Re: SOCIAL PROBLEMS..

[Guest guest]

Martha I agree 100% with every word you said. Everybody should

remember that behind each word here is a parent or family member who

loves a child, or a professional who cares for a child...and your

example of Deborah's is one I remember too and so precious.

I stay around because I care about the people and the children this

group represents. From the earliest days of Children's Apraxia

Network and then CHERAB there have always been a mix of children

represented, including of course those with autism. And actually I

believe we've come a long way as a group in learning from each other

and even outloud wondering now..is it really autism? is it really

apraxia? Or should we just say there's been a rise in multifacted

communication impairments no matter what you want to call it?

If we didn't disagree at times on this grouplist that would mean one

thing.... (this was a censored group and we'd only get one side)

Debating is a sign of intelligence...that's a good thing! It's

something our children need more to help bring them 'all' a voice.

=====

[Guest guest]

Thank you for this: " His SLP believes his receptive issues are due

to not being able to store language properly because he can't say it

properly - with Prompting in therapy he is now " hearing " the words

after getting help saying them. He might not be able to repeat them

on his own without the tactile cuing, but hearing himself say them

properly a few times with help seems to help him store and be able

to retrieve the language - not necessarily an apraxia thing, but

kinda related according to his SLP "

I've noticed with my son that his receptive language jumps when his

ability to expressively communicate (with signs, gestures, word

approximations) improves. I suspected there was a connection and

his PROMPT SLP agreed, but we didn't really have the reason why

figured out. It's important because the receptive language deficits

seem to imply cognitive problems, which isn't necessarily the case!

>

>

> >I've also heard of it happening - I'm sure some children do get an

> >incorrect ASD dx. But I don't personally know of any cases; they

are

> >all cases I've just read about online.

>

> Come to my neck of the woods. Three children evaluated by the

same

> University early childhood team in the same spring THAT I KNOW OF

(there

> may be more) were all mis-diagnosed. My son had verbal dyspraxia

and some

> oral apraxia and an undefined less severe mixed language

disorder. Another

> child had a severe phonological disorder, the third I don't know,

but he

> was in speech therapy. These are children my son's speech

therapist was

> working with two years later this spring. All were mis-diagnosed

between

> the ages of 2 and 3 and were clearly not autistic two years

later. My son

> was diagnosed with " moderate autism " and they were talking about

eventual

> mainstreaming by high school!!! When I questioned the diagnosis I

was

> accused of being in denial...I was not and am not a parent in

denial!

>

> Even the most reputable clinic in the state acknowledged to me

that autism

> is often misdiagnosed by the early childhood team that evaluated

my

> son. They did first ask who the pediatrician on the team was,

because one

> pediatrician in particular makes diagnoses that stick. The dr. on

my son's

> team was NOT this accurate doctor.

>

> >Most, if not all,

> >parents go through a grieving period when they learn their child

has

> >autism. Part of the grieving process is denial, and denying that

the

> >diagnosis is accurate is fairly common.

>

> Yes, it is, but sometimes it is also a matter of a parent knowing

something

> doesn't sound accurate. Apraxia is almost an unknown around here,

even

> with therapists. SLPs have heard about it in textbooks, but

wouldn't

> recognize it if it bit them! Autism on the other hand is a " hot "

diagnosis

> and buzz word around here. It gets you services. I actually have

had

> people tell me I should be grateful he got diagnosed because he

got more

> therapies. Grateful? For what? For no improvement and even some

harm

> from some of those therapies? Grateful that two years were wasted

while he

> made no improvement? No thanks! If I could rewind I'd trade back

the

> autism diagnosis in a flash!

>

> Between the age of 23 mo and 2.5 yrs my son made NO progress in

speech

> therapy through early intervention. I, the mother who was clearly

in

> denial according to these professionals, was the one who asked for

another

> evaluation because I didn't think it was right for 6 mo to go by

with no

> progress. That is when he was diagnosed with autism. Over the

NEXT 18

> months despite increasing his therapies to 5 hours per week and

gearing

> them toward treating autism he STILL made no speech and language

gains. It

> wasn't until I STOPPED all autism therapies, finally got an

apraxia

> diagnosis and started Prompt therapy that he has finally made

progress. In

> his first 5 months of therapies targetting apraxia he gained 6

months of

> language. This was after TWO YEARS of NO progress! He went from

being a

> little delayed in speech and expressive language and age

appropriate in

> receptive to being severely delayed in both! At his last testing

in

> January he is still >3 SD below age appropriate in speech

production and

> around 3 SD below in language, but he had gains for the first time

since he

> was first tested. He is now classified as having a severe speech

> production disorder and a moderate to severe language disorder

(with

> receptive being moderate, expressive severe.) He is improving

slowly with

> his greatest gains in receptive language, not speech, but he's

making

> steady progress after losing ground for so long. (His SLP

believes his

> receptive issues are due to not being able to store language

properly

> because he can't say it properly - with Prompting in therapy he is

now

> " hearing " the words after getting help saying them. He might not

be able

> to repeat them on his own without the tactile cuing, but hearing

himself

> say them properly a few times with help seems to help him store

and be able

> to retrieve the language - not necessarily an apraxia thing, but

kinda

> related according to his SLP...but that is a whole other topic!!!)

