Re: Hi I am new to this list and need help with ProEFA dosing for my son????

[Guest guest]

Your chiro is on the right track. I suggest that you get the book by

Ken Bock, The New Childhood Epidemics - read it cover to cover. If

you are into reading, researching and learning new things, you can

recover these children. Mainstream/conventional - you have found is

not acknowledging these damaged kids. Clearly, their approach is

useless. I,as so many on this list been there/done that too. Many,

many Moms on this list are make great gains using diet, biomeds,

specialized therapy, chelation, etc. If I were you, put the kids to

bed and read the files. And then go backwards and read the

headlines - you will find topics that will start to make sense.

Welcome to the list. It will seem overwhelming at first, hang in

there soon enough it will all start to make sense.

Mother to a vaccine injured child, 5 years old and recovering.

>

> Just a little intro... I have 2 children, both boys. Collen is 10

and

> my textbook child. Ian, who will be 8 in March, is severely apraxic

> adn ADHD. I noticed at 18 months there were problems, especially

with

> speech and the fact that he didn't walk till 18 months either. As

> many others were the doctor said he would be ok that he had an

older

> sibling talking for him. I knew better so I called Early

Intervention

> and had an eval doen. Services (ST) were held at home till 3 then

he

> went to an IU preschool 4 days a week in teh am, where he got

sppech,

> OT and PT there. In the meantime I was also getting evals done at

> Dupont Hospital. Till he was 4 1/2 I was told he

was " developmentally

> delayed " then finally at annother Dupont visit the pediatric

> developmental doctor and the SLP introduced me to the big " A "

> apraxia!!! At this point we had done allergy tests, fragile X,

> chromosomal testing, random blood work, MRI, etc.....all normal.

His

> therapy regimen changed and I found another list serve online I

> joined and through that found a SLP int he area to take Ian to on

IU

> breaks and for supplemenatl therapy. Ian naturally had behavioral

> issues and anotehr downfall is his lack of confidence. I hear so

many

> success stories but it seems the kids were so much more motivated.

> Anyway along our journeyhe was dx with ADHD combined. We started

wrap

> around services and he has a TSS at school. He is a happy child!!!!

It

> breaks my heart we are still doing this. He has had improvements in

> his speech but his gains are slow. He is still considered severe at

> almost 8. He does attment with a MLU of about 4-5 words, but the

> clarity isn't there. He does well in single word uttereances, but

> when stringing together to form a sentence it all falls apart.

>

> His ADHD behaviors I feel have been impeding his success in school

> and in therapy. He has major struggles in Reading, writing and

math.

> This year I tried medication for him (although I swore I never

would)

> and it didn't work out. He can't take much b/c he can't swallow

pills

> and would never leave a patch on. We have tried Adderall XR,

Adderall

> Xr in a lower dose combined with Abilify, Vyvanase, adn the tried

> Adderall Xr again twice a day. Now he is on nothing!!!!! The

Adderall

> makes him drop weight like there is no tomorrow. He gets sickeven

> looking at food. The Abilify made him a zombie and teh vyvanase

just

> didn't work at all. I am not interested in putting him on meds

> andsupplementing with high caloric shakes snacks etc to keeo weight

> up. He loves food normally!! 3 days off the med he gain 3 pounds

> back...YA!!!

>

> So I am looking for suggestions. I have sme proEFA here. We used it

a

> long time ago. I never noticed a difference but I never knew how

tro

> dose him. He is mall at 48 punds. So how muchand how often do I

give

> that. Any other ideas to help calm him to focus and/or to help with

> speech improvement.

>

> I have been considering other options also. I recently heard of

> vision therapy. I have never even had a comprehensive eye exam done

> on him. (what an oversight...only school screenings) So I will at

> least have an exam done to see if all is ok there.

>

> Also I was third party referred to a chiropractor who specialized

in

> naturalistic ways. I spoke with him yesterday and he made sense but

> scared me. He would want todo a proking chelation on Ian, collect a

> 24 hour urine, do all sorts of blood work panels and a urine sample

> to send of for nuerotransmitter testing. Then he takes those

results

> and puts together aplan for your child based on what they have too

> much or too little of. Sounds alittle invasive to me. It sounded

> great when I talked to him but I think we all are looking for

> the " miracle " for our child and I don't want to cloud my decisions

> that way. So I need to get info and think on that one. Plus it will

> be VERY expensive.

>

> So I have babbled long enough. Please flood me with ideas and

> thoughts now.

