Need help!

[Guest guest]

It sounds like it may be yeast die off.

pATTI

- In @y..., " shygirl75158 " <horses@n...> wrote:

> Our son, Ethan is almost three. He weighs 32 pounds and has weighed

> the same for a year now. He is tall for his age (3'4 " ). He is

> skinny to me. He is on gf/cf. He gets a multi vitamin/mineral from

> the gf pantry because after trial and error, that is the one we could

> get him to take. He also gets a teaspoon of DMG in the mornings, pro

> bio gold twice a day and Culturelle once a day. He also gets an

> extra 1/2 teaspoon of Kirman's liquid zinc in the evenings. Since

> starting these interventions, I have noticed many improvements, but

> his sensitivity to light and sound have increased. The MAJOR problem

> seems to be digestive. First he went from being constipated all the

> time to having diarrhea or mush all the time. Now he is having a

> serious problem with constipation. It seems to be stuck, and he

> can't get it out. He must be having stomach pain because he

> disappears into his room and I find him hiding in the corner or under

> pillows and I can tell he does not feel good at all. We stand him up

> and help him do knee bends and then his little legs tremble and he

> manages, and his movement is hard followed by mush. I hope this

> isn't too graphic for anyone, but we are so worried. Do I take him

> back to his regular doctor or try to find a pediatric

> gastoenterologist? I think this is affecting his ability to gain

> weight. I tried to add in Co Q 10 enzyme about a week ago, but when

> I did, the first day he threw up twice and I didn't give him any more

> of it, and the next day he was throwing up again. Any ideas you have

> on what may be going on here and what we should do would be

> appreciated.

>

> Thanks,

>

> Haven

[Guest guest]

My son is almost three, weighs 33 pounds and is 35 inches. He also

gets very constipated, rolls around and hikes his legs in pain.

First, increased sound and light sensitivity is something that

happened to our child during chelation. Your child is not chelating,

but he could be absorbing more minerals. Each cell has a little pump

that supposed to pump out bad metals and pump in good (like

magnesium) but if your child is deficient, the bad won't come out.

Perhaps he is absorbing some of this stuff and it's doing its job by

stirring things up.

As for the constipation, we had this about a month back. Didn't have

a BM in like eight days. We started using alow-vera juice and it

helped.

His body is going to go through changes while adjusting to the diet

and supplements. It's best to start slow and do one at a time so you

know which one's he's reacting to (positive or negative).

One option is to remove one supplemnt at a time to see if things get

better.

Hang in there!

> Our son, Ethan is almost three. He weighs 32 pounds and has

weighed

> the same for a year now. He is tall for his age (3'4 " ). He is

> skinny to me. He is on gf/cf. He gets a multi vitamin/mineral

from

> the gf pantry because after trial and error, that is the one we

could

> get him to take. He also gets a teaspoon of DMG in the mornings,

pro

> bio gold twice a day and Culturelle once a day. He also gets an

> extra 1/2 teaspoon of Kirman's liquid zinc in the evenings. Since

> starting these interventions, I have noticed many improvements, but

> his sensitivity to light and sound have increased. The MAJOR

problem

> seems to be digestive. First he went from being constipated all

the

> time to having diarrhea or mush all the time. Now he is having a

> serious problem with constipation. It seems to be stuck, and he

> can't get it out. He must be having stomach pain because he

> disappears into his room and I find him hiding in the corner or

under

> pillows and I can tell he does not feel good at all. We stand him

up

> and help him do knee bends and then his little legs tremble and he

> manages, and his movement is hard followed by mush. I hope this

> isn't too graphic for anyone, but we are so worried. Do I take him

> back to his regular doctor or try to find a pediatric

> gastoenterologist? I think this is affecting his ability to gain

> weight. I tried to add in Co Q 10 enzyme about a week ago, but

when

> I did, the first day he threw up twice and I didn't give him any

more

> of it, and the next day he was throwing up again. Any ideas you

have

> on what may be going on here and what we should do would be

> appreciated.

>

> Thanks,

>

> Haven

[Guest guest]

Hi Haven,

When we just started the supplements (zinc+B6+vitaminC+dmg), my son

got terrible diarrhea with mucous and blood. We even had to take him

to the emergency room. Neither his pediatrician nor

gastroenterologist were able to help with anything. Before that he

had good stools. After adding Houston enzymes and taurine, this was

fixed. I would advice to stop all the supplements except culturelle,

after that see what happens and may be slowly introduce enzymes,

after that reintroduce supplements he is currently taking.