>

> I truly think it is a regional thing. Had I lived in say, NJ, or

somewhere

> where apraxia is more common I imagine that he would have been

diagnosed at

> 2.5 yrs and we would have never had to deal with the autism

misdiagnosis

> nightmare. Instead all kinds of signs of apraxia were twisted

into being

> autism signs. Re-reading his thick report on the team's finding

is just

> depressing. They obviously knew nothing about apraxia or it would

have

> been obvious.

>

> I am bitter and probably sound unfriendly about this whole

> experience. Yes, my son's is just another story on the internet,

but

> behind those internet stories are true people who truly have been

through

> horrible times due to a misdiagnosis. I'm still all for early

> intervention. There is a child at my son's preschool who I met

last summer

> when they had 3 weeks of school together. She was diagnosed with

autism

> ACCURATELY within days of my son. This team did get it right

> sometimes. She and my son shared therapists without every

crossing paths

> until last summer. I didn't see her the entire preschool year

because she

> went on opposite days from my son. They are together in a class

again this

> summer. Her improvement over this last year is amazing! ABA and

the other

> therapies she receives are clearly the most appropriate for her.

My son

> had the exact same therapists and similar therapy approaches and

he did not

> have any improvement. To me that is proof enough. Treat him for

autism -

> nothing. Treat him for apraxia - progress.

>

> Miche

>

[Guest guest]

" Obviously, this is a hot topic. I regret ever commenting about it in

the first place. " No don't! We NEED to discuss this in my

opinion. I've been looking on a few late talking groups and it's

been a real eye opener regarding autism, PDD and late talking not

otherwise related to these disorders. From my own personal

experience I understand why it's so awful to have someone suggest

that your child has autism or PDD and to torture yourself wondering

what you feel in your gut. I read posts from moms who are so

certain their kids do not have these disorders that I'm jealous of

their confidence, but then they are so defensive about hearing of

anything that might be remotely connected to ASD/PDD that they flat

out reject therapies or even early intervention altogether that

might benefit their children! I've learned that I have to get a

thick skin. I can't put my emotions before helping my child. If a

therapist suggests my son has PDD, well she's just trying to help,

and if she's wrong and I've been put through needless worry, I will

just have to get over it! The important thing is to figure out how

to help my child, which might mean exploring all of the big scary

possibilities out there. Personally, I think it's stupid that

something like autism is a spectrum disorder. It's too imprecise

and it DOES leave lots of opportunity for misdiagnosis. It almost

seems like a lazy way to diagnose, and I think they need to nail

this down better. We don't take allergies, flu, colds and strep and

just chalk it all up to being on the " flu spectrum. " An autism dx

is devastating to hear and it seems absurd that some of these

kids " lose " their dx after a year or two! It seems to me it might

just be better not to label at all but to analyze the symptoms and

design therapies around them. Who cares what you call it--just help

my child!!

Okay, sorry for the rant, but this has been under my skin for a

while, and the nice thing about this group is I feel we can say

what's on our minds, so let's not stop that. And my last two cents:

I find the comments from parents of kids with ASD and non-apraxia

difficulties invaluable. I hope none of you leave!!

> RE: [ ] Re: SOCIAL PROBLEMS..

>

>

> This is my last statment on this topic.

>

> " But seriously, if this list decides to ban discussion of

autism... "

>

> Deborah brought this up, not me. I NEVER suggested banning

discussion

> of autism.

>

> " So I apologize for feeling you are fortunate! I don't

> think it's negative that your child's doctors wanted to make sure

that

> they understood all of your child's issues - otherwise the

treatment

> would be less than optimal. "

> Don't apologize. I DID feel fortunate and got derided for it. I

was

> glad that my daughter went through the evaluation - I never said

> anything to the contrary. Was it agonizing? Yes. But I am glad

that it

> was done.

>

> Obviously, this is a hot topic. I regret ever commenting about it

in

> the first place.

>

> ******************

> (Rochester, NY)

> Mom to , 3.1 years, Verbal Apraxia

> & , 11 months

[Guest guest]

ok, ok, i was going to stay out of this too, but... i can't. does it really

help anyone here that the people on this list can't even get along? we are

ALL faced with major problems and decisions to make. and also we are faced

with diagnosing or labeling or children. herein lies the problem. oh, don't

we wish we had " normal " lives. ones in which there is no behavior issues,

speech therapies, potty training issues, sensory and o/t issues, etc... when i

signed up as a parent, my children did not come with manuals and i certainly

didn't sign up for brain surgeries for my son. do you want to spend your time

arguing whether apraxia is part of the asd or not? the whole thing boils

down to many children show some signs of asd but not enough to put them on the

spectrum. until the doctors decide (they can't even decide) on what the

criterias of asd are(and they change) some of us will see our child on the

spectrum, some will be right on the fence (so to speak) and others will see the

child not on the spectrum. mix that all together with doctors trying to

medicate to mask or lessen symptoms (ocd), school officials and teachers trying

to

cut services due to budget and also trying to diagnose or classify the child

for special education, add in some frustrated parents who feel taken

advantage of and the parents have to blow off steam and here in the anonymous

world

of cyberspace, it's the easiest way to vent.

