Question

[Guest guest]

i don't think i have any recent ones that would show the assemetry. when you

look at his head from the top you can see the left side ( non-tort ) is a

liitle bigger, the ear, chin and eye on the tort side are a bit smaller. i

am going to take some pics today just as documentation. i will get them

developed and put them on. Rosie

>From: " stripes6060 " <taime@...>

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: Re: question

>Date: Sat, 17 May 2003 03:36:38 -0000

>

>Hi,

>Welcome to the group! Would it be possible for you to email us a

>picture of your son?

>

>--- In Plagiocephaly , " rwhitchy " <rwhitchy@c...>

>wrote:

> > My son was diagnosed with Torticollis 4 weeks ago and is in his

> > second week of PT. I don't really see a " flat spot " on his head

>but

> > he has uneven facial features( forehead, chin, eye, ear). Is this

> > still plagiocephaly? The pediatrician did not say anything about

>it,

> > but our PT has mentioned him needing a helmet. It is very

>mild...not

> > noticable to others unless I point it out. We go back for his 6

>month

> > well-check-up in 2 weeks. Any response would be helpful.

>

_________________________________________________________________

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[Guest guest]

I thought the helmet would be to even out the forehead....I am so confused .

Rosie

>From: " stripes6060 " <taime@...>

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: Re: question

>Date: Sat, 17 May 2003 22:49:16 -0000

>

>Rosie,

>Why would the PT reccommend a helmet if he doesn't have a flat spot?

>I'm a little confused. I think I'll understand more once I see his

>pictures.

>

>

> > i don't think i have any recent ones that would show the assemetry.

>when you

> > look at his head from the top you can see the left side ( non-

>tort ) is a

> > liitle bigger, the ear, chin and eye on the tort side are a bit

>smaller. i

> > am going to take some pics today just as documentation. i will

>get them

> > developed and put them on. Rosie

> >

> >

> >

> >

> >

> > >From: " stripes6060 " <taime@o...>

> > >Reply-Plagiocephaly

> > >Plagiocephaly

> > >Subject: Re: question

> > >Date: Sat, 17 May 2003 03:36:38 -0000

> > >

> > >Hi,

> > >Welcome to the group! Would it be possible for you to email us a

> > >picture of your son?

> > >

> > >--- In Plagiocephaly , " rwhitchy " <rwhitchy@c...>

> > >wrote:

> > > > My son was diagnosed with Torticollis 4 weeks ago and is in his

> > > > second week of PT. I don't really see a " flat spot " on his head

> > >but

> > > > he has uneven facial features( forehead, chin, eye, ear). Is

>this

> > > > still plagiocephaly? The pediatrician did not say anything about

> > >it,

> > > > but our PT has mentioned him needing a helmet. It is very

> > >mild...not

> > > > noticable to others unless I point it out. We go back for his 6

> > >month

> > > > well-check-up in 2 weeks. Any response would be helpful.

> > >

> >

> > _________________________________________________________________

> > STOP MORE SPAM with the new MSN 8 and get 2 months FREE*

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>

_________________________________________________________________

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[Guest guest]

Rosie,

A helmet could even out the forehead but a band needs holding points

in order to work. That is why Cranial Tech won't band a baby if they

are too mild. A baby needs to have prominent spots on the skull for

the band to hold on to. I hope that makes sense.

> > > i don't think i have any recent ones that would show the

assemetry.

> >when you

> > > look at his head from the top you can see the left side ( non-

> >tort ) is a

> > > liitle bigger, the ear, chin and eye on the tort side are a bit

> >smaller. i

> > > am going to take some pics today just as documentation. i will

> >get them

> > > developed and put them on. Rosie

> > >

> > >

> > >

> > >

> > >

> > > >From: " stripes6060 " <taime@o...>

> > > >Reply-Plagiocephaly

> > > >Plagiocephaly

> > > >Subject: Re: question

> > > >Date: Sat, 17 May 2003 03:36:38 -0000

> > > >

> > > >Hi,

> > > >Welcome to the group! Would it be possible for you to email us

a

> > > >picture of your son?

> > > >

> > > >--- In Plagiocephaly , " rwhitchy "

<rwhitchy@c...>

> > > >wrote:

> > > > > My son was diagnosed with Torticollis 4 weeks ago and is in

his

> > > > > second week of PT. I don't really see a " flat spot " on his

head

> > > >but

> > > > > he has uneven facial features( forehead, chin, eye, ear).

Is

> >this

> > > > > still plagiocephaly? The pediatrician did not say anything

about

> > > >it,

> > > > > but our PT has mentioned him needing a helmet. It is very

> > > >mild...not

> > > > > noticable to others unless I point it out. We go back for

his 6

> > > >month

> > > > > well-check-up in 2 weeks. Any response would be helpful.