Margaret

> Our son, Ethan is almost three. He weighs 32 pounds and has

weighed

> the same for a year now. He is tall for his age (3'4 " ). He is

> skinny to me. He is on gf/cf. He gets a multi vitamin/mineral

from

> the gf pantry because after trial and error, that is the one we

could

> get him to take. He also gets a teaspoon of DMG in the mornings,

pro

> bio gold twice a day and Culturelle once a day. He also gets an

> extra 1/2 teaspoon of Kirman's liquid zinc in the evenings. Since

> starting these interventions, I have noticed many improvements, but

> his sensitivity to light and sound have increased. The MAJOR

problem

> seems to be digestive. First he went from being constipated all

the

> time to having diarrhea or mush all the time. Now he is having a

> serious problem with constipation. It seems to be stuck, and he

> can't get it out. He must be having stomach pain because he

> disappears into his room and I find him hiding in the corner or

under

> pillows and I can tell he does not feel good at all. We stand him

up

> and help him do knee bends and then his little legs tremble and he

> manages, and his movement is hard followed by mush. I hope this

> isn't too graphic for anyone, but we are so worried. Do I take him

> back to his regular doctor or try to find a pediatric

> gastoenterologist? I think this is affecting his ability to gain

> weight. I tried to add in Co Q 10 enzyme about a week ago, but

when

> I did, the first day he threw up twice and I didn't give him any

more

> of it, and the next day he was throwing up again. Any ideas you

have

> on what may be going on here and what we should do would be

> appreciated.

>

> Thanks,

>

> Haven

[Guest guest]

Dr. Krigsman, pediatric gastroenterologyst in Long Island, NY

can take care of this guy for you. Let me know if you desire

more detail.

G

From: " shygirl75158 " <horses@...>

Date sent: Tue, 26 Nov 2002 17:09:24 -0000

Subject: [ ] need help!

Send reply to:

[ Double-click this line for list subscription options ]

Our son, Ethan is almost three. He weighs 32 pounds

and has weighed

the same for a year now. He is tall for his age

(3'4 " ). He is

skinny to me. He is on gf/cf. He gets a multi

vitamin/mineral from

the gf pantry because after trial and error, that is

the one we could

get him to take. He also gets a teaspoon of DMG in the

mornings, pro

bio gold twice a day and Culturelle once a day. He

also gets an

extra 1/2 teaspoon of Kirman's liquid zinc in the

evenings. Since

starting these interventions, I have noticed many

improvements, but

his sensitivity to light and sound have increased. The

MAJOR problem

seems to be digestive. First he went from being

constipated all the

time to having diarrhea or mush all the time. Now he

is having a

serious problem with constipation. It seems to be

stuck, and he

can't get it out. He must be having stomach pain

because he

disappears into his room and I find him hiding in the

corner or under

pillows and I can tell he does not feel good at all.

We stand him up

and help him do knee bends and then his little legs

tremble and he

manages, and his movement is hard followed by mush. I

hope this

isn't too graphic for anyone, but we are so worried.

Do I take him

back to his regular doctor or try to find a pediatric

gastoenterologist? I think this is affecting his

ability to gain

weight. I tried to add in Co Q 10 enzyme about a week

ago, but when

I did, the first day he threw up twice and I didn't

give him any more

of it, and the next day he was throwing up again. Any

ideas you have

on what may be going on here and what we should do

would be

appreciated.

Thanks,

Haven

[Guest guest]

Get the pediatric height/weight charts off the CDC site, download,

print, plot him on there (and continue to do so in the future) as an

indicator of what is happening.

> Our son, Ethan is almost three. He weighs 32 pounds and has weighed

> the same for a year now. He is tall for his age (3'4 " ). He is

> skinny to me. He is on gf/cf. He gets a multi vitamin/mineral from

> the gf pantry because after trial and error, that is the one we

could

> get him to take.

He needs to get it in however large a quantity you can get him to take

4 times a day. Multiple daily dosing is reallly very important.

> He also gets a teaspoon of DMG in the mornings, pro

> bio gold twice a day and Culturelle once a day. He also gets an

> extra 1/2 teaspoon of Kirman's liquid zinc in the evenings. Since

> starting these interventions, I have noticed many improvements, but

> his sensitivity to light and sound have increased. The MAJOR

problem

> seems to be digestive. First he went from being constipated all the

> time to having diarrhea or mush all the time. Now he is having a

> serious problem with constipation. It seems to be stuck, and he

> can't get it out. He must be having stomach pain because he

> disappears into his room and I find him hiding in the corner or

under

> pillows and I can tell he does not feel good at all. We stand him

up

> and help him do knee bends and then his little legs tremble and he

> manages, and his movement is hard followed by mush. I hope this

> isn't too graphic for anyone, but we are so worried. Do I take him

> back to his regular doctor or try to find a pediatric

> gastoenterologist?