the best advice i can give is to stick to your ground. don't be in denial,

if it's autism, it doesn't change your child, he or she is still the same

lovable kid you've always known. it's just a label. if you don't want it and

you don't think it applies to your child, fight it. i myself am in conflict

with this whole asd diagnosis, but add in my problem, my son has hydrocephalus

(extra fluid on the brain), a shunt that goes from his brain to his heart to

get rid of the extra fluid and probably will need more surgeries in the

future, they had to drill 2 holes in his skull for the surgeries and now want

to diagnose him as high functioning autistic. i really don't feel he is

autistic, they operated on his brain 3 x. if they operated on his foot, i

would

be first in line to say yes he is asd. truth is the dev ped said he might

grow out of it, after he said he wanted to medicate him and looked at the

school

records and told me he gave me an independent evaluation, $500 down the

drain. he's not able to participate in the autistic research programs because

he

has hydrocephalus, he's too high functioning for the autistic classes at

school, reading and math are at 1st grade level, he's in kindergarten, so now

he's hyperlexic too? if his social skills were better, he would just be a

bright kid. so am i in denial? i don't think so, do i have to be in denial if i

don't think my son has autism? my son has a proven, operated on medical issue

and some neurological signs of asd. i know i'm in the minority here, don't

know if i would feel different if he had no other medical issues. but at 6

years old he has been MISdiagnosed as right side dominate, apraxic, possible

MR,

possible PDD, possible aphasia and have ruled out genetic issues, had

mri's, cat scans, eegs. this kid has been through the ringer. now he has

developed a post traumatic stress disorder from his hospital stay which he is

slowly emerging from so i'm not really open to try a new diagnosis and have

that

be a misdiagnosis too. either the child is on the spectrum and the parents

will usually be the first to say, you know you're right or children are

presumed to have a certain diagnosis until they show that it does not apply.

guilty of a neurological impairment until your child proves HIMSELF/ HERSELF

innocent. strange, huh?

anyhow, what i mean to say is all of us have our problems and issues to deal

with. volunteer at your local hospital and take a walk through the

pediatric intensive care and look around. i spent all last June in the ICU and

when

you see 4 year olds walking around with no hair and pushing their own iv, your

heart goes out to them, and look at all the parents who have lost their

child. put things into perspective. thank God for your child, hug them, kiss

them on the head and try to help them the best way you know you can. they are

all struggling, help them to achieve goals and most of all show them love.

don't just love them, say it and mean it and show them how important they are

in your life. don't underestimate what your child knows or hears, they know a

lot more than you give them credit for sometimes.

let's put this to rest, sorry so long,

and how about any idea with " th and thr " clusters, " L " sound, and final " n "

sound.

lori

[Guest guest]

I wasn't being disdainful or sarcastic or anything of the sort.I am

sorry you interpreted it that way.

I was genuinely asking if it would be easier for apraxic parents to

use this group exclusively and perhaps have a seperate group that

covers both apraxia and autism.

I am not disdainful of anyone on this group or any of these issues.

i was genuinely admiring that you expressed yourself so well.

I absoloutely understand how difficult the spectre of autism is. For

what it is worth it is also very hard to have your childs diagnosis

discussed as the worst of all possible outcomes - but i absoloutely

understand why parents feel that way.

I was asking the question genuinely - is this all too difficult to

discuss jointly sometimes. Perhaps the way you responded to the

question shows how difficult it is for us all.

I'm sorry that you saw that as a ridiculous question. Sorry too that

you seen to have interpreted it as some kind of an attack which it

was not - at all.

I actually think that raising the question has allowed us to consider

the way we discuss crossover subjects and I cannot therefore regret

asking it. But the negativity you read in to it was your

interpretation of what I said and not the intent.

Regards

Deborah

> >

> > I have always heard wonderful things about ABA. I would be the

> first to

> > start my daughter on an ABA program if she was on the spectrum. I

> have

> > never heard of ABA being used to treat " just " apraxia, though.

> That is

> > very interesting - Is that a real-life application for treating

> > apraxia?

> >

> > " There is just general resistance to talking about anything that

in

> any

> > way relates to autism here. "

> > Can you really blame parents of apraxic, non-ASD kids being

skittish

> > about discussing autism? So many of us have been through the

> wringer

> > with fears and suspicions of autism. I can honestly say that,

once

> our

> > family got past the neurodevelopmental evaluation *without* an ASD

> > diagnosis, I never wanted to look back. Now that some time has

> > passed, I can discuss it, but I cannot blame others for being

> hesitant.

> >

> > Warm regards,

> > ******************

> > (Rochester, NY)

> > Mom to , 3.1 years, Verbal Apraxia

> > & , 11 months

> >

>

>

>

>

>

>

>

[Guest guest]

" let's put this to rest... "

Amen to that, Lori! Thank you.

________________________________

From:

[mailto: ] On Behalf Of boomr3@...