> > > >

> > >

> > >

_________________________________________________________________

> > > STOP MORE SPAM with the new MSN 8 and get 2 months FREE*

> > > http://join.msn.com/?page=features/junkmail

> >

>

> _________________________________________________________________

> Protect your PC - get McAfee.com VirusScan Online

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[Guest guest]

It kind of makes sense. I am still not sure. We see the dr. next week for

's 6 month check-up. This is is first meeting with the dr. since we

started Pt and all. I guess I should start making a list of questions.

Thanks, you are the only response I got to my question thus far.

Rosie

>From: " stripes6060 " <taime@...>

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: Re: question

>Date: Sun, 18 May 2003 00:52:04 -0000

>

>Rosie,

>A helmet could even out the forehead but a band needs holding points

>in order to work. That is why Cranial Tech won't band a baby if they

>are too mild. A baby needs to have prominent spots on the skull for

>the band to hold on to. I hope that makes sense.

>

>

> > > > i don't think i have any recent ones that would show the

>assemetry.

> > >when you

> > > > look at his head from the top you can see the left side ( non-

> > >tort ) is a

> > > > liitle bigger, the ear, chin and eye on the tort side are a bit

> > >smaller. i

> > > > am going to take some pics today just as documentation. i will

> > >get them

> > > > developed and put them on. Rosie

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > >From: " stripes6060 " <taime@o...>

> > > > >Reply-Plagiocephaly

> > > > >Plagiocephaly

> > > > >Subject: Re: question

> > > > >Date: Sat, 17 May 2003 03:36:38 -0000

> > > > >

> > > > >Hi,

> > > > >Welcome to the group! Would it be possible for you to email us

>a

> > > > >picture of your son?

> > > > >

> > > > >--- In Plagiocephaly , " rwhitchy "

><rwhitchy@c...>

> > > > >wrote:

> > > > > > My son was diagnosed with Torticollis 4 weeks ago and is in

>his

> > > > > > second week of PT. I don't really see a " flat spot " on his

>head

> > > > >but

> > > > > > he has uneven facial features( forehead, chin, eye, ear).

>Is

> > >this

> > > > > > still plagiocephaly? The pediatrician did not say anything

>about

> > > > >it,

> > > > > > but our PT has mentioned him needing a helmet. It is very

> > > > >mild...not

> > > > > > noticable to others unless I point it out. We go back for

>his 6

> > > > >month

> > > > > > well-check-up in 2 weeks. Any response would be helpful.

> > > > >

> > > >

> > > >

>_________________________________________________________________

> > > > STOP MORE SPAM with the new MSN 8 and get 2 months FREE*

> > > > http://join.msn.com/?page=features/junkmail

> > >

> >

> > _________________________________________________________________

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>

_________________________________________________________________

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[Guest guest]

we go on the 27th. Our diagnosis actually came about in a strange way. I had

brought in for an ear infection last month. I mentioned to the

dr.(not our usual one) that I felt he was not holding his head up very well

for a 5 month old. She took a quick look at him and agreed and wrote a

script for PT with a diagnosis of poor head/neck control. I was having a

hard time getting into a PT with that diagnosis. They were telling me we

were not a priority. So, I called a friend who is a ped. rehab dr. She was a

PT before she got her med. degree. Anyway. we met up, she looked him over

and immed. said Torticollis, and pointed out to me the assemetry. From there

we went back to our regular ped., and told him what she had said. He agreed(

hopefully with embarrassment that he did not see it), and wrote a new script

with a new diagnosis and we got in to the PT. AND..here we are....2 weeks

into PT, with alot of questions .... sorry so long, but it may help explain

where I am in all of this...

Rosie

>From: " stripes6060 " <taime@...>

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: Re: question

>Date: Sun, 18 May 2003 02:12:23 -0000

>

>Hi Rosie,

>The weekends are really quiet on the board. You'll get a lot of

>replies on Monday, I'm sure. Here is a link to a list of questions

>you can ask the doctor.

>http://www.cappskids.org/QuestionsForTheDoctorAndOrthotist.htm

>What day is your appointment on? Please let us know how it goes.

>

>

> > > > > > i don't think i have any recent ones that would show the

> > >assemetry.

> > > > >when you

> > > > > > look at his head from the top you can see the left side (

>non-

> > > > >tort ) is a

> > > > > > liitle bigger, the ear, chin and eye on the tort side are a

>bit

> > > > >smaller. i

> > > > > > am going to take some pics today just as documentation. i

>will

> > > > >get them

> > > > > > developed and put them on. Rosie

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > > >From: " stripes6060 " <taime@o...>

> > > > > > >Reply-Plagiocephaly

> > > > > > >Plagiocephaly

> > > > > > >Subject: Re: question

> > > > > > >Date: Sat, 17 May 2003 03:36:38 -0000

> > > > > > >

> > > > > > >Hi,

> > > > > > >Welcome to the group! Would it be possible for you to

>email us

> > >a

> > > > > > >picture of your son?

