Re: slow or no response to Fish oils, E (??)

[Guest guest]

Not everyone sees the immediate results. With my son I really didn't know the

fish oil was helping it was so gradual. BUT when we were moving (he had been on

it about a year) I forgot to give it to him and he start stuttering. I mean it

was very noticeable. Then one other time I forgot the Pro-Efa again and he

started stuttering again. That's when I knew how much it worked. Another time

when I knew he needed it he started stuttering again. I knew I was giving it to

him but couldn't figure out where this was coming from. Well about a week later

I found a stash of Pro-Efa when I was cleaning. He was hiding them! He'd only

take one and hide the other.

I think the Pro-Efa also helps his processing too. His sentences make more

sense when he's on his " fish " .. Almost like his thought process is more clear.

Anyway, please give it longer. He may be like my son where your not noticing

the surges but the progress is there and he most likely will benefit from it.

It can be a long slow process and unfortunately there's no " cure all " at least

not yet. If he's like my son you'll see nice steady progress with a few ups and

downs along the way.

Hope this helps,

Amy D

[ ] slow or no response to Fish oils, E (??)

When I read about the fish oil results in the Late Talker book I was so

excited! I almost could not contain myself. I felt so impatient about

it coming via the mail and wanted to start it yesterday. I told myself

that I HAD to remember not to get my hopes up too much. He's been on

the ProEfa , two a day for 3 weeks. I added 200 i.u. of E (natural d-

alpha toc.) for two weeks and 400 for the last week.

I'm worried that my grandson, 2.4 y.o. (who I'm raising, so more like a

son) may be one of the kids who doesn't benefit from the above. As I

read and re-read more and more stories of positive, and often

miraculous results, my hopes have soared. But today at the SLP's

office, she was commenting on what slow progress he's making, and how

this wont' be easy for him, and how it's going to be very slow

progress. AAAAAAAAAHHHHHHHHHH HHHHGGGGGGGGGGGG GG

Within the first week or two Treyvon learned a few more words (to add

to his repetoire (?) of 6-10 words), started singing (not real words

but making sounds for the words of songs) and babbling more, I

thought. But the last week has brought no changes.

I'm so overwhelmed with sadness. I read the post re: the FAQs today

and saw in there that people see results in between 7 days to 6 weeks.

I've heard a range as well, but it seems that for many kids the

benefits of the oils are so dramatic and quick. I fear he may be a non

responder or that it will help but not as much as it does for many.

Truly, with all of my heart I am so happy for the parents and kids who

are seeing benefits. I often cry with joy for them, and hope for

Treyvon, as I read the happy posts. But I am realizing that despite my

intentions, to not get my hopes up too much, that I did do just that.

I hesitiated to write this because I don't want to be a " downer " but I

also know that no one else will understand the despair I and others

feel, as this group does, when it comes to fearing our kids won't ever

catch up,or that I/we won't be able to have conversations with our kids

any time soon. When I take Treyvon to preschool (where he is doing

really well despite only a few words) I sometimes just feel like

weeping when I hear the other kids in his class talking in full

sentences!! My daughters talked early, and my first daughter was such

a talker, I swear she could've been an attorney at age 2 (she was very

argumentative, quite the little negotiator). Treyvon's friends talk in

full sentences. I just want to hear him ask me a question, tell me he

loves me, tell me what he wants, tell me why he doesn't want something,

tell me about what he did at preschool, etc.

Thanks for " listening " and for being " there " .

Karyn, trying to hold on to hope (but be realistic)

[Guest guest]

If you only have him on " 2 capsules a day " - that's only 1/2 tsp.

Higher doses of fish oil really seem to be needed for many of the

apraxic children.

Are you using EFA? Double the dose and add 1 EPA. Then give it a

few more weeks and see if you notice a change. " A few new

words/sounds " sounds, started singing etc like progress to me. Give

it more time. To gain even a few more words and to start singing is

actually great progress for an apraxic child. But he may need

higher omega to move forward. -

> When I read about the fish oil results in the Late Talker book I

was so

> excited! I almost could not contain myself. I felt so impatient

about

> it coming via the mail and wanted to start it yesterday. I told

myself

> that I HAD to remember not to get my hopes up too much. He's been

on

> the ProEfa , two a day for 3 weeks. I added 200 i.u. of E

(natural d-

> alpha toc.) for two weeks and 400 for the last week.