>

> Thank yu

> Chrissy in PA

>

[Guest guest]

Hi Chrissy and welcome to the group:

/links

Above is the link to the link section for you also.

/message/69053

Here is an archived message from

[Guest guest]

My daughter was on proefa, upon the recomm of her speech therapist. One

cap 2x per day with its contents sqeezed directly in her mouth. She is

gradually overcoming her obstacles, but I could not attribute it with

any degree of certainty that it was what made her surpass her earlier

problems. We used it for about 2 years until she could safely swallow

pills , then we switched to another form of its main ingridients. We

still have gramatical errors, abnormal inflection and major expressive

language delays, but she likes the taste so we give the gummy form...

hope this gives a little insight on the use of proefa

>

> Just a little intro... I have 2 children, both boys. Collen is 10 and

> my textbook child. Ian, who will be 8 in March, is severely apraxic

> adn ADHD. I noticed at 18 months there were problems, especially with

> speech and the fact that he didn't walk till 18 months either. As

> many others were the doctor said he would be ok that he had an older

> sibling talking for him. I knew better so I called Early Intervention

> and had an eval doen. Services (ST) were held at home till 3 then he

> went to an IU preschool 4 days a week in teh am, where he got sppech,

> OT and PT there. In the meantime I was also getting evals done at

> Dupont Hospital. Till he was 4 1/2 I was told he was " developmentally

> delayed " then finally at annother Dupont visit the pediatric

> developmental doctor and the SLP introduced me to the big " A "

> apraxia!!! At this point we had done allergy tests, fragile X,

> chromosomal testing, random blood work, MRI, etc.....all normal. His

> therapy regimen changed and I found another list serve online I

> joined and through that found a SLP int he area to take Ian to on IU

> breaks and for supplemenatl therapy. Ian naturally had behavioral

> issues and anotehr downfall is his lack of confidence. I hear so many

> success stories but it seems the kids were so much more motivated.

> Anyway along our journeyhe was dx with ADHD combined. We started wrap

> around services and he has a TSS at school. He is a happy child!!!!It

> breaks my heart we are still doing this. He has had improvements in

> his speech but his gains are slow. He is still considered severe at

> almost 8. He does attment with a MLU of about 4-5 words, but the

> clarity isn't there. He does well in single word uttereances, but

> when stringing together to form a sentence it all falls apart.

>

> His ADHD behaviors I feel have been impeding his success in school

> and in therapy. He has major struggles in Reading, writing and math.

> This year I tried medication for him (although I swore I never would)

> and it didn't work out. He can't take much b/c he can't swallow pills

> and would never leave a patch on. We have tried Adderall XR, Adderall

> Xr in a lower dose combined with Abilify, Vyvanase, adn the tried

> Adderall Xr again twice a day. Now he is on nothing!!!!! The Adderall

> makes him drop weight like there is no tomorrow. He gets sickeven

> looking at food. The Abilify made him a zombie and teh vyvanase just

> didn't work at all. I am not interested in putting him on meds

> andsupplementing with high caloric shakes snacks etc to keeo weight

> up. He loves food normally!! 3 days off the med he gain 3 pounds

> back...YA!!!

>

> So I am looking for suggestions. I have sme proEFA here. We used it a

> long time ago. I never noticed a difference but I never knew how tro

> dose him. He is mall at 48 punds. So how muchand how often do I give

> that. Any other ideas to help calm him to focus and/or to help with

> speech improvement.

>

> I have been considering other options also. I recently heard of

> vision therapy. I have never even had a comprehensive eye exam done

> on him. (what an oversight...only school screenings) So I will at

> least have an exam done to see if all is ok there.

>

> Also I was third party referred to a chiropractor who specialized in

> naturalistic ways. I spoke with him yesterday and he made sense but

> scared me. He would want todo a proking chelation on Ian, collect a

> 24 hour urine, do all sorts of blood work panels and a urine sample

> to send of for nuerotransmitter testing. Then he takes those results

> and puts together aplan for your child based on what they have too

> much or too little of. Sounds alittle invasive to me. It sounded

> great when I talked to him but I think we all are looking for

> the " miracle " for our child and I don't want to cloud my decisions

> that way. So I need to get info and think on that one. Plus it will

> be VERY expensive.

>

> So I have babbled long enough. Please flood me with ideas and

> thoughts now.

>

> Thank yu

> Chrissy in PA

>

[Guest guest]

Like your line under your name. Isn't it the truth!

[ ] Re: Hi I am new to this list and need help

with ProEFA dosing for my son????