Sent: Thursday, June 29, 2006 10:48 AM

Subject: Re: [ ] Re: SOCIAL PROBLEMS..

ok, ok, i was going to stay out of this too, but... i can't. does it

really

help anyone here that the people on this list can't even get along? we

are

ALL faced with major problems and decisions to make. and also we are

faced

with diagnosing or labeling or children. herein lies the problem. oh,

don't

we wish we had " normal " lives. ones in which there is no behavior

issues,

speech therapies, potty training issues, sensory and o/t issues, etc...

when i

signed up as a parent, my children did not come with manuals and i

certainly

didn't sign up for brain surgeries for my son. do you want to spend your

time

arguing whether apraxia is part of the asd or not? the whole thing boils

down to many children show some signs of asd but not enough to put them

on the

spectrum. until the doctors decide (they can't even decide) on what the

criterias of asd are(and they change) some of us will see our child on

the

spectrum, some will be right on the fence (so to speak) and others will

see the

child not on the spectrum. mix that all together with doctors trying to

medicate to mask or lessen symptoms (ocd), school officials and teachers

trying to

cut services due to budget and also trying to diagnose or classify the

child

for special education, add in some frustrated parents who feel taken

advantage of and the parents have to blow off steam and here in the

anonymous world

of cyberspace, it's the easiest way to vent.

the best advice i can give is to stick to your ground. don't be in

denial,

if it's autism, it doesn't change your child, he or she is still the

same

lovable kid you've always known. it's just a label. if you don't want it

and

you don't think it applies to your child, fight it. i myself am in

conflict

with this whole asd diagnosis, but add in my problem, my son has

hydrocephalus

(extra fluid on the brain), a shunt that goes from his brain to his

heart to

get rid of the extra fluid and probably will need more surgeries in the

future, they had to drill 2 holes in his skull for the surgeries and now

want

to diagnose him as high functioning autistic. i really don't feel he is

autistic, they operated on his brain 3 x. if they operated on his foot,

i would

be first in line to say yes he is asd. truth is the dev ped said he

might

grow out of it, after he said he wanted to medicate him and looked at

the school

records and told me he gave me an independent evaluation, $500 down the

drain. he's not able to participate in the autistic research programs

because he

has hydrocephalus, he's too high functioning for the autistic classes at

school, reading and math are at 1st grade level, he's in kindergarten,

so now

he's hyperlexic too? if his social skills were better, he would just be

a

bright kid. so am i in denial? i don't think so, do i have to be in

denial if i

don't think my son has autism? my son has a proven, operated on medical

issue

and some neurological signs of asd. i know i'm in the minority here,

don't

know if i would feel different if he had no other medical issues. but at

6

years old he has been MISdiagnosed as right side dominate, apraxic,

possible MR,

possible PDD, possible aphasia and have ruled out genetic issues, had

mri's, cat scans, eegs. this kid has been through the ringer. now he has

developed a post traumatic stress disorder from his hospital stay which

he is

slowly emerging from so i'm not really open to try a new diagnosis and

have that

be a misdiagnosis too. either the child is on the spectrum and the

parents

will usually be the first to say, you know you're right or children are

presumed to have a certain diagnosis until they show that it does not

apply.

guilty of a neurological impairment until your child proves HIMSELF/

HERSELF

innocent. strange, huh?

anyhow, what i mean to say is all of us have our problems and issues to

deal

with. volunteer at your local hospital and take a walk through the

pediatric intensive care and look around. i spent all last June in the

ICU and when

you see 4 year olds walking around with no hair and pushing their own

iv, your

heart goes out to them, and look at all the parents who have lost their

child. put things into perspective. thank God for your child, hug them,

kiss

them on the head and try to help them the best way you know you can.

they are

all struggling, help them to achieve goals and most of all show them

love.

don't just love them, say it and mean it and show them how important

they are

in your life. don't underestimate what your child knows or hears, they

know a

lot more than you give them credit for sometimes.

let's put this to rest, sorry so long,

and how about any idea with " th and thr " clusters, " L " sound, and final

" n "

sound.

lori

[Guest guest]

hi lori -you are right- there are a lot of issues and one of my best

friends has a daughter with cerebral palsy- we are lucky- there are a lot of

worse

things than apraxia or asd- sounds like you and your child have been through

the mill- so sorry you have had to go through so much- time will tell they

say but it sounds like you are both on the right track now- our problems are

minor compared to others- charlotte

[Guest guest]

I am surprised to hear some of you saying that your neuro docs are not

knowledgeable about apraxia, and thus give an autism dx

inappropriately to children with apraxia. How can such a professional

NOT know about apraxia? Particularly since so many kids with autism

also have apraxia. The reason our lead ABA therapist knows so much

about apraxia is because so many of her clients with autism also have

apraxia. I would expect this sort of mistake from school districts or

pediatricians who are really not qualified to diagnose ASD or apraxia,

but not neuro docs.

