but those are

all just numbers. Ask yourself if you are happy with your child's

headshape. Will you be ok with it if it doesn't get any better? You

will not be able to go back and change your mind. My daughter Willow

still does not look perfect, but someone else would never know that

anything was wrong with her. She has a folder in before and after

local bands. (Willow's Cranio).

Please feel free to ask any ? you have. Can you add the location of

the STARband ortho you would go to IF you chose to band? Maybe we

have members that can help more.

The decision is the worst. You will find tons of support on this

board, no matter what you decide.

Sandy Willow's Mom

>

> Hello -

>

> I am torn on the issue of using the Starband treament or not. My

> daughter just turned nine months. Her dr sent us to a specialist

> who suggested we use the Starband. We had all of the catscan and

> xrays done and all is well. I was told by the Orthotists that she

> has a mild case with the measurments being 1cm in difference. The

> reason I hesitate is another dr in our group said he would not

> recommend us doing this. Should I get another opinion from a

second

> neurosur?

[Guest guest]

Thanks for the welcome!

The Ortho we are using is in Tampa, Florida. We actually had her

fitting for the starband today but I was told to wait to start her

in it until tomorrow as she has has an ear infection and is still

running a bit of a fever. has a ton of hair so it is not

noticable unless her hair is wet. Her face is still very

symetrical. What worries me is I thought this would have corrected

itself by now. My son had tortocolis (sp?) and thru positioning and

therapy we corrected it on our own. Do you know what can happen if

it is not corrected?

Thanks - 's Mom

> >

> > Hello -

> >

> > I am torn on the issue of using the Starband treament or not.

My

> > daughter just turned nine months. Her dr sent us to a

specialist

> > who suggested we use the Starband. We had all of the catscan

and

> > xrays done and all is well. I was told by the Orthotists that

she

> > has a mild case with the measurments being 1cm in difference.

The

> > reason I hesitate is another dr in our group said he would not

> > recommend us doing this. Should I get another opinion from a

> second

> > neurosur?

[Guest guest]

From what I understand, 1 cm is not mild, it is moderate. My son had

moderate plagio with 10mm asymmetry and by 17 months it looked so bad

the poor kid was starting to look like a developmentally delayed boy--

that smashed look some delayed kids have. Any baby will still look

basically round and wonderful at 9 mos. It's what they look like at 5

or 15 that you have to worry about. As facial features develop any

asymmetry becomes more noticeable and medical problems can crop up or

worsen (such as cross bite, astigmatism, etc).

I sound like such an alarmist, don't I? I really don't mean to scare

or upset you. I let my son's docs blow off his plagio until 17 mos.

I am still angry and upset that I didn't get him treatment sooner. It

sounds like the specialist is behind banding and you will get support

for insurance. If it were me I would listen to the specialist and

think about the band. How much experience does the ortho have? I am

pleased to hear they aren't pushing you into anything. However,

again, 10mm of asymmetry is not usually considered mild. A normal

adult should have under 3 mm of asymmetry.

I'm too tired to be tactful. I hope I didn't upset you.

, 22 mos, DOC Grad 9/7

>

> Hello -

>

> I am torn on the issue of using the Starband treament or not. My

> daughter just turned nine months. Her dr sent us to a specialist

> who suggested we use the Starband. We had all of the catscan and

> xrays done and all is well. I was told by the Orthotists that she

> has a mild case with the measurments being 1cm in difference. The

> reason I hesitate is another dr in our group said he would not

> recommend us doing this. Should I get another opinion from a

second

> neurosur?

[Guest guest]

Hi,

It can be so difficult deciding on treatment, when there are such

varying opinions from the medical community on when to band, and

when not to band!

Currently, there is no industry standard within the orthotics

industry on what is considered mild, moderate, or severe, although I

hear there is work happening against establishing some standards.

Until then, many times the decision is left up to the parents

whether or not to pursure. My own opinion is that 1 cm, or 10mm is

in the moderate range, not mild.

Of the different doctors you might see to evaluate plagio, peds and

neuros rate the same cases mild that craniofacial and plastic

surgeons might rate moderate or worse according to recent research.