Your chiro is on the right track. I suggest that you get the book by

Ken Bock, The New Childhood Epidemics - read it cover to cover. If

you are into reading, researching and learning new things, you can

recover these children. Mainstream/conventional - you have found is

not acknowledging these damaged kids. Clearly, their approach is

useless. I,as so many on this list been there/done that too. Many,

many Moms on this list are make great gains using diet, biomeds,

specialized therapy, chelation, etc. If I were you, put the kids to

bed and read the files. And then go backwards and read the

headlines - you will find topics that will start to make sense.

Welcome to the list. It will seem overwhelming at first, hang in

there soon enough it will all start to make sense.

Mother to a vaccine injured child, 5 years old and recovering.

>

> Just a little intro... I have 2 children, both boys. Collen is 10

and

> my textbook child. Ian, who will be 8 in March, is severely apraxic

> adn ADHD. I noticed at 18 months there were problems, especially

with

> speech and the fact that he didn't walk till 18 months either. As

> many others were the doctor said he would be ok that he had an

older

> sibling talking for him. I knew better so I called Early

Intervention

> and had an eval doen. Services (ST) were held at home till 3 then

he

> went to an IU preschool 4 days a week in teh am, where he got

sppech,

> OT and PT there. In the meantime I was also getting evals done at

> Dupont Hospital. Till he was 4 1/2 I was told he

was " developmentally

> delayed " then finally at annother Dupont visit the pediatric

> developmental doctor and the SLP introduced me to the big " A "

> apraxia!!! At this point we had done allergy tests, fragile X,

> chromosomal testing, random blood work, MRI, etc.....all normal.

His

> therapy regimen changed and I found another list serve online I

> joined and through that found a SLP int he area to take Ian to on

IU

> breaks and for supplemenatl therapy. Ian naturally had behavioral

> issues and anotehr downfall is his lack of confidence. I hear so

many

> success stories but it seems the kids were so much more motivated.

> Anyway along our journeyhe was dx with ADHD combined. We started

wrap

> around services and he has a TSS at school. He is a happy child!!!!

It

> breaks my heart we are still doing this. He has had improvements in

> his speech but his gains are slow. He is still considered severe at

> almost 8. He does attment with a MLU of about 4-5 words, but the

> clarity isn't there. He does well in single word uttereances, but

> when stringing together to form a sentence it all falls apart.

>

> His ADHD behaviors I feel have been impeding his success in school

> and in therapy. He has major struggles in Reading, writing and

math.

> This year I tried medication for him (although I swore I never

would)

> and it didn't work out. He can't take much b/c he can't swallow

pills

> and would never leave a patch on. We have tried Adderall XR,

Adderall

> Xr in a lower dose combined with Abilify, Vyvanase, adn the tried

> Adderall Xr again twice a day. Now he is on nothing!!!!! The

Adderall

> makes him drop weight like there is no tomorrow. He gets sickeven

> looking at food. The Abilify made him a zombie and teh vyvanase

just

> didn't work at all. I am not interested in putting him on meds

> andsupplementing with high caloric shakes snacks etc to keeo weight

> up. He loves food normally!! 3 days off the med he gain 3 pounds

> back...YA!!!

>

> So I am looking for suggestions. I have sme proEFA here. We used it

a

> long time ago. I never noticed a difference but I never knew how

tro

> dose him. He is mall at 48 punds. So how muchand how often do I

give

> that. Any other ideas to help calm him to focus and/or to help with

> speech improvement.

>

> I have been considering other options also. I recently heard of

> vision therapy. I have never even had a comprehensive eye exam done

> on him. (what an oversight...only school screenings) So I will at

> least have an exam done to see if all is ok there.

>

> Also I was third party referred to a chiropractor who specialized

in

> naturalistic ways. I spoke with him yesterday and he made sense but

> scared me. He would want todo a proking chelation on Ian, collect a

> 24 hour urine, do all sorts of blood work panels and a urine sample

> to send of for nuerotransmitter testing. Then he takes those

results

> and puts together aplan for your child based on what they have too

> much or too little of. Sounds alittle invasive to me. It sounded

> great when I talked to him but I think we all are looking for

> the " miracle " for our child and I don't want to cloud my decisions

> that way. So I need to get info and think on that one. Plus it will

> be VERY expensive.

>

> So I have babbled long enough. Please flood me with ideas and

> thoughts now.

>

> Thank yu

> Chrissy in PA

>

[Guest guest]

Chrissy,

If you are near Dupont, filtering water is a consideration.

Best wishes!