>

> hi miche- ive heard the same thing as you - since autism is so well

known

> and apraxia is almost unheard of and i think the autism diagnosis is

sort of a

> catch all for anyone on the spectrum it fits in better with the

education at

> school- my son has apraxia and for those that think we should all be

lucky and

> grateful i would just like to say that we have to explain to people

all the

> time because they have never heard of it and i have also had

professionals

> tell me there has to be brain damage involved like a stroke- or

that if my son

> follows a command no matter how long it takes maybe i am wrong- one

of the

> teachers at school was told by the principal that one of the

problems they have

> is that there are a lot more children with special needs that do

not have

> asd and their parents are requiring special educational programs

that make it

> difficult for the educational system- am i surprised? NOT ONE BIT-

I suspected

> that all along. My son also has a lot of social and behavioral

issues and i

> have gone to his school and observed this class full of kids (MOST

OF THEM ON

> THE SPECTRUM) and have to confess that most of them were better

behaved than

> my own son. I do not mean to imply that apraxic kids have more

behavior

> problems , I just want to say everyone is different. It was the

schools slp that

> suggested i contact the apraxia. kids group. Reading the Late

Talker , 6

> books about autism and being in this group has taught me how to

deal with the

> speech problems and although aba isnt recommended for an apraxic

child I have

> used it successfully . Josh is 74% INTELLIGIBLE after 2+ years of

therapy-

> Charlotte Henry

>

>

>

[Guest guest]

I would agree that Neuro doctors in my area (northeast - massachusetts)

know more about autism than apraxia. I think there is not nearly

enough information out there about Apraxia.... Heck my spell checker

doesn't even recogonize it...

maryebe wrote:

>

> I am surprised to hear some of you saying that your neuro docs are not

> knowledgeable about apraxia, and thus give an autism dx

> inappropriately to children with apraxia. How can such a professional

> NOT know about apraxia? Particularly since so many kids with autism

> also have apraxia.

>

[Guest guest]

Apraxia is not very common here. Many doctors and therapists just have not

seen it clinically! My son's neuro and EI SLP both KNEW about it, but

didn't " catch " it in my son. His neuro did mention it - said it could be,

but also said it would be treated the same, with speech therapy so at that

time it was not necessary to subject him to more evaluations. She also

refused to diagnose him as autistic. She said a child presenting like mine

you think three things, 1. MR - he clearly isn't. 2. Apraxia - he could

be, and 3. Autism - would require more testing and she wasn't leaning that

way. The team that diagnosed my son as autistic had a pediatrician, OT,

SLP and cognitive specialist (psychologist I believe.) My son was

diagnosed as apraxic by his regular physician with consultation with an SLP

who is an expert in apraxia. That's the best diagnosis we'll be able to

get without travelling out of state.

Miche

At 01:18 PM 6/29/2006, you wrote:

>I am surprised to hear some of you saying that your neuro docs are not

>knowledgeable about apraxia, and thus give an autism dx

>inappropriately to children with apraxia. How can such a professional

>NOT know about apraxia? Particularly since so many kids with autism

>also have apraxia. The reason our lead ABA therapist knows so much

>about apraxia is because so many of her clients with autism also have

>apraxia. I would expect this sort of mistake from school districts or

>pediatricians who are really not qualified to diagnose ASD or apraxia,

>but not neuro docs.

>

>

[Guest guest]

Hi Tommie!

It is very confusing at first -I know I too looked at all fish oil

the same way back when just a few years ago.

Look at the amount of DHA, EPA (both Omega 3 from fish) and the

amount of GLA (Omega 6 from primrose or borage seed oil) in all the

products put together. The Coromega is a great pure Omega 3 product

that is higher in the EPA then the DHA which appears to work best

for the majority of this group -but if you want to use it and want

it to work better, then you need to add just a bit of Omega 6 to

that (the GLA) I'm not sure of the quality of the other product you

are using -but based on what I found on this Walgreen's website

http://www.walgreens.com/store/product.jsp?CATID=100178 & navAction=jump & navCount=\

1 & id=prod849539 it's too high

in the GLA -you probably only need about 50 mg of the GLA

(flax is healthy but not needed to see the surges)

So again -

just buy a bit of either primrose or borage seed oil -and mix a few

drops in to the Coromega and then tell us what you see!

Below is an archive on more.

The following is an old EFA archive from this group which has worked

in this group for years so it's up on the Speechville message

board.

Recently there are a few members who are staying with the same

formula -but raising the dosage to multi dosing two to three times a

day and anecdotally they are observing even more dramatic and

accelerated surges. Due to recent messages I want to clarify that

the following was for the average new member who in the majority

will have a child that is 2 to 4 years old. If your child is around

5 or older you will probably want to start at one a day just for a

week or so and then increase right away to two. Not that you won't

see any changes on the lower dosage but for older children the one a

day (which is comparable to the dosage in infant formula) may not be

enough. Also most see the first plateau somewhere between 3-6

months and the second somewhere between 6 months to a year following

the lower dosage way. We don't know yet as a group if and when

plateaus are reached with higher dosage supplementation. If however

you hit a plateau at any point -you probably want to look to

increase dosage -especially if you are at one a day with a 4 year

old say.

You can run by your child's MD -start with the basic and observe and

go from there. With fish oils typically the changes are within one

day to three weeks almost across the board -so you'll know pretty

soon whether it's " working " ! Let us know the good news!

From

http://www.speech-express.com/boards/viewtopic.php?t=620

What fish oil should I give to my baby?

What fish oil should I give to my child?

The confusion is more the brand names than the formulas. In

actuality there really is no such thing as a " children's EFA "

perfect for all children yet. However fish oils can be marketed to

children by making fun flavorings and smaller capsules. Most of

the parents I know squeeze the oil out of the capsule anyway -so

that's besides the point for most of our group.