Neither. Unless you want to torture him a lot and not help. Unless

you can find one who will do an abdominal ultrasound to check what is

going on with the bile ducts without doing lots of other unplesant

stuff or prescribing a bunch of laxatives that will make him a lot

sicker. NO ENDOSCOPY!!!!!!!!!!!!

Give him bile salts, taurine, glycine (which tastes good), milk

thistle extract, and phosphatidylcholine or lecithin several times a

day. Also give him enough magnesium in several doses per day that he

has bowel movements. If you put a bit of epsom salts (1/16 tsp or so)

in water to which you add a bit of anything tart, or mix it in a

juice, it tastes OK. The bad taste of epsom salt in water is the

alkalinity, not the epsom salt itself.

> I think this is affecting his ability to gain

> weight. I tried to add in Co Q 10 enzyme about a week ago, but when

> I did, the first day he threw up twice and I didn't give him any

more

> of it, and the next day he was throwing up again. Any ideas you

have

> on what may be going on here and what we should do would be

> appreciated.

Lack of adequate bile flow or release may be a problem. Increasing

bile flow and feeding it to him directly (ox bile is an available

supplement, it tastes HORRIBLE, so give it to him in pills, not

crushed or opened) may promote normal healthy lubricity of the stool

so that it passes easily.

>

> Thanks,

>

> Haven

Andy .

[Guest guest]

>> The MAJOR problem

> seems to be digestive. First he went from being constipated all the

> time to having diarrhea or mush all the time. Now he is having a

> serious problem with constipation. It seems to be stuck, and he

> can't get it out. He must be having stomach pain because he

> disappears into his room and I find him hiding in the corner or

under

> pillows and I can tell he does not feel good at all.

My son tolerates basically no supplements, so I would recommend you

remove all of the supplements, get his bms back to normal, then add

back one at a time with a week between, to see if any are causing

problems.

Dana

http://www.danasview.net/

[Guest guest]

Hope this helps.

All The Best,

's LDN forum and information center

http://ldn.proboards3.com/index.cgi

Crystal's Website

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More info about LDN

http://www.gazorpa.com/

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http://www.ldnresearchtrust.org/index.htm

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Remedy Find

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Skip's Pharmacy

http://www.skipspharmacy.com/

Skip's Pharmacy LDN Survey

A survey of patients who fill prescriptions at Skip's

http://www.skipspharmacy.com/ldnprez/ldn.html

The compounder Website

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Up the Creek with a Paddle

A must read!

http://www.amazon.com/gp/product/1413765998/qid=1143158879/sr=2-1/

ref=pd_bbs_b_2_1/103-2003678-6801469?s=books & v=glance & n=283155

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TheChronicIllnessCafe

On Apr 6, 2006, at 5:53 PM, wwwchrisk wrote:

> I am Presently on Novantrone INFUSIONS every three months. I have just

> heard about LDN

> and started doing research , came upon your group and joined! It

> sounds so good and I

> want to try this . I want to learn as much as I can. Where should I go

> for basic information,

> here? or to another site? THANKS in advance for any help you can give

> me.

>

>

>

>

>

>

>

[Guest guest]

>

> I am Presently on Novantrone INFUSIONS every three months. I have just heard

about LDN

> and started doing research , came upon your group and joined! It sounds so

good and I

> want to try this . I want to learn as much as I can. Where should I go for

basic information,

> here? or to another site? THANKS in advance for any help you can give me.

>

=========

Read the LDN website at http://www.ldninfo.org

LDN of course will not work as long as you are on the Novantrone, the Novantrone

will wipe out the effects of LDN. Novantrone suppresses the immune system and

LDN boosts it. If I were you I'd start taking LDN as soon as I quit taking the

Novantrone.

[Guest guest]

Hi " Chrisk " ,

I will send you a copy the " welcome e-mail " shortly.

My best

Aletha

[low dose naltrexone] Need Help!

>I am Presently on Novantrone INFUSIONS every three months. I have just

>heard about LDN

> and started doing research , came upon your group and joined! It sounds so

> good and I

> want to try this . I want to learn as much as I can. Where should I go for

> basic information,

> here? or to another site? THANKS in advance for any help you can give me.

>

>

>

>

>

>

>

[Guest guest]

>

> Hello all,

> I have taken my LDN 3 mg for 3 nights now and I felt a little jittery

> and gasy the first day, the second day I felt ok, today I feel gasy.

> Anyone experience this.