>

> I'm worried that my grandson, 2.4 y.o. (who I'm raising, so more

like a

> son) may be one of the kids who doesn't benefit from the above.

As I

> read and re-read more and more stories of positive, and often

> miraculous results, my hopes have soared. But today at the SLP's

> office, she was commenting on what slow progress he's making, and

how

> this wont' be easy for him, and how it's going to be very slow

> progress. AAAAAAAAAHHHHHHHHHHHHHHGGGGGGGGGGGGGG

>

> Within the first week or two Treyvon learned a few more words (to

add

> to his repetoire (?) of 6-10 words), started singing (not real

words

> but making sounds for the words of songs) and babbling more, I

> thought. But the last week has brought no changes.

>

> I'm so overwhelmed with sadness. I read the post re: the FAQs

today

> and saw in there that people see results in between 7 days to 6

weeks.

> I've heard a range as well, but it seems that for many kids the

> benefits of the oils are so dramatic and quick. I fear he may be

a non

> responder or that it will help but not as much as it does for

many.

> Truly, with all of my heart I am so happy for the parents and kids

who

> are seeing benefits. I often cry with joy for them, and hope for

> Treyvon, as I read the happy posts. But I am realizing that

despite my

> intentions, to not get my hopes up too much, that I did do just

that.

>

> I hesitiated to write this because I don't want to be a " downer "

but I

> also know that no one else will understand the despair I and

others

> feel, as this group does, when it comes to fearing our kids won't

ever

> catch up,or that I/we won't be able to have conversations with our

kids

> any time soon. When I take Treyvon to preschool (where he is

doing

> really well despite only a few words) I sometimes just feel like

> weeping when I hear the other kids in his class talking in full

> sentences!! My daughters talked early, and my first daughter was

such

> a talker, I swear she could've been an attorney at age 2 (she was

very

> argumentative, quite the little negotiator). Treyvon's friends

talk in

> full sentences. I just want to hear him ask me a question, tell

me he

> loves me, tell me what he wants, tell me why he doesn't want

something,

> tell me about what he did at preschool, etc.

>

> Thanks for " listening " and for being " there " .

> Karyn, trying to hold on to hope (but be realistic)

>

[Guest guest]

Not everyone sees the immediate results. With my son I really didn't know the

fish oil was helping it was so gradual. BUT when we were moving (he had been on

it about a year) I forgot to give it to him and he start stuttering. I mean it

was very noticeable. Then one other time I forgot the Pro-Efa again and he

started stuttering again. That's when I knew how much it worked. Another time

when I knew he needed it he started stuttering again. I knew I was giving it to

him but couldn't figure out where this was coming from. Well about a week later

I found a stash of Pro-Efa when I was cleaning. He was hiding them! He'd only

take one and hide the other.

I think the Pro-Efa also helps his processing too. His sentences make more

sense when he's on his " fish " .. Almost like his thought process is more clear.

Anyway, please give it longer. He may be like my son where your not noticing

the surges but the progress is there and he most likely will benefit from it.

It can be a long slow process and unfortunately there's no " cure all " at least

not yet. If he's like my son you'll see nice steady progress with a few ups and

downs along the way.

Hope this helps,

Amy D

[ ] slow or no response to Fish oils, E (??)

When I read about the fish oil results in the Late Talker book I was so

excited! I almost could not contain myself. I felt so impatient about

it coming via the mail and wanted to start it yesterday. I told myself

that I HAD to remember not to get my hopes up too much. He's been on

the ProEfa , two a day for 3 weeks. I added 200 i.u. of E (natural d-

alpha toc.) for two weeks and 400 for the last week.