EFAs are now in baby formula and food, and EFAs come and are used in

a variety of formulas for children for various reasons. Mainly we

hear about the use of them for healthy brain development in regards

to children -but they are even proven to help prevent asthma

http://www.theage.com.au/articles/2004/02/20/1077072840758.html

And they may be coming to a school lunch near you -if you live in an

area of savvy parents

http://www.valleystar.com/localnews_more.php?id=51945_0_19_0_C

Regarding your specific question: (and to answer your question

Chris)

ProEFA is an Omega 3 (DHA and higher EPA) formula with a small

amount of Omega 6 (GLA) The Omega 3 in the ProEFA is from fish oil -

not from the liver of the fish -so no vitamin A. Only fish oil made

from the

liver of the fish contain vitamin A.

Children's DHA is cod liver oil which since it's from the liver of

the cod fish, it naturally contains Vitamin A. Cod liver oil only

contains Omega 3 (DHA and EPA) about that point:

" Most of our experience is with one, 1.0 gram capsule of ProEFA

(Complete Omega) that contains 144 mg EPA, 99 mg DHA and 40 mg of

GLA. We know that this combination appeared to work well. There

were some other supplements used but we could not conclude anything

about them. I can only say that both EPA and DHA are important and

GLA appears to have an additional positive effect on speech.

ALA, linoleic and oleic acids in " The Total Omega " contribute very

little to the EPA, DHA, and GLA effect.

I see at least 2 possibilities that you could use if you decide to

make the transition from short-chain omega-3s in plants (flax seed

oil containing alpha-linolenic acid or ALA, C18:2n-3) to the long-

chain mixture of EPA (C20:5n-3) and DHA (C22:6n-3). These are DHA

Jr. (30 mg DHA and 20 mg EPA in a serving unit) and Coromega (350 mg

EPA and 230 mg DHA). Both of these have been anecdotally successful

in the past.

Coromega can be divided in two and taken one half in the morning the

other in the evening. If you choose this mode you will provide your

son with the equivalent EPA+DHA of 2 ProEFA capsules per day without

the GLA.

Flax seed oil or freshly ground flax seeds are an excellent source

of the essential omega-3 alpha-linolenic acid (ALA or LNA) which is

the quintessential parent member of the omega-3 family of essential

fatty acids (EFAs). The body transforms it into EPA and the EPA

into DHA. This transformation is very inefficient (the yield is

about 10%) and is further inhibited by over consumption of omega-6

fatty acids from most vegetable oils or certain disease states.

Therefore, it is advisable to independently consume also ready made

EPA and DHA from good quality fish of from high quality fish oil

supplements. Some recommended intakes are listed on the

Introductory lecture on EFAs that I gave at the First Conference on

Therapy of Verbal Apraxia, July 23-24, 2001, town, NJ. (

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

The CHERAB Foundation's positive research results on potential

improvement in speech following EFA supplementation are based

on the use of ProEFA (Complete Omega) and that contains also

another essential fatty acid, GLA which is an omega-6 fatty acid.

The latter appears to be beneficial to children with apraxia. It is

not present in flax seed/flaxseed oil.

None of these materials present with any known side effects or

known toxicity in an otherwise healthy person. Nevertheless, we

advise every user of supplements to use them under medical

supervision. We don't know your child and we cannot provide you

with medical advice.

Sincerely,

Katz, Ph.D. "

About mercury and fish oil (vs. eating fish)

" Fish oils have been tested for various heavy metals like mercury

and there has been enough preliminary proof through studies, as well

as theory from reputable sources, that as I've posted many times

I've heard that the oils from fish may be the safest way to get the

benefits of the EFAs without the toxins due to the fact that mercury

etc. binds to the proteins/muscles of the fish.

" Measurement of mercury levels in concentrated over-the-counter fish

oil preparations: is fish oil healthier than fish? "

" CONCLUSIONS: Fish are rich in omega-3 fatty acids, and their

consumption is recommended to decrease the risk of coronary artery

disease. However, fish such as swordfish and shark are also a source

of exposure to the heavy metal toxin, mercury. The fish oil brands

examined in this manuscript have negligible amounts of mercury and

may provide a safer alternative to fish consumption. "

Division of Laboratory Medicine, Department of Pathology,

Massachusetts General Hospital and Harvard Medical School, Boston,

Mass 02114, USA.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=PubMed & list_uids=1\

4632570 & dopt=Abstract

And one other thing to keep in mind for those like me who do eat

both fish and take fish oil, there are toxins in the fish you eat

that won't be in the oil For example while mercury etc. binds to

the protein (muscle of the fish) so it's not in the oil of the

fish. From what I've read -the largest problem with fish oil itself

is rancidity. Oxygen and fish oil doesn't mix well.

Consumer Reports had this to say (most likely because toxins in

many cases bind to the protein and most oils are not tested for

rancidity)

" Consumer Reports tested 16 top-selling fish-oil pills which, like

other supplements, aren't closely regulated by the FDA.