> > > > > > >

> > > > > > >--- In Plagiocephaly , " rwhitchy "

> > ><rwhitchy@c...>

> > > > > > >wrote:

> > > > > > > > My son was diagnosed with Torticollis 4 weeks ago and

>is in

> > >his

> > > > > > > > second week of PT. I don't really see a " flat spot " on

>his

> > >head

> > > > > > >but

> > > > > > > > he has uneven facial features( forehead, chin, eye,

>ear).

> > >Is

> > > > >this

> > > > > > > > still plagiocephaly? The pediatrician did not say

>anything

> > >about

> > > > > > >it,

> > > > > > > > but our PT has mentioned him needing a helmet. It is

>very

> > > > > > >mild...not

> > > > > > > > noticable to others unless I point it out. We go back

>for

> > >his 6

> > > > > > >month

> > > > > > > > well-check-up in 2 weeks. Any response would be helpful.

> > > > > > >

> > > > > >

> > > > > >

> > >_________________________________________________________________

> > > > > > STOP MORE SPAM with the new MSN 8 and get 2 months FREE*

> > > > > > http://join.msn.com/?page=features/junkmail

> > > > >

> > > >

> > > >

>_________________________________________________________________

> > > > Protect your PC - get McAfee.com VirusScan Online

> > > > http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963

> > >

> >

> > _________________________________________________________________

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>

_________________________________________________________________

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[Guest guest]

Hello and welcome to the group.

Hmmm, if he has facial asymmetry then it's very likely that he has

flatness on one side of his head. Sometimes it is hard to see. Maybe

you could take a top down (birdseye view) picture and email it to the

group?

If there is facial asymmetry then visiting about it with your ped

would probably be a good idea. Plagio is VERY common in children with

tort. Be aware that not all peds have any clue about plagio.

Hopefully yours does. Helmets/bands work very well for correcting

facial asymmetry so it might be an option you wish to pursure.

Good luck with your decision and please let us know what happens

next. Sounds like you have a very knowledgable PT.

Marci (Mom to )

Oklahoma

--- In Plagiocephaly , " rwhitchy " <rwhitchy@c...>

wrote:

> My son was diagnosed with Torticollis 4 weeks ago and is in his

> second week of PT. I don't really see a " flat spot " on his head

but

> he has uneven facial features( forehead, chin, eye, ear). Is this

> still plagiocephaly? The pediatrician did not say anything about

it,

> but our PT has mentioned him needing a helmet. It is very

mild...not

> noticable to others unless I point it out. We go back for his 6

month

> well-check-up in 2 weeks. Any response would be helpful.

[Guest guest]

In a message dated 5/17/2003 6:44:09 PM Eastern Daylight Time, rosiewhitcher@... writes:

when you

look at his head from the top you can see the left side ( non-tort ) is a

liitle bigger, the ear, chin and eye on the tort side are a bit smaller.

Hi Rosie,

Usually the tort side looks a bit smaller for a few reasons as I have gathered- the child favors the non-tort side, which creates a flat back on that side- this constant pressure pushes the non-tort side forward, making the features on the non-tort side more prominent (eye is larger, etc). Also, the SCM muscle (tort side) can be so tight, that it actually pulls down the facial and ear features, and pulls up the upper torso, in some cases. If your seeing asymmetry and can't spot the flatness, I would wet the hair down and stand from above, with your index fingers placed where the ears are, this may show you some ear asymmetry, and the flattening should be more noticeable. Good luck!

'mom

[Guest guest]

Ana,

Most cases of lupus induced by antibiotics are from Minocycline, at least

that's what the literature says. If you're feeling well, I wouldn't stress too

much about it. Is it possible it's rosacea???? The butterfly rash and roacea

can look very similar.

Have you noticed any correlations, i.e. it appears after sun exposure, etc.?

Patrice

[Guest guest]

Hi

I have not heard the Zithromax will do this.( drug induced Lupus)

It is usually associated with the tetracyclines as far as I know.

I am on Minocin almost 7yrs for lupus and RA and not had a probelm.

When I hear rash..have you thought yeast? I know I get severe yeast

problems when I was put on Zithromax.

I know it sounds like the butterfly mask but it could be rosacea

(sp??) as well. Doxy works for that.

Just giving you my ideas..no professional here.

Love

Marge

> Dear group,

> Has anybody ever developed lupus, or lupus-like symptoms after

being on the AP a long time?

> I've been in remission for about a year and a half now, for RA.

I'm taking a maintenance dose of Zythromax, 250mgs every 5 days, and

lately I've developed the red mask like rash over my face. I'm

trying really hard not to worry too much before I know what this is,

but I'm failing miserably. Any and all information would be greatly

appreciated.

> Ana in Alaska

>

> P.S. I don't have any other symptoms, like fatigue and joint pain.

>

>

[Guest guest]

Hi

O posterd to you but it did not go up.

I will try again.