Although the AAP released Plagiocephaly treatment guidelines in July

2003, they offered up no guideance to medical professionals as to

evaluating severity or when to recommend banding.

Because you'll run into all these different opinions, it's best to

go with your own gut and make a decision based on your own comfort

level. If your daughter's head were not to naturally correct at all

from its current shape, would you be totally happy? It may also

help to know that you can always quit the band once you start it if

you change your mind. However, if you forgo the band now, and start

to have nagging doubts later, it may be too late to get good results

from a band.

I wish I could be more helpful; would you keep us posted on how your

decision process goes?

Take care,

Christie (Mom to Repo'd Remy)

>

> Hello -

>

> I am torn on the issue of using the Starband treament or not. My

> daughter just turned nine months. Her dr sent us to a specialist

> who suggested we use the Starband. We had all of the catscan and

> xrays done and all is well. I was told by the Orthotists that she

> has a mild case with the measurments being 1cm in difference. The

> reason I hesitate is another dr in our group said he would not

> recommend us doing this. Should I get another opinion from a

second

> neurosur?

[Guest guest]

Thank you so much for all of the input. I did not sleep well last

night as all I could think about was what is the right thing to do.

My husband and I did decide to go with the treatment. I was so

nervous to put the Starband on this morning and to much

surprise she doesn't mind it at all.

I do have another question: Should the band fit tight at the base

that comes down in front of her ear? She is on the one hour on and

on hour off for today but noticed after the first hour an indention

in the shape of the section that comes in front of her ears right

along the cheekbone.

Again, thank you all for your opinions.

's Mom

-- In Plagiocephaly , " redlocks2003 " <redlocks@i...>

wrote:

>

> Hi,

>

> It can be so difficult deciding on treatment, when there are such

> varying opinions from the medical community on when to band, and

> when not to band!

>

> Currently, there is no industry standard within the orthotics

> industry on what is considered mild, moderate, or severe, although

I

> hear there is work happening against establishing some standards.

> Until then, many times the decision is left up to the parents

> whether or not to pursure. My own opinion is that 1 cm, or 10mm

is

> in the moderate range, not mild.

>

> Of the different doctors you might see to evaluate plagio, peds

and

> neuros rate the same cases mild that craniofacial and plastic

> surgeons might rate moderate or worse according to recent

research.

> Although the AAP released Plagiocephaly treatment guidelines in

July

> 2003, they offered up no guideance to medical professionals as to

> evaluating severity or when to recommend banding.

>

> Because you'll run into all these different opinions, it's best to

> go with your own gut and make a decision based on your own comfort

> level. If your daughter's head were not to naturally correct at

all

> from its current shape, would you be totally happy? It may also

> help to know that you can always quit the band once you start it

if

> you change your mind. However, if you forgo the band now, and

start

> to have nagging doubts later, it may be too late to get good

results

> from a band.

>

> I wish I could be more helpful; would you keep us posted on how

your

> decision process goes?

>

> Take care,

>

> Christie (Mom to Repo'd Remy)

>

>

>

> >

> > Hello -

> >

> > I am torn on the issue of using the Starband treament or not.

My

> > daughter just turned nine months. Her dr sent us to a

specialist

> > who suggested we use the Starband. We had all of the catscan

and

> > xrays done and all is well. I was told by the Orthotists that

she

> > has a mild case with the measurments being 1cm in difference.

The

> > reason I hesitate is another dr in our group said he would not

> > recommend us doing this. Should I get another opinion from a

> second

> > neurosur?

[Guest guest]

I am so sorry you are going through this.

I can not advise on meds but know my prayers are with you.

Raniolo

From: judyamcgee <judyamcgee@...>

Subject: [ ] What to do???

Date: Tuesday, November 18, 2008, 9:19 AM

I am a 58 year old RA patient who has has had success with the combo of

Prednisone, MTX, & Enbrel for about 3 years. I've just had the very

unpleasant experience of a pretty serious infection & spent 5 days in

the hospital,in isolation.