Consumer Reports' Metcalf says the test results are

reassuring, " We found that all 16 brands that we tested had the

amount of Omega-3s that they said they did, which is good news. And,

we don't always find that with supplements. "

Since fish can contain toxins, Metcalf says Consumer Reports also

checked the supplements for purity, " We tested for three kinds of

toxins that often appear in fish - mercury, dioxin, and PCBs. "

Testers didn't find significant levels of toxins in any of the pills

tested, so you don't have to worry about contaminants. "

http://abclocal.go.com/kfsn/features/consumerwatch/consumer_070303_om

ega3.html

" The omega-3 fatty acids offer some unique benefits, should they

prove to be truly effective mood stabilizers. The advantages of the

omega-3 fatty acids as mood stabilizers include the apparent acute

efficacy in both the manic and depressive phases of bipolar

disorder, their lack of toxicity, as well as high patient

acceptance. In addition, omega-3 fatty acids confer some health

benefits during chronic use, such as possible reduction in the risk

of a fatal myocardial infarction. In addition, the omega-3 fatty

acids have no documented adverse drug interactions, and appear to be

safe (and possibly beneficial) in pregnancy and in children. "

http://ods.od.nih.gov/news/conferences/w6w3_abstracts.html

" I had the wonderful opportunity to hear ph Hibbeln, M.D.,

Chief,

Outpatient Clinic National Institute of Alcoholism and Alcohol

Abuse, NIH, Bethesda, land at the First Apraxia Conference

http://www.cherab.org/news/scientific.htm lecture about the

importance of PUFA -especially during pregnancy when you are growing

a brain inside you. If you don't consume enough PUFAs while

pregnant -the babies body will pull it from the mother's body. It's

his theory and research as to why so many mom's experience post

partum depression. http://www.beachpsych.com/pages/cc46.html In

additionit is proven that the PUFAs are important for cognitive

ability.

http://neuroscience.nih.gov/Lab.asp?Org_ID=352

Here is a quote from the US Department of Agriculture,

Environmental Chemistry Laboratory, Agricultural Research Service,

20705, Beltsville, MD, USA

Brain-specific lipids from marine, lacustrine, or terrestrial food

resources: potential impact on early African Homo sapiens. The

polyunsaturated fatty acid (PUFA) composition of the mammalian

central nervous system is almost wholly composed of two long-chain

polyunsaturated fatty acids (LC-PUFA), docosahexaenoic acid (DHA)

and arachidonic acid (AA). PUFA are dietarily essential, thus normal

infant/neonatal brain, intellectual growth and development cannot be

accomplished if they are deficient during pregnancy and lactation.

Uniquely in the human species, the fetal brain consumes 70% of the

energy delivered to it by mother. DHA and AA are needed to construct

placental and fetal tissues for cell membrane growth, structure and

function. Contemporary evidence shows that the maternal circulation

is depleted of AA and DHA during fetal growth. Sustaining normal

adult human brain function also requires LC-PUFA.Homo sapiens is

unlikely to have evolved a large, complex, metabolically expensive

brain in an environment which did not provide abundant dietary LC-

PUFA.

http://www.unl.ac.uk/ibchn/e_Link/cbpbbmb2002.htm

" The omega-3 fatty acids offer some unique benefits, should they

prove to be truly effective mood stabilizers. The advantages of the

omega-3 fatty acids as mood stabilizers include the apparent acute

efficacy in both the manic and depressive phases of bipolar

disorder, their lack of toxicity, as well as high patient

acceptance. In addition, omega-3 fatty acids confer some health

benefits during chronic use, such as possible reduction in the risk

of a fatal myocardial infarction. In addition, the omega-3 fatty

acids have no documented adverse drug interactions, and appear to be

safe (and possibly beneficial) in pregnancy and in children. "

http://ods.od.nih.gov/news/conferences/w6w3_abstracts.html

Here is an archive answer to answer more on EFAs:

" 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?

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.

Most found raising the EPA vs. the DHA or GLA to be best -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.

There is much more in the archives both here -as well as more

information at

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

http://www.speechville.com

Since I receive lots of calls about this -I wanted to list the most

common changes in an apraxic or other speech disordered child on

EFAs from what I've read and heard and seen.

1. Increase in babbling or attempts at sounds.

2. Increase in imitation.

Changes also can be looked for in (what you see as positive or

negative)

sleep

attention

appetite

focus

behavior

stools

Next will come a breakthrough of something you were probably working

on for a bit -so you will be excited but will think " Well -I don't

want to get my hopes up we were working on that for awhile now -

maybe it's just a coincidence " However after the second or third

surge in a short period of time -and then another - you are pretty

sure things are different and it's at this point the professionals

and the rest of the family and your friends are noticing it too -

maybe about two to three weeks now.

OK -the next stage is pure elation and hope -you see the light and

no longer feel as desperate and want to share this new information

with everyone and anyone. As the months go by and your child

continues to progress at a much more rapid rate -you may even start

to doubt the original diagnosis -especially if you started EFA

supplementation at two -and perhaps the SLP that diagnosed the

apraxia who also was at first excited is starting to second guess if

the original diagnosis was correct as well.

Unless you have to stop the ProEFA (or other Essential Fatty Acids)

and literally have the chance to see the regression of acquired

speech and language skills, attempts, and changes in behavior like

we did with Tanner (and/or have a chance to again witness the second

surge when your child is put back on the EFAs) -that doubt will

probably remain somewhere in your mind and in others around your

child. So the " I told you that he would start talking when he was

ready " comments should be expected of course.