The Zithromax I do not think does cause this as much as the

tetracyclines. What about yeast or the disease rosacea? They use doxy

for that. Have you tried switching antibitics? I think it may be a

thought to consider with your doc

Love

Marge

> Dear group,

> Has anybody ever developed lupus, or lupus-like symptoms after

being on the AP a long time?

> I've been in remission for about a year and a half now, for RA.

I'm taking a maintenance dose of Zythromax, 250mgs every 5 days, and

lately I've developed the red mask like rash over my face. I'm

trying really hard not to worry too much before I know what this is,

but I'm failing miserably. Any and all information would be greatly

appreciated.

> Ana in Alaska

>

> P.S. I don't have any other symptoms, like fatigue and joint pain.

>

>

[Guest guest]

Dear Susie & Jan:

Hi, my name is Colletti. I read your posts and it sounds like to me

that you both have had an indention in your arms and legs from pressure. Seems

like maybe you were crossing your legs or lying on your arms, and that may be

causing what you refer to as dents. If you have swelling in your legs this

can easily happen if you cross them. Don't be alarmed about it but do let your

Doctors know about it.

Take care, Anjillah@...

[Guest guest]

Thanks, Anjillah, I plan on letting the doctor know on my appointment on the

5th. It was so strange to have such a large chunk missing though. Take

care...Jan

ANJILLAH@... wrote:Dear Susie & Jan:

Hi, my name is Colletti. I read your posts and it sounds like to me

that you both have had an indention in your arms and legs from pressure. Seems

like maybe you were crossing your legs or lying on your arms, and that may be

causing what you refer to as dents. If you have swelling in your legs this

can easily happen if you cross them. Don't be alarmed about it but do let your

Doctors know about it.

Take care, Anjillah@...

[Guest guest]

, WBC will elevate in a Herxheimer.

Ethel

rheumatic question

> hi....does anyone know if the WBC increases with a herx reaction?

> is hard for me to tell if i have a virus or infection or i am

> herxing. my WBC shot up 2 fold. if i am herxing i would like to

> decrease my dosage of some things. i am on 100 mg minocin MWF...300

> mg clindamycin MWF...and 100 mg diflucan daily. and today i start

> clindamycin IV's. phew...thats a lot. i could very well be

> herxing. but viruses are going around too. any input is always

> appreciated!

>

> rachael

> dermatomyositis

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

I never heard of CMT Magazine. How do I get a copy. The only magizine I get

is froM MDA and its called QUEST

Elaine

[Guest guest]

Hi ;

Yes I did have a shot because my whole body was swollen head to toe and

I had gained 14% of my body weight due to the edema and the doc was getting

scared as

nothing was helping.It worked very well and took 6 months to wear off and the

stiffness lessened dramatically but later the stiffness came back without the

swelling.

Lynne

Courtgav@... wrote:

>

> Hi

> Has anyone had and IM shot of Cortisone (Depo Medrol sp?) to get themselves

> out of a very bad flare. lf so, did it work, did you get worse, what were the

> results? Would appreciate any help you can give. l am on prednisone also.

>

>

>

>

[Guest guest]

Hi, ,

Yes, I've had a couple of IM shots of steroids-not sure what kind but they

were very helpful both times. Once it was for a rash and the 2nd time it

was for my swollen hands, wrists and feet, due to RA flare.

However, they did make me pretty hyper for a couple of nights. I much

prefer the " Dose-Paks " with the pills, usu. start at 40 mg and then dwindle

down to 4 mg on the last day. I usually cut it in half as 20 mg down to 4-5

mg on the last day is plenty for me, and the lower the dosage, the easier it

is on my body, as far as side effects. Plus, I can save the other pills for

future flares and not have to go the d--- dr's office. Cause I HATE going!

Good luck!

Sally in Little Rock

Original Message -----

From: <Courtgav@...>

<rheumatic >

Sent: Thursday, August 21, 2003 10:02 AM

Subject: rheumatic Question

> Hi

> Has anyone had and IM shot of Cortisone (Depo Medrol sp?) to get

themselves

> out of a very bad flare. lf so, did it work, did you get worse, what were

the

> results? Would appreciate any help you can give. l am on prednisone

also.

>

>

>

>

>

[Guest guest]

OK..I`m confused. New to this EFA stuff..what is the appropriate dose for a 4

year old.

I think I am giving her too much. 3 capsules a day. The teacher is noticing

very positive changes in attention and focus and her appetite has

increased.(she is gtube fed when she doesn't eat enough).

Thanks..this list is great.

Dana

`s mom 4-ACC, SOD, HYDRO(SHUNTED), CHIARI(DECOMPRESSED),

SBO,GTUBE,SEIZURES,CDLS..and a VERY smart cookie!!!