I posted a couple of weeks ago about having shingles. It quickly got

out of control because of my compromised immunity. I am now home under

Home Health care, having 3 IV treatments a day for 2 weeks. (Had to go

to surgery & get a central line put in for that because of lousy veins!)

I am off the MTX & Enbrel till I'm done with the IV therapy. I had 3

different Dr.s in the hospital. One of them with no tact told me that

this happened to me because of the Enbrel. My rheumey says we will

discuss either changing meds or dosing.

I know that I will have to do something if I want to walk. Just not

sure....Should I try another biologic? Try a lower dosage of Enbrel?

At this point, I'm just trying to get well. I'm just kinda scared

about future RA treatment. I know some of you can talk me through this.

Thanks,

Judy

[Guest guest]

Judy,

I am so sorry that you are going through all of this.

My suggestion is concentrate on getting well first, when you are

ready, then look at your options.

Yes, we know the risk of taking biologics and getting sick. We also

know the damage RA will do without meds. Some doctors just don't get

it and never will acknowledge what is not in their field. Just once

I would love to tell one to stick to their field and let the

rheumatologist handle their's.

I hope you are feeling better soon.

Shirley

>

>

>

> From: judyamcgee <judyamcgee@...>

> Subject: [ ] What to do???

>

> Date: Tuesday, November 18, 2008, 9:19 AM

>

>

>

>

>

>

> I am a 58 year old RA patient who has has had success with the

combo of

> Prednisone, MTX, & Enbrel for about 3 years. I've just had the

very

> unpleasant experience of a pretty serious infection & spent 5 days

in

> the hospital,in isolation.

>

> I posted a couple of weeks ago about having shingles. It quickly

got

> out of control because of my compromised immunity. I am now home

under

> Home Health care, having 3 IV treatments a day for 2 weeks. (Had

to go

> to surgery & get a central line put in for that because of lousy

veins!)

>

> I am off the MTX & Enbrel till I'm done with the IV therapy. I had

3

> different Dr.s in the hospital. One of them with no tact told me

that

> this happened to me because of the Enbrel. My rheumey says we will

> discuss either changing meds or dosing.

>

> I know that I will have to do something if I want to walk. Just

not

> sure....Should I try another biologic? Try a lower dosage of

Enbrel?

> At this point, I'm just trying to get well. I'm just kinda scared

> about future RA treatment. I know some of you can talk me through

this.

> Thanks,

> Judy

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Judy, I got shingles shortly after my RA symptoms started, before I was

on any medication for RA. I assume that my immune system was busy

attacking my joints and was too busy to fight off anything else. So

just having RA can make you get more infections.

I have been on Enbrel for over six years, and I've been lucky enough

not to get very many infections. I do take a multivitamin, plus extra

B, C, D, calcium, etc., and I think that those help. I'm retired, so I

can get plenty of sleep.

When you get well, see what your doctor advises. We are always told to

stop the biologics when we get an infection.

I hope you get well soon and don't have any lasting effect from the

shingles.

Sue

On Tuesday, November 18, 2008, at 09:19 AM, judyamcgee wrote:

> I am a 58 year old RA patient who has has had success with the combo of

> Prednisone, MTX, & Enbrel for about 3 years. I've just had the very

> unpleasant experience of a pretty serious infection & spent 5 days in

> the hospital,in isolation.

>

> I posted a couple of weeks ago about having shingles. It quickly got

> out of control because of my compromised immunity. I am now home under

> Home Health care, having 3 IV treatments a day for 2 weeks. (Had to go

> to surgery & get a central line put in for that because of lousy

> veins!)

>

> I am off the MTX & Enbrel till I'm done with the IV therapy. I had 3

> different Dr.s in the hospital. One of them with no tact told me that

> this happened to me because of the Enbrel. My rheumey says we will

> discuss either changing meds or dosing.

>

> I know that I will have to do something if I want to walk. Just not

> sure....Should I try another biologic? Try a lower dosage of Enbrel?

> At this point, I'm just trying to get well. I'm just kinda scared

> about future RA treatment. I know some of you can talk me through

> this.

> Thanks,

> Judy

>

>

>

>

> ------------------------------------

>

>