Liz

> >

> > Just a little intro... I have 2 children, both boys. Collen is 10

> and

> > my textbook child. Ian, who will be 8 in March, is severely

apraxic

> > adn ADHD. I noticed at 18 months there were problems, especially

> with

> > speech and the fact that he didn't walk till 18 months either. As

> > many others were the doctor said he would be ok that he had an

> older

> > sibling talking for him. I knew better so I called Early

> Intervention

> > and had an eval doen. Services (ST) were held at home till 3 then

> he

> > went to an IU preschool 4 days a week in teh am, where he got

> sppech,

> > OT and PT there. In the meantime I was also getting evals done at

> > Dupont Hospital. Till he was 4 1/2 I was told he

> was " developmentally

> > delayed " then finally at annother Dupont visit the pediatric

> > developmental doctor and the SLP introduced me to the big " A "

> > apraxia!!! At this point we had done allergy tests, fragile X,

> > chromosomal testing, random blood work, MRI, etc.....all normal.

> His

> > therapy regimen changed and I found another list serve online I

> > joined and through that found a SLP int he area to take Ian to on

> IU

> > breaks and for supplemenatl therapy. Ian naturally had behavioral

> > issues and anotehr downfall is his lack of confidence. I hear so

> many

> > success stories but it seems the kids were so much more

motivated.

> > Anyway along our journeyhe was dx with ADHD combined. We started

> wrap

> > around services and he has a TSS at school. He is a happy

child!!!!

> It

> > breaks my heart we are still doing this. He has had improvements

in

> > his speech but his gains are slow. He is still considered severe

at

> > almost 8. He does attment with a MLU of about 4-5 words, but the

> > clarity isn't there. He does well in single word uttereances, but

> > when stringing together to form a sentence it all falls apart.

> >

> > His ADHD behaviors I feel have been impeding his success in

school

> > and in therapy. He has major struggles in Reading, writing and

> math.

> > This year I tried medication for him (although I swore I never

> would)

> > and it didn't work out. He can't take much b/c he can't swallow

> pills

> > and would never leave a patch on. We have tried Adderall XR,

> Adderall

> > Xr in a lower dose combined with Abilify, Vyvanase, adn the tried

> > Adderall Xr again twice a day. Now he is on nothing!!!!! The

> Adderall

> > makes him drop weight like there is no tomorrow. He gets sickeven

> > looking at food. The Abilify made him a zombie and teh vyvanase

> just

> > didn't work at all. I am not interested in putting him on meds

> > andsupplementing with high caloric shakes snacks etc to keeo

weight

> > up. He loves food normally!! 3 days off the med he gain 3 pounds

> > back...YA!!!

> >

> > So I am looking for suggestions. I have sme proEFA here. We used

it

> a

> > long time ago. I never noticed a difference but I never knew how

> tro

> > dose him. He is mall at 48 punds. So how muchand how often do I

> give

> > that. Any other ideas to help calm him to focus and/or to help

with

> > speech improvement.

> >

> > I have been considering other options also. I recently heard of

> > vision therapy. I have never even had a comprehensive eye exam

done

> > on him. (what an oversight...only school screenings) So I will at

> > least have an exam done to see if all is ok there.

> >

> > Also I was third party referred to a chiropractor who specialized

> in

> > naturalistic ways. I spoke with him yesterday and he made sense

but

> > scared me. He would want todo a proking chelation on Ian, collect

a

> > 24 hour urine, do all sorts of blood work panels and a urine

sample

> > to send of for nuerotransmitter testing. Then he takes those

> results

> > and puts together aplan for your child based on what they have

too

> > much or too little of. Sounds alittle invasive to me. It sounded

> > great when I talked to him but I think we all are looking for

> > the " miracle " for our child and I don't want to cloud my

decisions

> > that way. So I need to get info and think on that one. Plus it

will

> > be VERY expensive.

> >

> > So I have babbled long enough. Please flood me with ideas and

> > thoughts now.

> >

> > Thank yu

> > Chrissy in PA

> >

>

>

>

>

>

>

>

>

[Guest guest]

Some considerations for you since you are in Pa:

1) NACD.org. They are in West Chester PA. They do a tailored home

program for kids with all kinds of labels including the ones you

mention. I think for one kid it is somewhere in the neighborhood of

$200 with eval and monthly fee if you do a membership. Less if just

eval. You have to look at the fees. I was on this before but I think

the fees changed.

2) Dr. Verma, a gastroeneterologist at CHOP is a good person to go to

to rule in or out gut issues that could be part of the weight issue.