I'm worried that my grandson, 2.4 y.o. (who I'm raising, so more like a

son) may be one of the kids who doesn't benefit from the above. As I

read and re-read more and more stories of positive, and often

miraculous results, my hopes have soared. But today at the SLP's

office, she was commenting on what slow progress he's making, and how

this wont' be easy for him, and how it's going to be very slow

progress. AAAAAAAAAHHHHHHHHHH HHHHGGGGGGGGGGGG GG

Within the first week or two Treyvon learned a few more words (to add

to his repetoire (?) of 6-10 words), started singing (not real words

but making sounds for the words of songs) and babbling more, I

thought. But the last week has brought no changes.

I'm so overwhelmed with sadness. I read the post re: the FAQs today

and saw in there that people see results in between 7 days to 6 weeks.

I've heard a range as well, but it seems that for many kids the

benefits of the oils are so dramatic and quick. I fear he may be a non

responder or that it will help but not as much as it does for many.

Truly, with all of my heart I am so happy for the parents and kids who

are seeing benefits. I often cry with joy for them, and hope for

Treyvon, as I read the happy posts. But I am realizing that despite my

intentions, to not get my hopes up too much, that I did do just that.

I hesitiated to write this because I don't want to be a " downer " but I

also know that no one else will understand the despair I and others

feel, as this group does, when it comes to fearing our kids won't ever

catch up,or that I/we won't be able to have conversations with our kids

any time soon. When I take Treyvon to preschool (where he is doing

really well despite only a few words) I sometimes just feel like

weeping when I hear the other kids in his class talking in full

sentences!! My daughters talked early, and my first daughter was such

a talker, I swear she could've been an attorney at age 2 (she was very

argumentative, quite the little negotiator). Treyvon's friends talk in

full sentences. I just want to hear him ask me a question, tell me he

loves me, tell me what he wants, tell me why he doesn't want something,

tell me about what he did at preschool, etc.

Thanks for " listening " and for being " there " .

Karyn, trying to hold on to hope (but be realistic)

[Guest guest]

If you only have him on " 2 capsules a day " - that's only 1/2 tsp.

Higher doses of fish oil really seem to be needed for many of the

apraxic children.

Are you using EFA? Double the dose and add 1 EPA. Then give it a

few more weeks and see if you notice a change. " A few new

words/sounds " sounds, started singing etc like progress to me. Give

it more time. To gain even a few more words and to start singing is

actually great progress for an apraxic child. But he may need

higher omega to move forward. -

> When I read about the fish oil results in the Late Talker book I

was so

> excited! I almost could not contain myself. I felt so impatient

about

> it coming via the mail and wanted to start it yesterday. I told

myself

> that I HAD to remember not to get my hopes up too much. He's been

on

> the ProEfa , two a day for 3 weeks. I added 200 i.u. of E

(natural d-

> alpha toc.) for two weeks and 400 for the last week.

>

> I'm worried that my grandson, 2.4 y.o. (who I'm raising, so more

like a

> son) may be one of the kids who doesn't benefit from the above.

As I

> read and re-read more and more stories of positive, and often

> miraculous results, my hopes have soared. But today at the SLP's

> office, she was commenting on what slow progress he's making, and

how

> this wont' be easy for him, and how it's going to be very slow

> progress. AAAAAAAAAHHHHHHHHHHHHHHGGGGGGGGGGGGGG

>

> Within the first week or two Treyvon learned a few more words (to

add

> to his repetoire (?) of 6-10 words), started singing (not real

words

> but making sounds for the words of songs) and babbling more, I

> thought. But the last week has brought no changes.

>

> I'm so overwhelmed with sadness. I read the post re: the FAQs

today

> and saw in there that people see results in between 7 days to 6

weeks.

> I've heard a range as well, but it seems that for many kids the

> benefits of the oils are so dramatic and quick. I fear he may be

a non

> responder or that it will help but not as much as it does for

many.

> Truly, with all of my heart I am so happy for the parents and kids

who

> are seeing benefits. I often cry with joy for them, and hope for

> Treyvon, as I read the happy posts. But I am realizing that

despite my

> intentions, to not get my hopes up too much, that I did do just

that.