>

> Good news though, my family says I am walking better and that when I

> hold on to them, i'm not shaky. I feel more of a sensation in my feet

> on the carpet and in my shoes. It is wonderful!

>

> Treva

>

======

What filler is in your capsules? It may be your filler causing the gas.

[Guest guest]

I don't know, I didn't know there was different types. I will check

with the pharmacist.

> >

> > Hello all,

> > I have taken my LDN 3 mg for 3 nights now and I felt a little

jittery

> > and gasy the first day, the second day I felt ok, today I feel

gasy.

> > Anyone experience this.

> >

> > Good news though, my family says I am walking better and that

when I

> > hold on to them, i'm not shaky. I feel more of a sensation in

my feet

> > on the carpet and in my shoes. It is wonderful!

> >

> > Treva

> >

> ======

>

> What filler is in your capsules? It may be your filler causing

the gas.

>

>

>

[Guest guest]

http://skipspharmacy.com/movie.phpi put this up a few days ago it is the one that says dr skip discusses fillersbut also I would think that having gas is not a bad thing is mean that the muscles in your stomach are working bettercyndiOn Jul 8, 2006, at 10:18 PM, tswonderfulspirit2002 wrote:I don't know, I didn't know there was different types. I will check with the pharmacist. > >> > Hello all,> > I have taken my LDN 3 mg for 3 nights now and I felt a little jittery > > and gasy the first day, the second day I felt ok, today I feel gasy. > > Anyone experience this. > > > > Good news though, my family says I am walking better and that when I > > hold on to them, i'm not shaky. I feel more of a sensation in my feet > > on the carpet and in my shoes. It is wonderful!> > > > Treva > >> ======> > What filler is in your capsules? It may be your filler causing the gas.> > >

[Guest guest]

I felt jittery for the first few days but not gasy.

[low dose naltrexone] Re: Need Help!

I don't know, I didn't know there was different types. I will check with the pharmacist. > >> > Hello all,> > I have taken my LDN 3 mg for 3 nights now and I felt a little jittery > > and gasy the first day, the second day I felt ok, today I feel gasy. > > Anyone experience this. > > > > Good news though, my family says I am walking better and that when I > > hold on to them, i'm not shaky. I feel more of a sensation in my feet > > on the carpet and in my shoes. It is wonderful!> > > > Treva > >> ======> > What filler is in your capsules? It may be your filler causing the gas.> > >

[Guest guest]

how much did you start on gina?cyndiOn Jul 9, 2006, at 10:37 AM, Blincoe wrote:I felt jittery for the first few days but not gasy. [low dose naltrexone] Re: Need Help!I don't know, I didn't know there was different types. I will check with the pharmacist. > >> > Hello all,> > I have taken my LDN 3 mg for 3 nights now and I felt a little jittery > > and gasy the first day, the second day I felt ok, today I feel gasy. > > Anyone experience this. > > > > Good news though, my family says I am walking better and that when I > > hold on to them, i'm not shaky. I feel more of a sensation in my feet > > on the carpet and in my shoes. It is wonderful!> > > > Treva > >> ======> > What filler is in your capsules? It may be your filler causing the gas.> > >. 

[Guest guest]

>

> I am Presently on Novantrone INFUSIONS every three months. I have just heard

about LDN

> and started doing research , came upon your group and joined! It sounds so

good and I

> want to try this . I want to learn as much as I can. Where should I go for

basic information,

> here? or to another site? THANKS in advance for any help you can give me.

>

=======

You can visit the official LDN website at http://www.ldninfo.org

or visit my LDN forum and information center, ignore the google ads at the

top...I do not put those ads there.

Low Dose Naltrexone Forum - Home

http://ldn.proboards3.com/index.cgi?

[Guest guest]

3.5mg is what I started on

[low dose naltrexone] Re: Need Help!

I don't know, I didn't know there was different types. I will check with the pharmacist. > >> > Hello all,> > I have taken my LDN 3 mg for 3 nights now and I felt a little jittery > > and gasy the first day, the second day I felt ok, today I feel gasy. > > Anyone experience this. > > > > Good news though, my family says I am walking better and that when I > > hold on to them, i'm not shaky. I feel more of a sensation in my feet > > on the carpet and in my shoes. It is wonderful!> > > > Treva > >> ======> > What filler is in your capsules? It may be your filler causing the gas.> > >

..

[Guest guest]

Does anyone have any info - specifically the plaintiff's attorney's

name for a case heard in Montgomery County, MD - Bligen v Voss,

case#263744

March 29, 2007? Have heard that defense 'expert' Gots was

barred from testifying and need to know why - hopefully by tomorrow.