ALSO, ALI 6, MIKE 15,JOHN 17, AND AMANDA 18

WIFE TO KEVIN-who is battling cancer

[Guest guest]

Hi Dana,

That is a bit higher than most of us start with, however many of us

use three capsules or more over time. (Tanner is on 4 ProEFA and 2

ProEPA which I don't tell often - I don't want new people to start

there. He's been on the oils for over 4 years now and we got to

this over time) It now appears that children under around five can

start on one capsule -but in children that are older than five -they appear

to do better starting on one for about a week and then going to two capsules.

How long has your child been on the oils? What does her doctor say

about the dosage? Have there been any negative aspects? Have you ever

lowered the dosage, and if so was there a regression?

Here again is a message on what 'most' do that works. Of course

each child is unique -so what works for most is not for all!

~~~~~~~~~~~~~~~~~~~~~~~~~

Brand names are not important -only dosage -formula - purity. The

formula we found to be best is in the archives here and in The Late

Talker book (Co-authored by developmental pediatrician and Medical

Director for NYC Early Intervention Marilyn Agin MD)

http://www.speech-express.com/late.talker.html presented at The

First Apraxia Conference with leading PhDs in this area sponsored by

CHERAB http://www.cherab.org/news/scientific.html -and listed

below.

EFA stands for essential fatty acid -kind of an umbrella name for

all EFAs. (and for the person that asked -EPA stands for an Omega 3

PUFA found in fish called eicosapentaenoic acid -which is why we

will just all call it EPA!)

To answer your question in short -Nordic Naturals is the

manufacturer of ProEFA, ProDHA and ProEPA. ProEFA is an Omega 3 and

Omega 6 formula like Efalex and Eye Q -the only other two formulas

we hear positive feedback from in large numbers. Coromega is not

found to be as effective as the Omega 3/6 formulas -it's a pure

Omega 3) Like Coromega -ProDHA and ProEPA are both pure Omega 3

formulas. Most store bought EFAs are rancid, so be aware of this.

Oxygen and fish oil do not mix. Smell or taste (for the brave) fish

oils to compare and make sure the fish oil you use is pure. Again

most of us use ProEFA, Efalex or EyeQ -you can use others -just make

sure the company is reputable. Coramega is very pure -it's just that

it's only an Omega 3. If the oil you are giving your child smells

like rancid fish -it probably is. As you can imagine -it's hard

enough -and nasty enough -trying to give " pure " fish oil to a

toddler on a spoon!

Most of us found success with adding the ProEPA to the ProEFA -but

down the road a bit as talked about here

http://www.speech-express.com/alternative-therapy/efa-faqs.html

It is the CHERAB Foundation that found which dosage, and formula of

EFA worked the best for our children from feedbacks since 1999. You

can read more about this at http://www.cherab.org

http://www.cherab.org/news/scientific.html

Here are just two archived messages that I hope will also help you

to understand more about EFAs (in the long version). And while you

are searching for answers -ask your parents or grandparents -most of

them were given cod liver oil -a pure Omega 3 with DHA and EPA (also

now called DHA Jr. as a brand name!) as children.

" About the EFAs -once again brand name does not matter, brand name

does not matter, brand name does not matter, brand name does not

matter, did I tell you guys that brand name does not matter?

What matters when it comes to EFAs are only three things in my

opinion:

Formula

Dosage

Quality of the oils.

I will use the following examples with the brand name ProEFA since

that's the formula/dosage that seems to work the best for most of us

(Efalex and EyeQ are similar Omega 3/6 formulas that also have good

reports) For any brand name of Omega 3/6 formula -you could make

the same formula by mixing together fish oil and either primrose or

borage seed oil if you prefer -or as found -another brand

name with a similar formula (and I hope also a good quality)

If you mix two fish oils together which is fine if you know why you

are doing that: Look at the amount of DHA, EPA (Omega 3) and the

amount of GLA (Omega 6) and then add them all together to see what

formula and dosage you now have is. So for those of you that ask -

you can mix any brand names together you would like -however what

you could change is the three things above (dosage, formula and

*quality (*if one of the companies you start using has rancid oils

which is not uncommon when it comes to fish oils -so make sure all

brands you use are pure) Keep in mind in anecdotal feedback done by

parents from all over through CHERAB -that pure Omega 3 or pure

Omega 6 either showed no results -or very little results in almost

all cases. Pure Omega 3 would include pure cod liver oil, fish oil,

flax seed oil without any Omega 6. So even though there is only a

small amount of GLA (Omega 6) in the formulas we found to be

successful -GLA appears to be important to be there for some

reason. GLA has anti-inflammatory properties which perhaps enable

to DHA and EPA to get to where it's needed in the brain?

Adding extra EPA or DHA is different when you talk about mixing

oils. Adding an oil high in one of these to the basic ProEFA

formula EPA (Omega 3 such as ProEPA) or high in DHA (Omega 3 such

as ProDHA) will raise the EPA or the DHA higher in the formula -and

also raise the Omega 3 to Omega 6 slightly higher as well. With

your child this may be a good thing -or not a good thing -it depends