>

> I hesitiated to write this because I don't want to be a " downer "

but I

> also know that no one else will understand the despair I and

others

> feel, as this group does, when it comes to fearing our kids won't

ever

> catch up,or that I/we won't be able to have conversations with our

kids

> any time soon. When I take Treyvon to preschool (where he is

doing

> really well despite only a few words) I sometimes just feel like

> weeping when I hear the other kids in his class talking in full

> sentences!! My daughters talked early, and my first daughter was

such

> a talker, I swear she could've been an attorney at age 2 (she was

very

> argumentative, quite the little negotiator). Treyvon's friends

talk in

> full sentences. I just want to hear him ask me a question, tell

me he

> loves me, tell me what he wants, tell me why he doesn't want

something,

> tell me about what he did at preschool, etc.

>

> Thanks for " listening " and for being " there " .

> Karyn, trying to hold on to hope (but be realistic)

>

[Guest guest]

Hi Karyn-

Most of us have been where you are now - just remember that every

child is different, and you will find what works for your grandson. I

would encourage you to try carnaware (carnaware.com). It helped my

daughter tremendously (4 caps/day). She saw fairly minimal benefit

from EFAs alone, but carnaware made a big difference relatively quickly.

good luck!

> If you only have him on " 2 capsules a day " - that's only 1/2 tsp.

> Higher doses of fish oil really seem to be needed for many of the

> apraxic children.

>

> Are you using EFA? Double the dose and add 1 EPA. Then give it a

> few more weeks and see if you notice a change. " A few new

> words/sounds " sounds, started singing etc like progress to me. Give

> it more time. To gain even a few more words and to start singing is

> actually great progress for an apraxic child. But he may need

> higher omega to move forward. -

>

>

> > When I read about the fish oil results in the Late Talker book I

> was so

> > excited! I almost could not contain myself. I felt so impatient

> about

> > it coming via the mail and wanted to start it yesterday. I told

> myself

> > that I HAD to remember not to get my hopes up too much. He's been

> on

> > the ProEfa , two a day for 3 weeks. I added 200 i.u. of E

> (natural d-

> > alpha toc.) for two weeks and 400 for the last week.

> >

> > I'm worried that my grandson, 2.4 y.o. (who I'm raising, so more

> like a

> > son) may be one of the kids who doesn't benefit from the above.

> As I

> > read and re-read more and more stories of positive, and often

> > miraculous results, my hopes have soared. But today at the SLP's

> > office, she was commenting on what slow progress he's making, and

> how

> > this wont' be easy for him, and how it's going to be very slow

> > progress. AAAAAAAAAHHHHHHHHHHHHHHGGGGGGGGGGGGGG

> >

> > Within the first week or two Treyvon learned a few more words (to

> add

> > to his repetoire (?) of 6-10 words), started singing (not real

> words

> > but making sounds for the words of songs) and babbling more, I

> > thought. But the last week has brought no changes.

> >

> > I'm so overwhelmed with sadness. I read the post re: the FAQs

> today

> > and saw in there that people see results in between 7 days to 6

> weeks.

> > I've heard a range as well, but it seems that for many kids the

> > benefits of the oils are so dramatic and quick. I fear he may be

> a non

> > responder or that it will help but not as much as it does for

> many.

> > Truly, with all of my heart I am so happy for the parents and kids

> who

> > are seeing benefits. I often cry with joy for them, and hope for

> > Treyvon, as I read the happy posts. But I am realizing that

> despite my

> > intentions, to not get my hopes up too much, that I did do just

> that.

> >

> > I hesitiated to write this because I don't want to be a " downer "

> but I

> > also know that no one else will understand the despair I and

> others

> > feel, as this group does, when it comes to fearing our kids won't

> ever

> > catch up,or that I/we won't be able to have conversations with our

> kids

> > any time soon. When I take Treyvon to preschool (where he is

> doing

> > really well despite only a few words) I sometimes just feel like

> > weeping when I hear the other kids in his class talking in full

> > sentences!! My daughters talked early, and my first daughter was

> such

> > a talker, I swear she could've been an attorney at age 2 (she was

> very

> > argumentative, quite the little negotiator). Treyvon's friends

> talk in

> > full sentences. I just want to hear him ask me a question, tell

> me he

> > loves me, tell me what he wants, tell me why he doesn't want

> something,

> > tell me about what he did at preschool, etc.