Thanks,

Sherry

[Guest guest]

Well, I was trying to search the site to find the calendar so I could see what

was on the docket on 3/31.... Didn't find that, but DID find this:

http://www.montgomerycountymd.gov/mc/judicial/circuit/services/crtadmin/techsrv/\

technica.html

~Haley

wiedb <wiedb@...> wrote: Does anyone

have any info - specifically the plaintiff's attorney's

name for a case heard in Montgomery County, MD - Bligen v Voss,

case#263744

March 29, 2007? Have heard that defense 'expert' Gots was

barred from testifying and need to know why - hopefully by tomorrow.

Thanks,

Sherry

~Haley

[Guest guest]

Hi , I banded my baby at 12mm of assymetry which I think is the same measurement that you are measuring at 11mm. This (from what I understand) is the difference between the back part of the right side of the head from the forehead and the back side of the head from the forhead, the amount of difference the flattening is making (not sure if that make sense). My sons were off originally 10mm,where I think you're saying your son is a 6. We graduated out of our Starband in 5 1/2 months with 3.4mm of assymetry and 4mm for the ears. I would recomend banding now if they'd let you.......however it sounds like they may make you wait for him to be closer to 4mths, which is normal from what I hear. Hope that helps a little. Mother to , Starbanded

1/11/07-5/23/07sranderson22us <stephranderson@...> wrote: Hi-I've posted here before and have some new info that I need help understanding. Here's the background...I'll try to be brief!We noticed Owen only looked to the left very early on. At 2 w I brought him to the peds, we saw the NP. She turned his head to the right and said, no, his head moves, he's fine.At 6 w I brought him back and saw Ped A (not my older daughter's ped). He said, yes, you're correct, he has torticollis. He gave me two

sheets of exercises (for both right and left!) and said go home and do these or he will end up in a helmet (it wasn't as harsh sounding as it sounds in type). We started the exercises at home.I spoke w/a friend whose son had tort and plag. and she said, get a PT eval now. She came to visit and showed me that his ears are assymetrical.We saw the PT at 8 w and she said, yes he definitely needs PT. She again showed me the ear assymetry, and also agreed he has a slight flat spot and she also showed me that his forehead has a bulge, his eyes are slightly different and that he has a cheek bulge. We hadn't noticed the facial assymetry on our own, but saw it when it was pointed out.Later that week we saw Ped B (my 2.5y/o daughter's ped) for Owen's 2 mo appt. It was awful. She said his head is perfectly round, he has no facial assymetry and no ear assymetry (this is the oen that gets me the most b/c the ears

are SO obvious.) When I said that the PT saw all this, she actually said, you need to be careful ppl will see what they are looking for! She went on to say that since we'd started PT we could continue, it wasn't going ot hurt anything, but all torticollis goes away on it's own!I was so upset at this point, I spoke to my friend againand posted here and got the advice to go to CT for an eval. We went yesterday (Owen is now 11w) She completely agreed w/the PT. Her report says he has, plagiocephaly, L occipital flattening, L anterior ear shift, R frontal flattening, anterior orbit shift (she checked in the middle on that one), No bi-temporal pinching, Favors head turning L, Yes parietal narrowing, Right eye fissure narrowed and left head tilting.They also took photos and measurements for our insurance. She said that CT doesn't use measurements but our ins requires them. His Cephalic Index width to length was just

over 1 standard deviation. He was 5mm off the "traditional measurement". The insurance measurement (cranial vault) was 11 mm off (they cover the band at 10mm). His mid-face was 2mm off which she said was normal and his skull base (ear to under nose) was 6mm off. Her reccomendation is that we continue PT and repostioning (hard b/c of the tort) and come back in a month. I asked if he looked the same in a month and he was her baby what she would do and she said she'd do the band. She said he'd probably be in it for about 6 weeks. She also said the ears are really stubborn, but it would definitely help the forehead.I'm so confused on so many levels! First, can someone explain the meausrements to me? Which is the main number that I read about in most of these posts? Do most people band w/these numbers? I know his isn't severe. I can't figure out cosmetically how important this is in his case. I'm assuming

I can trust CT even though their business is making the bands?Any advice on the ped issue?Thank you so much for any help/advice/insight you can share! "In the depths of winter, I finally found there was in me an invincible summer."