3) There are tests that are listed in the folders by Dr. that

may help you see what is going on medically.

4) Dr. in Lansdale does the DAN thing which it sounds like

that is what you are talking about with the chiro. takes

insurance and is the parent of an autistic child and will work with

you if you do not want to do invasive testing or things uncovered by

insurance. He may also be a good doc to head to to get tests to rule

things in or out to determine if a specialist like Dr. Verma is

warranted in the first place.

Best wishes!

Liz

> >

> > Just a little intro... I have 2 children, both boys. Collen is 10

> and

> > my textbook child. Ian, who will be 8 in March, is severely

apraxic

> > adn ADHD. I noticed at 18 months there were problems, especially

> with

> > speech and the fact that he didn't walk till 18 months either. As

> > many others were the doctor said he would be ok that he had an

> older

> > sibling talking for him. I knew better so I called Early

> Intervention

> > and had an eval doen. Services (ST) were held at home till 3 then

> he

> > went to an IU preschool 4 days a week in teh am, where he got

> sppech,

> > OT and PT there. In the meantime I was also getting evals done at

> > Dupont Hospital. Till he was 4 1/2 I was told he

> was " developmentally

> > delayed " then finally at annother Dupont visit the pediatric

> > developmental doctor and the SLP introduced me to the big " A "

> > apraxia!!! At this point we had done allergy tests, fragile X,

> > chromosomal testing, random blood work, MRI, etc.....all normal.

> His

> > therapy regimen changed and I found another list serve online I

> > joined and through that found a SLP int he area to take Ian to on

> IU

> > breaks and for supplemenatl therapy. Ian naturally had behavioral

> > issues and anotehr downfall is his lack of confidence. I hear so

> many

> > success stories but it seems the kids were so much more

motivated.

> > Anyway along our journeyhe was dx with ADHD combined. We started

> wrap

> > around services and he has a TSS at school. He is a happy

child!!!!

> It

> > breaks my heart we are still doing this. He has had improvements

in

> > his speech but his gains are slow. He is still considered severe

at

> > almost 8. He does attment with a MLU of about 4-5 words, but the

> > clarity isn't there. He does well in single word uttereances, but

> > when stringing together to form a sentence it all falls apart.

> >

> > His ADHD behaviors I feel have been impeding his success in

school

> > and in therapy. He has major struggles in Reading, writing and

> math.

> > This year I tried medication for him (although I swore I never

> would)

> > and it didn't work out. He can't take much b/c he can't swallow

> pills

> > and would never leave a patch on. We have tried Adderall XR,

> Adderall

> > Xr in a lower dose combined with Abilify, Vyvanase, adn the tried

> > Adderall Xr again twice a day. Now he is on nothing!!!!! The

> Adderall

> > makes him drop weight like there is no tomorrow. He gets sickeven

> > looking at food. The Abilify made him a zombie and teh vyvanase

> just

> > didn't work at all. I am not interested in putting him on meds

> > andsupplementing with high caloric shakes snacks etc to keeo

weight

> > up. He loves food normally!! 3 days off the med he gain 3 pounds

> > back...YA!!!

> >

> > So I am looking for suggestions. I have sme proEFA here. We used

it

> a

> > long time ago. I never noticed a difference but I never knew how

> tro

> > dose him. He is mall at 48 punds. So how muchand how often do I

> give

> > that. Any other ideas to help calm him to focus and/or to help

with

> > speech improvement.

> >

> > I have been considering other options also. I recently heard of

> > vision therapy. I have never even had a comprehensive eye exam

done

> > on him. (what an oversight...only school screenings) So I will at

> > least have an exam done to see if all is ok there.

> >

> > Also I was third party referred to a chiropractor who specialized

> in

> > naturalistic ways. I spoke with him yesterday and he made sense

but

> > scared me. He would want todo a proking chelation on Ian, collect

a

> > 24 hour urine, do all sorts of blood work panels and a urine

sample

> > to send of for nuerotransmitter testing. Then he takes those

> results

> > and puts together aplan for your child based on what they have

too

> > much or too little of. Sounds alittle invasive to me. It sounded

> > great when I talked to him but I think we all are looking for

> > the " miracle " for our child and I don't want to cloud my

decisions

> > that way. So I need to get info and think on that one. Plus it

will

> > be VERY expensive.

> >

> > So I have babbled long enough. Please flood me with ideas and

> > thoughts now.

> >

> > Thank yu

> > Chrissy in PA

> >

>

>

>

>

>

>

>

>