> >

> > Thanks for " listening " and for being " there " .

> > Karyn, trying to hold on to hope (but be realistic)

> >

>

[Guest guest]

Karyn-

You are not a downer. It is so important for everyone here to know

that there are children for whom there is no miracle cure. We have

all gotten our hopes up that some day (soon!) maybe there would be a

magic pill that would repair our kids faulty neurological systems. In

some instances here, that actually seems to be the case. But it has

not happened for my son - no miracles with EFAs or E. He takes them,

and I do see some subtle signs of improvement. But, at 7 years old,

he remains highly apraxic in spite of several years of EFAs, and

massive amounts of all kinds of therapies.

>

> When I read about the fish oil results in the Late Talker book I was so

> excited! I almost could not contain myself. I felt so impatient about

> it coming via the mail and wanted to start it yesterday. I told myself

> that I HAD to remember not to get my hopes up too much. He's been on

> the ProEfa , two a day for 3 weeks. I added 200 i.u. of E (natural d-

> alpha toc.) for two weeks and 400 for the last week.

>

> I'm worried that my grandson, 2.4 y.o. (who I'm raising, so more like a

> son) may be one of the kids who doesn't benefit from the above. As I

> read and re-read more and more stories of positive, and often

> miraculous results, my hopes have soared. But today at the SLP's

> office, she was commenting on what slow progress he's making, and how

> this wont' be easy for him, and how it's going to be very slow

> progress. AAAAAAAAAHHHHHHHHHHHHHHGGGGGGGGGGGGGG

>

> Within the first week or two Treyvon learned a few more words (to add

> to his repetoire (?) of 6-10 words), started singing (not real words

> but making sounds for the words of songs) and babbling more, I

> thought. But the last week has brought no changes.

>

> I'm so overwhelmed with sadness. I read the post re: the FAQs today

> and saw in there that people see results in between 7 days to 6 weeks.

> I've heard a range as well, but it seems that for many kids the

> benefits of the oils are so dramatic and quick. I fear he may be a non

> responder or that it will help but not as much as it does for many.

> Truly, with all of my heart I am so happy for the parents and kids who

> are seeing benefits. I often cry with joy for them, and hope for

> Treyvon, as I read the happy posts. But I am realizing that despite my

> intentions, to not get my hopes up too much, that I did do just that.

>

> I hesitiated to write this because I don't want to be a " downer " but I

> also know that no one else will understand the despair I and others

> feel, as this group does, when it comes to fearing our kids won't ever

> catch up,or that I/we won't be able to have conversations with our kids

> any time soon. When I take Treyvon to preschool (where he is doing

> really well despite only a few words) I sometimes just feel like

> weeping when I hear the other kids in his class talking in full

> sentences!! My daughters talked early, and my first daughter was such

> a talker, I swear she could've been an attorney at age 2 (she was very

> argumentative, quite the little negotiator). Treyvon's friends talk in

> full sentences. I just want to hear him ask me a question, tell me he

> loves me, tell me what he wants, tell me why he doesn't want something,

> tell me about what he did at preschool, etc.

>

> Thanks for " listening " and for being " there " .

> Karyn, trying to hold on to hope (but be realistic)

>

[Guest guest]

My youngest is now 40 mos. He's been in therapy for 10 mos and been

taking fish oils since Feb (we doubled the dose in Aug). He's not

had super dramatic improvements in his speech on the oils but it's

improved to the point where he no longer grunts and cries but

approximates ( " Mama oh oh ee " for " Mama Cocoa please " ).

6-10 words is great! Mine says " mama " , " dada " , " nana " (for his

sister not banana), " me " , and " no " . He approximates all the

time like " oh ee " for his older brother " " . Yesterday he

said " old me " instead of just holding his arms up! Wow!