[Guest guest]

The 11mm is the measurement that you see in most posts when

referring to the degree of assymetry. The one standard deviation

off sounds like brachy? We banded our son at 7.5 months with 8mm

assymetry. I am SO glad we did...his head looks great. Most people

didn't notice his head but I did. As for the ped., I would change

ped.'s unless you like your 2.5 daughter's ped. other than this

issue. Can CT send the measurements to the ped.? Maybe then your

ped. would write the script. This is what we did. Although, I thnk

our ped. would have written the script even without the measurements

because if the head didn't improve by 9 months he was going to send

us. We chose to do it sooner because CT says 5 months is a great

age to band and I had an RN friend that asked if our ped. was okay

with my son's headshape at 6.5 months. We caught a great growth

spurt so our son (even though he started late) only wore the band

8weeks.

Good luck in your decision.

> >

> > Hi-

> > I've posted here before and have some new info that I need help

> > understanding. Here's the background...I'll try to be brief!

> >

> > We noticed Owen only looked to the left very early on. At 2 w I

> > brought him to the peds, we saw the NP. She turned his head to

the

> > right and said, no, his head moves, he's fine.

> >

> > At 6 w I brought him back and saw Ped A (not my older daughter's

> > ped). He said, yes, you're correct, he has torticollis. He gave

me

> > two sheets of exercises (for both right and left!) and said go

home

> > and do these or he will end up in a helmet (it wasn't as harsh

> > sounding as it sounds in type). We started the exercises at home.

> >

> > I spoke w/a friend whose son had tort and plag. and she said,

get a

> > PT eval now. She came to visit and showed me that his ears are

> > assymetrical.

> >

> > We saw the PT at 8 w and she said, yes he definitely needs PT.

She

> > again showed me the ear assymetry, and also agreed he has a

slight

> > flat spot and she also showed me that his forehead has a bulge,

his

> > eyes are slightly different and that he has a cheek bulge. We

hadn't

> > noticed the facial assymetry on our own, but saw it when it was

> > pointed out.

> >

> > Later that week we saw Ped B (my 2.5y/o daughter's ped) for

Owen's 2

> > mo appt. It was awful. She said his head is perfectly round, he

has

> > no facial assymetry and no ear assymetry (this is the oen that

gets

> > me the most b/c the ears are SO obvious.) When I said that the

PT saw

> > all this, she actually said, you need to be careful ppl will see

what

> > they are looking for! She went on to say that since we'd started

PT

> > we could continue, it wasn't going ot hurt anything, but all

> > torticollis goes away on it's own!

> >

> > I was so upset at this point, I spoke to my friend againand

posted

> > here and got the advice to go to CT for an eval. We went

yesterday

> > (Owen is now 11w) She completely agreed w/the PT. Her report

says he

> > has, plagiocephaly, L occipital flattening, L anterior ear

shift, R

> > frontal flattening, anterior orbit shift (she checked in the

middle

> > on that one), No bi-temporal pinching, Favors head turning L,

Yes

> > parietal narrowing, Right eye fissure narrowed and left head

tilting.

> >

> > They also took photos and measurements for our insurance. She

said

> > that CT doesn't use measurements but our ins requires them. His

> > Cephalic Index width to length was just over 1 standard

deviation. He

> > was 5mm off the " traditional measurement " . The insurance

measurement

> > (cranial vault) was 11 mm off (they cover the band at 10mm). His

mid-

> > face was 2mm off which she said was normal and his skull base

(ear to

> > under nose) was 6mm off.

> >

> > Her reccomendation is that we continue PT and repostioning (hard

b/c

> > of the tort) and come back in a month. I asked if he looked the

same

> > in a month and he was her baby what she would do and she said

she'd

> > do the band. She said he'd probably be in it for about 6 weeks.

She

> > also said the ears are really stubborn, but it would definitely

help

> > the forehead.

> >

> > I'm so confused on so many levels! First, can someone explain

the

> > meausrements to me? Which is the main number that I read about

in

> > most of these posts? Do most people band w/these numbers? I know

his

> > isn't severe. I can't figure out cosmetically how important this

is

> > in his case. I'm assuming I can trust CT even though their

business

> > is making the bands?

> >

> > Any advice on the ped issue?

> >

> > Thank you so much for any help/advice/insight you can share!

> >

> >

>

[Guest guest]

Hello,

I understand what you went thorugh and i remember your post before....I

replied because I somewhat got the same experience with my ped....and then

we swtiched.

If you saw our daughter's face you can't reallly notice it " as " much....but

the back of it you could when is wet she had a very flat spot on the back

right side, but because she has sooooooo much hair it was not so noticeable.

We got her examined and it pretty much came to the decision of...If we as

paretns felt and knew that maybe in the future when she is older it might

cause her an issue and she was going to be teased or feel " bad " , then we

should try our best to correct it now that she's a baby and she can't really

understand what's going on or why she's wearing it.