if you raise the DHA or the EPA. Adding primrose (Omega 6) or

borage seed oil (Omega 6) to the basic ProEFA formula will raise the

Omega 6 -which most of us found not to be a good thing for our

children.

Most of us found that raising the EPA slightly higher than the DHA

over the basic ProEFA formula was effective (a handful find raising

the DHA more to be better) -but most of us do this over time as

Deborah points out -not all at once. What this means is that

unfortunately -the formula most of us found to be the best over time

you can not yet purchase as a brand name -you have to

create...however fortionatly the basic Omega 3/6 brand name

formula's seem to work to start for almost all children (Efalex,

ProEFA and EyeQ)

Dosage of one capsule a day ProEFA that at the lowest dosage appears

to be the best -

148 mg EPA

99 mg DHA

40 mg GLA

Here is what many of us have found to be the best plan

anecdotally...start with the basic formula, one ProEFA a day, we

saw surges in a few days to three weeks which continued for months -

we then reached a plateau after around 6 months. At this point we

raised the dosage to two capsules of ProEFA a day and once again had

those surges which lasted again for months. When we reached the

next plateau after around a year, instead of going to three a day -

we squeezed 1/2 to one capsule of ProEPA into the 2 capsules of

ProEFA and for almost all of us that try -that created another surge.

Over time -you may raise the dosage up higher -and you may slightly

change the formula to raise the Omega 3 over the Omega 6 ratio -but

you need to know your own child, keep track of his progress through

both your own observations and that of the professionals -with the

advice of your child's doctor -to know what is best for him/her.

Here is an archived cut and paste message of mine -there are many

more in the archives both here -as well as more information at

http://www.cherab.org/information/indexinformation.html#diet

http://www.speechville.com

" in our group numerous children were on pure Omega 3 with little to

no results and then the same children responded amazingly well

within one to three weeks when given instead a formula with Omega 3

(DHA and EPA) and a " small " amount of Omega 6 (borage or primrose

oil)

The CHERAB Foundation first did a parent feedback which compared

pure Omega 3 (like cod live oil) to Omega 3/6 formulas (like ProEFA

or Efalex) Check the archives -most of the parents that used the cod

liver oil saw little to no difference -and then as stated above had

moderate to dramatic changes in one to three weeks when switched to

(or just started on) the Omega 3/6 formula. My son Tanner was one

of them. Before I knew the difference I just called all the (pure)

fish oil capsules I tried the " reject " oils and wondered to all why

they didn't work and Efalex or ProEFA (or EyeQ) did.

Why the changes? Only future research will tell. For now -I just

want all to know that if one doesn't work (like pure fish oil) or

work for long -switch to the formula that works for most of us.

Basic formula no matter what fish/borage or primrose formula you use

or make by combining oils:

EPA -150 to 250

DHA 100

GLA 50

If you raise the dosages -the ratio should still stay around the

same.

I believe this is important to note since most that " try " cod liver

oil or another fish oil that doesn't have Omega 6 may find that fish

oil doesn't " work " My point is that formula (dosage and quality)

are all that is important -and no matter what any expert believe in

theory -you can not argue with what we as parents see in our

children in reality.

As always -The proof is in the pudding. "

Homework -go watch Lorenzo's Oil.

=====

[Guest guest]

In a message dated 11/14/2003 10:43:35 PM Eastern Standard Time,

kiddietalk@... writes:

How long has your child been on the oils?

About a week

What does her doctor say

about the dosage?

I ran it all past the ped who said OK. I don`t think however I told him the

dosage. The problem if it is a problem, we have been through so much with

her Drs. really trust my judgment, which at times is very scary. I have

never been the type to ask if it is OK, I do it and then tell them.

Have there been any negative aspects?

I am only seeing very positive things. And bear in mind she has a lot going

on. I forgot to mention she is also sleeping better. Over the last week she has

increased to 6 hours STRAIGHT. She never did that.

Have you ever

lowered the dosage, and if so was there a regression?

No, but I may cut back to 2 a day. The reason I started on a higher dose is

`s wiring is wrong, she is missing her corpus callosum. We have tried

every seizure med, every sedating med you name it we tried it. She doesn't

respond the way a typical child would.

I find this very interesting that now you have another population represented

here that the EFA`s work on. I passed the info on to my group(ACCKIDS) and I

am interested to see where it goes.

I am also using L-Theanine (amino acid) which from what I read the FDA may

approve it for ADHD.

It promotes relaxation.

I am very excited about all of this in the span of a few days I am seeing

very good things, and so is the school.

Dana

`s mom 4-ACC, SOD, HYDRO(SHUNTED), CHIARI(DECOMPRESSED),

SBO,GTUBE,SEIZURES,CDLS..and a VERY smart cookie!!!

ALSO, ALI 6, MIKE 15,JOHN 17, AND AMANDA 18

WIFE TO KEVIN-who is battling cancer

[Guest guest]

In a message dated 11/15/2003 8:32:43 AM Eastern Standard Time,

kiddietalk@... writes:

Dakota was dubbed