Your grandson is about the age mine was when he started speech

therapy (mine was 30 mos). When my son started occupational therapy

in August he was approximating even more! Is your grandson in speech

therapy? Mine goes twice a week for 30 minutes each session to

speech therapy and the same schedule for occupational therapy. We

also work with him at home on his therapy homework. I think the

combination of fish oils and therapy is important for children like

ours.

It's okay to feel down. We all feel that way too. You can post

knowing we can truly empathize here. {{{Hugs}}} My parents and in-

laws are hand off. I wanted to let you know you are a gem in your

grandson's life that you are posting here about him.

Sincerely,

Debra

>

> When I read about the fish oil results in the Late Talker book I

was so

> excited! I almost could not contain myself. I felt so impatient

about

> it coming via the mail and wanted to start it yesterday. I told

myself

> that I HAD to remember not to get my hopes up too much. He's been

on

> the ProEfa , two a day for 3 weeks. I added 200 i.u. of E

(natural d-

> alpha toc.) for two weeks and 400 for the last week.

>

> I'm worried that my grandson, 2.4 y.o. (who I'm raising, so more

like a

> son) may be one of the kids who doesn't benefit from the above.

As I

> read and re-read more and more stories of positive, and often

> miraculous results, my hopes have soared. But today at the SLP's

> office, she was commenting on what slow progress he's making, and

how

> this wont' be easy for him, and how it's going to be very slow

> progress. AAAAAAAAAHHHHHHHHHHHHHHGGGGGGGGGGGGGG

>

> Within the first week or two Treyvon learned a few more words (to

add

> to his repetoire (?) of 6-10 words), started singing (not real

words

> but making sounds for the words of songs) and babbling more, I

> thought. But the last week has brought no changes.

>

> I'm so overwhelmed with sadness. I read the post re: the FAQs

today

> and saw in there that people see results in between 7 days to 6

weeks.

> I've heard a range as well, but it seems that for many kids the

> benefits of the oils are so dramatic and quick. I fear he may be

a non

> responder or that it will help but not as much as it does for

many.

> Truly, with all of my heart I am so happy for the parents and kids

who

> are seeing benefits. I often cry with joy for them, and hope for

> Treyvon, as I read the happy posts. But I am realizing that

despite my

> intentions, to not get my hopes up too much, that I did do just

that.

>

> I hesitiated to write this because I don't want to be a " downer "

but I

> also know that no one else will understand the despair I and

others

> feel, as this group does, when it comes to fearing our kids won't

ever

> catch up,or that I/we won't be able to have conversations with our

kids

> any time soon. When I take Treyvon to preschool (where he is

doing

> really well despite only a few words) I sometimes just feel like

> weeping when I hear the other kids in his class talking in full

> sentences!! My daughters talked early, and my first daughter was

such

> a talker, I swear she could've been an attorney at age 2 (she was

very

> argumentative, quite the little negotiator). Treyvon's friends

talk in

> full sentences. I just want to hear him ask me a question, tell

me he

> loves me, tell me what he wants, tell me why he doesn't want

something,

> tell me about what he did at preschool, etc.

>

> Thanks for " listening " and for being " there " .

> Karyn, trying to hold on to hope (but be realistic)

>

[Guest guest]

,

Your grandson is only 2.4 y.o. " Let not your heart be troubled " . My son had

perhaps the same number of words at his age and not very clear ones either.

He started Early Intervention at that age and at age 3 he was formally

diagnosed with severe apraxia (oral and verbal), hypotonia and sensory

processing issues. I thought like you and the other mothers that he would

never speak...I can tell you that today at age 5 that he is talking more

and more everyday...he's talking in sentences...no huge dialogues but the

sentence lengths are getting longer and clearer. His teacher were shocked

when they saw him in September after just the summer months. He's obtaining

more and more vocabulary everyday! I've had him on Pro-EFA, Pro-EPA,

Carnaware and lately Vitamin E. He has Speech Therapy 3x a week in School

and 2x a week privately along with OT which he gets 3x a week. All this in

combination have made the difference. I like you thought he would never be

able to communicate. It was only a year ago that his teachers were

suggested using a Augmentative device. And everything has changed. Don't

despair. Just keep up on the therapy and perhaps introduce the supplements

and perhaps he'll improve like my son Sebastian did...I can only

pray....and hope...Positive thinking and positive feeback also counts a

great deal...I don't think my son ever realized he wasn't speaking like

others were.