She's been wearing the band for about 2 months now and the difference is

HUGE, the flt spot is pretty much even to the other side, overall her head

looks rounder.

Fanny

Angelina 10 months

>From: " sranderson22us " <stephranderson@...>

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: need help!

>Date: Fri, 05 Oct 2007 18:07:32 -0000

>

>Hi-

>I've posted here before and have some new info that I need help

>understanding. Here's the background...I'll try to be brief!

>

>We noticed Owen only looked to the left very early on. At 2 w I

>brought him to the peds, we saw the NP. She turned his head to the

>right and said, no, his head moves, he's fine.

>

>At 6 w I brought him back and saw Ped A (not my older daughter's

>ped). He said, yes, you're correct, he has torticollis. He gave me

>two sheets of exercises (for both right and left!) and said go home

>and do these or he will end up in a helmet (it wasn't as harsh

>sounding as it sounds in type). We started the exercises at home.

>

>I spoke w/a friend whose son had tort and plag. and she said, get a

>PT eval now. She came to visit and showed me that his ears are

>assymetrical.

>

>We saw the PT at 8 w and she said, yes he definitely needs PT. She

>again showed me the ear assymetry, and also agreed he has a slight

>flat spot and she also showed me that his forehead has a bulge, his

>eyes are slightly different and that he has a cheek bulge. We hadn't

>noticed the facial assymetry on our own, but saw it when it was

>pointed out.

>

>Later that week we saw Ped B (my 2.5y/o daughter's ped) for Owen's 2

>mo appt. It was awful. She said his head is perfectly round, he has

>no facial assymetry and no ear assymetry (this is the oen that gets

>me the most b/c the ears are SO obvious.) When I said that the PT saw

>all this, she actually said, you need to be careful ppl will see what

>they are looking for! She went on to say that since we'd started PT

>we could continue, it wasn't going ot hurt anything, but all

>torticollis goes away on it's own!

>

>I was so upset at this point, I spoke to my friend againand posted

>here and got the advice to go to CT for an eval. We went yesterday

>(Owen is now 11w) She completely agreed w/the PT. Her report says he

>has, plagiocephaly, L occipital flattening, L anterior ear shift, R

>frontal flattening, anterior orbit shift (she checked in the middle

>on that one), No bi-temporal pinching, Favors head turning L, Yes

>parietal narrowing, Right eye fissure narrowed and left head tilting.

>

>They also took photos and measurements for our insurance. She said

>that CT doesn't use measurements but our ins requires them. His

>Cephalic Index width to length was just over 1 standard deviation. He

>was 5mm off the " traditional measurement " . The insurance measurement

>(cranial vault) was 11 mm off (they cover the band at 10mm). His mid-

>face was 2mm off which she said was normal and his skull base (ear to

>under nose) was 6mm off.

>

>Her reccomendation is that we continue PT and repostioning (hard b/c

>of the tort) and come back in a month. I asked if he looked the same

>in a month and he was her baby what she would do and she said she'd

>do the band. She said he'd probably be in it for about 6 weeks. She

>also said the ears are really stubborn, but it would definitely help

>the forehead.

>

>I'm so confused on so many levels! First, can someone explain the

>meausrements to me? Which is the main number that I read about in

>most of these posts? Do most people band w/these numbers? I know his

>isn't severe. I can't figure out cosmetically how important this is

>in his case. I'm assuming I can trust CT even though their business

>is making the bands?

>

>Any advice on the ped issue?

>

>Thank you so much for any help/advice/insight you can share!

>

>

>

>

[Guest guest]

, I remember your post from before. I was the

one who told you that your situation sounds just like

mine did! It's a little strange actually that our

stories are so similar.

> I spoke w/a friend whose son had tort and plag. and

she said, get a PT eval now.

This was VERY wise advice that she gave you

> She went on to say that since we'd started PT we

could continue, it wasn't going ot hurt anything, but

all torticollis goes away on it's own!

The above statement, in my opinion, is untrue. Some

untreated torticollis can become so severe that

surgery has to be done to fix the muscles!

> Her reccomendation is that we continue PT and

repostioning (hard b/c of the tort) and come back in

a month.

This is from what I've been told a very normal

recommendation. Most insurance companies actually

require that repositioning be tried and documented

before they will cover banding.

> I'm so confused on so many levels! First, can

someone explain the meausrements to me? Which is the

main number that I read about in most of these posts?