Up to this point is understandable to me -it's the point after this

that is confusing to me, and perhaps not the best stage for our

children and for raising awareness or having research done to find

out what is happening to our children and why. Perhaps because we

have truly hit a paradigm shift...

As Dr. Agin states the EFAs actually appear to be in some

ways " curing " the apraxic child -even those diagnosed with severe

oral and verbal apraxia, hypotonia, sensory and behavioral issues.

Especially those started at younger ages.

The child on ProEFA or some other EFA formula's like it no longer

fits the criteria of the classic definition of apraxia -and yet

doesn't fit the classic perception of what a late talker is

either...

Some of the parents become more focused on other everyday activities

with their child and start to drift away from the support sources.

Problem with this attitude is that unless your child is really up to

speed on all aspects of speech and language, the support sources

that helped in the beginning will still benefit your child today.

ProEFA alone is not the only answer and until we know how and why it

works (or why in a handful of children it doesn't) we can't improve

on it "

Know there is lots of information here -but if you have to learn

just one thing from all of this it's right up on top -there is

always hope!

From: " kiddietalk " <kiddietalk@...>

Date: Mon Feb 14, 2005 12:59 pm

Subject: Re: Question about Fish oils

Hi Sara -use the liquid if you have it. Also the shelf life isn't

long so use it quick anyway (if your child doesn't mind the taste of

it-mine does) Some here may like the liquid -but the capsules are

better in my opinion for various reasons.

from a recent post:

And if taste is an issue -you may want to try capsule. My son and

others here do taste the difference between capsule and liquid.

Could have to do with exposure to oxygen?

" Liquid vs. capsule? Hands down my vote is capsule because it lasts

way longer, easy to control dosage, easy to travel with, not a big

deal if you spill the bottle over. Passed Tanner taste test (liquid

didn't)

And..yes...you can just use a pin and " poof " like magic the capsule

is 'oil' but the oil without a capsule -can't turn it into a capsule.

resources for EFAs

'Hi !

That is great news about the surges you are seeing so far in your

child within the typical one to three week period. Because you are

new to the group, and there are many other new people here too -I

wanted to once again share a view on the 'new' ProEFA liquid you may

not have thought of from a cut from an archived post which cleared

up a confusing thread of posts about accurate supplementation of

EFAs using liquid vs capsules:

" Due to the confusion of what dosage of the oils since the

introduction of the ProEFA oil in the bottle about a month or so ago

(vs. the capsules which are what most of us have used for years up

to the bottle oil) below is a reply about dosage of straight oil

from developmental pediatrician Dr. Marilyn Agin

http://www.cherab.org/information/speechlanguage/advisoryagin.html

....Around just 1/4 a teaspoon of ProEFA oil will be around the same

as 'one' capsule of ProEFA since " 1/2 teaspoon of ProEFA oil is

close to the equivalent of about 2 capsules of ProEFA "

Sadly -it still does appear that unless NN offers a dropper that

clearly has lines that state " one capsule " " two capsules " or

something like that as a guide as I suggested -that with use of the

oils -those of you using the straight oil will no longer be able to

share with all of us accurately -or even know yourself - what dosage

you are giving your child you are finding to be " too high " " too

low " or " perfect! " You will only be able to estimate. The best we

can advise now with the oil is that " 1/2 teaspoon of ProEFA oil is

close to the equivalent of about 2 capsules of ProEFA "

As I always say -brand name does NOT matter -only

Formula

Dosage

Quality

However we can use brand names as an easy to understand guide.

In our group we have found ProEFA -Efalex and EyeQ to be the three

best Omega 3 -6 oils, with ProEFA being the best so far overall due

to " it works best at low dosage " . With ProEFA -here is the dosage

which we as a group have found to be effective over the past number

of years with hundreds and thousands of children, and that has been

posted over and over at the CHERAB list. If any of you can figure

out a great way to translate this to the use of straight oil without

the capsules as a guide -please let us all know. In the meantime -

will one of the pharmaceutical R & D people in this group design an

EFA patch already so we can just slap that on our children instead

of all of this?!!

To start:

DHA -around 100 mg

EPA -around 150 -250 mg

GLA -around 30-50 mg

The only dosage we as a group know to be effective is to start with

one capsule of ProEFA a day -then go to two capsules of ProEFA a day

when you see a plateau in about 6 months to a year -then instead of

going to three capsules of ProEFA a day when you see a plateau again

in a year or more -you stay with the two ProEFA capsules a day and

add one capsule of ProEPA.

Just a reminder that the ProEFA oil needs to be refrigerated once

opened. Also once opened it has a shelf life of 2 months. ProEFA

capsules have a shelf life of almost 4 years -do not have to be

refrigerated once opened -and can be carried in your pocket if you

want. You can do this with the oil but you will smell funny.

I chose the ProEFA capsules over the liquid. As always -they work

the best at the lowest dosage. "

EFA tips and sources

http://www.cherab.org/information/dietaryeffects/efatips.html

http://www.cherab.org/information/dietaryeffects/efabasics.html

=====