Myra

" karen_peikert "

<jkpeikert@...

> cc:

Sent by: Subject:

[ ] Re: slow or no response to Fish oils, E (??)

@yaho

ogroups.com

10/20/2006 10:06 AM

Please respond to

Karyn-

You are not a downer. It is so important for everyone here to know

that there are children for whom there is no miracle cure. We have

all gotten our hopes up that some day (soon!) maybe there would be a

magic pill that would repair our kids faulty neurological systems. In

some instances here, that actually seems to be the case. But it has

not happened for my son - no miracles with EFAs or E. He takes them,

and I do see some subtle signs of improvement. But, at 7 years old,

he remains highly apraxic in spite of several years of EFAs, and

massive amounts of all kinds of therapies.

>

> When I read about the fish oil results in the Late Talker book I was so

> excited! I almost could not contain myself. I felt so impatient about

> it coming via the mail and wanted to start it yesterday. I told myself

> that I HAD to remember not to get my hopes up too much. He's been on

> the ProEfa , two a day for 3 weeks. I added 200 i.u. of E (natural d-

> alpha toc.) for two weeks and 400 for the last week.

>

> I'm worried that my grandson, 2.4 y.o. (who I'm raising, so more like a

> son) may be one of the kids who doesn't benefit from the above. As I

> read and re-read more and more stories of positive, and often

> miraculous results, my hopes have soared. But today at the SLP's

> office, she was commenting on what slow progress he's making, and how

> this wont' be easy for him, and how it's going to be very slow

> progress. AAAAAAAAAHHHHHHHHHHHHHHGGGGGGGGGGGGGG

>

> Within the first week or two Treyvon learned a few more words (to add

> to his repetoire (?) of 6-10 words), started singing (not real words

> but making sounds for the words of songs) and babbling more, I

> thought. But the last week has brought no changes.

>

> I'm so overwhelmed with sadness. I read the post re: the FAQs today

> and saw in there that people see results in between 7 days to 6 weeks.

> I've heard a range as well, but it seems that for many kids the

> benefits of the oils are so dramatic and quick. I fear he may be a non

> responder or that it will help but not as much as it does for many.

> Truly, with all of my heart I am so happy for the parents and kids who

> are seeing benefits. I often cry with joy for them, and hope for

> Treyvon, as I read the happy posts. But I am realizing that despite my

> intentions, to not get my hopes up too much, that I did do just that.

>

> I hesitiated to write this because I don't want to be a " downer " but I

> also know that no one else will understand the despair I and others

> feel, as this group does, when it comes to fearing our kids won't ever

> catch up,or that I/we won't be able to have conversations with our kids

> any time soon. When I take Treyvon to preschool (where he is doing

> really well despite only a few words) I sometimes just feel like

> weeping when I hear the other kids in his class talking in full

> sentences!! My daughters talked early, and my first daughter was such

> a talker, I swear she could've been an attorney at age 2 (she was very

> argumentative, quite the little negotiator). Treyvon's friends talk in

> full sentences. I just want to hear him ask me a question, tell me he

> loves me, tell me what he wants, tell me why he doesn't want something,

> tell me about what he did at preschool, etc.

>

> Thanks for " listening " and for being " there " .

> Karyn, trying to hold on to hope (but be realistic)

>

[Guest guest]

Hi Karyn,

I too am a grandma of an apraxic child. Her family lives 2 miles from me, so I

see her a lot and am so glad to be able to help my daughter. Maddie was

diagnosed with apraxia and difficult sensory issues at age 2. She's now 4 1/2

and has only 4 words, in spite of five sessions a week of speech therapy and 1

1/2 years in a public special needs preschool. She's been on Proefa and EPA for

a year and a half, and obviously has had no speech surges. A month ago we added

Vit E, and no surges from that either.