1 cm of asymmetry is the same as 10 mm.

normal 0-3 mm

very mild <6 mm

mild - 6-10 mm

moderate - 10-15 mm

severe - 15+ mm

CI is the Cephalic Index, also sometimes called the

Cephalic Ratio which is

Cranial Breadth/Cranial Length.

ideal ratio - 78%

normal - 73-83%

moderate - 83.1% to 87.9%

severe - 88% and higher

Somewhere I had a chart that showed all of the

different points of the measurements and now I can't

find it...I'll send it if I come across is later. If

you call CT though your therapist can explain them all

to you. I realized once I got home that I didn't

understand all the msrmts either. I called back and

they were more than happy to explain them to me again

>Do most people band w/these numbers? I know his isn't

severe. I can't figure out cosmetically how important

this is in his case.

I guess ultimately that's call you have to make! My

sons was severe so it was an easy decision. But I

think if you don't band you'd have to be vigilant

about his tummy time so that he doesn't get worse. The

CT people seem very knowledgeable to me. At CT all

they do is DOC bands so I would say based on your

measurements you can verify that they're not just

trying to make money off of you.

> Any advice on the ped issue?

I would at least look for a new ped. I did and it's

taken me two months but I found one.

Ultimately my thoughts and opinion are this...wether

or not you decide to band you need to make sure the

torticollis is being treated and responding well to

treatment. It's very important in my opinion to get

the torticollis gone!

________________________________________________________________________________\

____

Need a vacation? Get great deals

to amazing places on Travel.

http://travel./

[Guest guest]

I justwanted to say thank you so much to everyone for your advice.

This board is such a wonderful resource.

>

> Hi-

> I've posted here before and have some new info that I need help

> understanding. Here's the background...I'll try to be brief!

>

> We noticed Owen only looked to the left very early on. At 2 w I

> brought him to the peds, we saw the NP. She turned his head to the

> right and said, no, his head moves, he's fine.

>

> At 6 w I brought him back and saw Ped A (not my older daughter's

> ped). He said, yes, you're correct, he has torticollis. He gave me

> two sheets of exercises (for both right and left!) and said go home

> and do these or he will end up in a helmet (it wasn't as harsh

> sounding as it sounds in type). We started the exercises at home.

>

> I spoke w/a friend whose son had tort and plag. and she said, get a

> PT eval now. She came to visit and showed me that his ears are

> assymetrical.

>

> We saw the PT at 8 w and she said, yes he definitely needs PT. She

> again showed me the ear assymetry, and also agreed he has a slight

> flat spot and she also showed me that his forehead has a bulge, his

> eyes are slightly different and that he has a cheek bulge. We

hadn't

> noticed the facial assymetry on our own, but saw it when it was

> pointed out.

>

> Later that week we saw Ped B (my 2.5y/o daughter's ped) for Owen's

2

> mo appt. It was awful. She said his head is perfectly round, he has

> no facial assymetry and no ear assymetry (this is the oen that gets

> me the most b/c the ears are SO obvious.) When I said that the PT

saw

> all this, she actually said, you need to be careful ppl will see

what

> they are looking for! She went on to say that since we'd started PT

> we could continue, it wasn't going ot hurt anything, but all

> torticollis goes away on it's own!

>

> I was so upset at this point, I spoke to my friend againand posted

> here and got the advice to go to CT for an eval. We went yesterday

> (Owen is now 11w) She completely agreed w/the PT. Her report says

he

> has, plagiocephaly, L occipital flattening, L anterior ear shift, R

> frontal flattening, anterior orbit shift (she checked in the middle

> on that one), No bi-temporal pinching, Favors head turning L, Yes

> parietal narrowing, Right eye fissure narrowed and left head

tilting.

>

> They also took photos and measurements for our insurance. She said

> that CT doesn't use measurements but our ins requires them. His

> Cephalic Index width to length was just over 1 standard deviation.

He

> was 5mm off the " traditional measurement " . The insurance

measurement

> (cranial vault) was 11 mm off (they cover the band at 10mm). His

mid-

> face was 2mm off which she said was normal and his skull base (ear

to

> under nose) was 6mm off.

>

> Her reccomendation is that we continue PT and repostioning (hard

b/c

> of the tort) and come back in a month. I asked if he looked the

same

> in a month and he was her baby what she would do and she said she'd

> do the band. She said he'd probably be in it for about 6 weeks.

She

> also said the ears are really stubborn, but it would definitely

help

> the forehead.

>

> I'm so confused on so many levels! First, can someone explain the

> meausrements to me? Which is the main number that I read about in

> most of these posts? Do most people band w/these numbers? I know

his

> isn't severe. I can't figure out cosmetically how important this is

> in his case. I'm assuming I can trust CT even though their business

> is making the bands?

>

> Any advice on the ped issue?

>

> Thank you so much for any help/advice/insight you can share!

>

>