the " miracle child " by anyone that reads his medical records

is his female counterpart!!! We were told on ultrasound to prepare for

a funeral. She has defied ALL the odds, and what`s better yet, not one Dr can

explain to me how she is so high functioning. She is 4 years 5 months and is

starting to read, she has INCREDIBLE memory, but yet cannot ride a bike, or

write her name.

I absolutely follow my gut and do not stop until the Drs. give me what I

want. Most of time I am dead on. I think the reason is, we as parents know more

about our child`s condition then the Drs. do. The brain is a highly complex

organ that continues to mystify me. How she does the things she does is beyond

me

and the med. profession. If you read her medical record you would say Oh

gees...then you see her and you are like HUH?. has had 2 very long

extensive

brain surgeries, and a host of other minor surgeries am continually amazed by

her.

So that`s basically her story.

Dana

`s mom 4-ACC, SOD, HYDRO(SHUNTED), CHIARI(DECOMPRESSED),

SBO,GTUBE,SEIZURES,CDLS..and a VERY smart cookie!!!

ALSO, ALI 6, MIKE 15,JOHN 17, AND AMANDA 18

WIFE TO KEVIN-who is battling cancer

[Guest guest]

Hi Dana!

I know exactly what you mean about the fear of the doctor's trusting

your instinct. It's like walking through a haunted house and having

to be first! " no you go first I don't want to go first! "

It's like " Hello? I have a child here that needs help! " and

hearing an echo. " help...help...help... " But then it's like a power

comes over you and the fear changes to " I'm not going to let him

slip through the cracks just because everyone else is ignorant -I'm

going to help him if I have to do it myself! " and so you do.

With Dakota our first son who was a traumatic delivery who had life

threatening birth injuries, and not a positive prognosis due to the

heavy head injuries (the torn neck muscles and crushed facial nerves

were the milder aspects!) the MDs and therapists all told us what

needed to be done, and they knew. Not only that, even outside of

the MDs and therapists -the schools and even insurance were aware.

I mean -even Dakota's every aspect of therapy and treatment was

covered by insurance. As severe as his condition was, I never felt

the need to search for information on how to help him outside of

what we were told. And we were told some cutting edge info too.

Dr. Trevor DeSouza was the one that taught us the importance of

brain stimulation for Dakota. Each neurologist or other specialist

we saw all were confident in how to best help Dakota, and we watched

Dakota progress even though it was a long road of therapy and

treatment that began at birth for him. Dakota was dubbed

the " miracle child " by anyone that reads his medical records. I was

told to be compulsive in his therapy -and that's just what I was -

and it worked. I am forever thankful to all his doctors and

therapists who helped us help him.

This is why I say his ADHD was never viewed as anything -I mean our

back then globally delayed Dakota who at times would just stop

breathing was at risk for death, high risk for SIDS (not DSI) risk

for MR, wheelchair due to uneven growth of limbs, etc.

Today Dakota is now a healthy happy forth grade student who

maintains As and Bs in an accelerated academics program. He is a

great soccer player -and very few can beat this child at chess.

Just don't forget to give him his fish oils like I did yesterday

after all I wrote here! (but did as soon as we got home!)

With Tanner -it was horrible to know we had to go outside the box -

for me staying in the box meant believing the SLP that first

diagnosed Tanner with apraxia who when I asked her " well, he'll

still talk, right " (just kidding I was) and she said after a long

pause " ....it depends " What do you mean it depends?!!! My first

thought was Helen Keller and if you can teach her to talk than why

not Tanner -OK well maybe that wasn't my first thought -but one that

did hit me pretty fast. (which is why I had Tanner schooled at a

school for the hearing impaired which is working out so well for so

many like Tanner) So yes -more than my husband who way back when at

that time still thought I was just being a bit of the paranoid mom

and that Tanner would " just start talking " I gave up sleep to read

websites on neurology -and every condition I could find that in any

way could possibly relate to what Tanner was going through to help

him. Crash course -didn't matter -if was all done in desperation.

Today I'm happy to say that not only is Tanner doing as well as it

says on his update page -the prognosis for apraxia for all children

is not only very high -but bright.

http://www.cherab.org/information/familiesrelate/letter.html

In addition, I actually do believe that due to the apraxia -my son

Tanner and many like him are actually at an advantage due to the new

pathways they found for speech. Incredible memory -sense of

direction. You can't teach most this stuff in school. From a young

age -you go to a mall or Disney and walk out and follow Tanner -he's

like a homing pigeon that knows just where the car is. If we go

anywhere once -he remembers it.

How do you think he get's straight A's -he remembers what he's

taught. Problem for him as always is that the motor planning can at

times get in his way.

So follow your gut Dana, and all of you parents out there. Here was

my inspiration to the power of parents -and this happened long

before I was a mom myself...but this powerful memory will stay with

me forever. From the archives:

~~~~~~~~~~~~~~~~~

I worked in animation for a studio once called Prism

in NYC. There is a couple that owned that studio and I'll never

forget one day the mom answering the phone and saying casually while

eating her bagel " oh he broke his arm again -OK well give him some

of his magic pills and have him lay down and I'll be home later " I

was shocked to say the least! After I questioned her it ends up

that the her son has osteogenesis imperfecta, a rare genetic defect

of bone collagen. This is what she told me that stayed with me

forever.

" When my son was born they told me to not touch him or hold him or

I'll break his bones -to just let him lay on a sheepskin blanket and

that most likely he would die young. This was my baby! -and they

couldn't tell me what I could or couldn't do! I knew as the mother

what my son needed! I picked him up and I treated him just like any

other baby. Yes he has broken probably every bone in his body at

this point more than once, but he's a normal kid and has lots of

friends and goes to school. I proved them all wrong! " She then

told me that twice they casted the break on the advice of the MDs -

and that was the worst mistake because by the time the cast was off

he broke other bones -and he lost use of that limb -so they no

longer listened to the MDs and stopped casting the breaks. For her

son -a broken bone is not unusual. Because of not casting however -

part of his body grew deformed and he needs to be in a wheelchair

now. The mom told me he wouldn't have a life if she listened to the

MDs and kept casting his every break however.

Physical or behavioral problems can be overcome, and you hear about

that happening time after time. Sometimes you need to look down a

road that others didn't -and just follow that mom or dad " gut

instinct " And yes -at times kids do " get it " but in some cases it

takes more -and longer -than others. It is fortionate when

they " get it " quick -and I know first hand it can be very rough for

all when it takes longer. Don't let anyone tell you however that

change is impossible. Time will prove them wrong in most cases.

=====

[Guest guest]

Faith is too. Althought Faith's problems aren't near as severe as Dakota or

's.

When she was born she has under developed lungs and went to the NICU. When

I was discharged she hadn't been improving, had gone into cardiac arrest

twice, was on a vent, and the doctors were telling me it was going to be a

long road to get her healthy enough to go home. She showed them. She was

off the vent the next day and 9 days after I got the speech I was picking

her up and was being told treat her like any other baby. After she was home

she wound up back on oxygen for a while. At 8 months old she couldnt even

sit if you propped her up. She was diagnosed with cerebral palsy and

hypotonia. Then she was referred to an orthopedist who found the bones in

her left leg from the knee down are twisting. I was told not to expect her

to walk until she was 2, if then.

Well she started walking right before he first birthday. Not well, but she

was doing it. Now she's 2 and runs everywhere. She still has problems with

her leg but she compensates for it quite well. Her doctor says there isnt'

anything they can really do until she stops growing and most kids outgrow it

anyway. She still has problems with her hands off and on too, good days and

bad ones. She has cognative delays (50%) and it's suspected she has sensory

integration disorder as well. But even with her cognative delay she knows

some of her colors, some shapes, and has a bigger understandable vocabulary

than Hope does.

Naturally she's a little mocking bird and will repeat everything you say.

But you can have a little conversation with her as well. This morning we

got dressed and I asked her if she was ready to eat. She said " eet " , I said

ok. She got in her chair and said " gwaps " and " gurcle " . Which is grapes and

" circle " , and that's what she called bagles.

It could be a lot worse. But in my family everyone has perfectly healthy

children. I had Hope with seizures, apraxia, and migraines. Then I had

Faith will all that going on. And I'm the one in the family in therapy for

bipolar disorder. This couldnt happen to someone in the family who is

stable? lol I've heard that God doesn't give you any more than you can

handle, but does he have to be so trusting?? :-)

Toni

[Guest guest]

Toni Wells wrote : " I've heard that God doesn't give you any more than you can

handle, but does he have to be so trusting?? :-) "

Toni.....he knew what he was doing, I have no doubt. You're one amazing girl,

and those babies are luck to have such a wonderful mom. I hope the good lord

continues to bless you all.

~K

[Guest guest]

Dana,

Yeah for ! I also have a miracle child 3 open heart surgeries 2 other

heart surgeries a lymphangoma removal (non-cancerous) a severe stroke global

insult to

the brain..................and Doc so the same read the chart/records and

reply " oh my " he knows his abc's? " ..................Yes Ma'am we know our

children the best!!

God Bless

-Michele

[Guest guest]

Yes. It is used frequently on the SID (sensory integration

dysfunction) boards and also autism boards. I've sent you some

private emails lately about the subject, and other related things--

so if you haven't checked your email, check it. You can reply to me

at either

merrywbee@...

or

maryandphilip@...

I also would like to suggest the following books to you:

The LCP Solution by B. Jaqueline Stordy

Children With Starving Brains by Jaquelyn McCandless, MD

W

> has anyone heard of using epson salt baths as a way of helping

their

> children with developmental issues?