However, today she's such a different child than previously, so " typical " in

many ways other than speech. I attribute her delightful personality and happy

ways to many things: good therapists, a good teacher, the oils, her family, a

dairy-free diet, and sign language. She has a huge sign vocabulary taught her by

her mother, who researched it on the web and in books. We brought in a sign

interpreter who worked two long sessions with our whole family (aunts, uncles,

cousins etc) on Maddie's signs.

Now her mom and I are taking an ASL course, as Maddie has a sign teacher for 2

hours a week and is getting way ahead of us. Unfortunately she's losing this

delightful young woman in Dec., and will really miss her. Because of sign,

Maddie is an expressive storyteller, and we always know how she feels about

things and what she wants.

Sign does have drawbacks, of course. We're near Gallaudet University (now in

the throes of huge disturbances over the new college President), but the deaf

community doesn't accept hearing people. The hearing/speaking community accepts

Maddie, but most children don't know how to play with someone who doesn't talk.

Learning this takes some time, but I feel that through the years Maddie will

find friends who will figure it out, and even learn enough of her signs to

communicate. We think that a sophisticated communication device will be helpful

later with schoolwork.

And of course, we haven't given up the hope that Maddie will develop some kind

of speech. She's gone from not being able to make any of the mouth movements

necessary for speaking, to mastering many sounds and even putting some together

in good approximations. Her severe apraxia has made this a VERY slow process,

as you can see. Each tiny step has been a miracle to us.

So don't despair! Take each day as it comes, explore all new ideas and avenues

to progress, and find the best people you can to work with your precious

grandson. And keep on reading the postings here--there's so much shared

knowledge and encouragement!

Best wishes to you, Betsy

[Guest guest]

Hi Karyn-

Most of us have been where you are now - just remember that every

child is different, and you will find what works for your grandson. I

would encourage you to try carnaware (carnaware.com). It helped my

daughter tremendously (4 caps/day). She saw fairly minimal benefit

from EFAs alone, but carnaware made a big difference relatively quickly.

good luck!

> If you only have him on " 2 capsules a day " - that's only 1/2 tsp.

> Higher doses of fish oil really seem to be needed for many of the

> apraxic children.

>

> Are you using EFA? Double the dose and add 1 EPA. Then give it a

> few more weeks and see if you notice a change. " A few new

> words/sounds " sounds, started singing etc like progress to me. Give

> it more time. To gain even a few more words and to start singing is

> actually great progress for an apraxic child. But he may need

> higher omega to move forward. -

>

>

> > When I read about the fish oil results in the Late Talker book I

> was so

> > excited! I almost could not contain myself. I felt so impatient

> about

> > it coming via the mail and wanted to start it yesterday. I told

> myself

> > that I HAD to remember not to get my hopes up too much. He's been

> on

> > the ProEfa , two a day for 3 weeks. I added 200 i.u. of E

> (natural d-

> > alpha toc.) for two weeks and 400 for the last week.

> >

> > I'm worried that my grandson, 2.4 y.o. (who I'm raising, so more

> like a

> > son) may be one of the kids who doesn't benefit from the above.

> As I

> > read and re-read more and more stories of positive, and often

> > miraculous results, my hopes have soared. But today at the SLP's

> > office, she was commenting on what slow progress he's making, and

> how

> > this wont' be easy for him, and how it's going to be very slow

> > progress. AAAAAAAAAHHHHHHHHHHHHHHGGGGGGGGGGGGGG

> >

> > Within the first week or two Treyvon learned a few more words (to

> add

> > to his repetoire (?) of 6-10 words), started singing (not real

> words

> > but making sounds for the words of songs) and babbling more, I

> > thought. But the last week has brought no changes.

> >

> > I'm so overwhelmed with sadness. I read the post re: the FAQs

> today

> > and saw in there that people see results in between 7 days to 6

> weeks.

> > I've heard a range as well, but it seems that for many kids the

> > benefits of the oils are so dramatic and quick. I fear he may be

> a non

> > responder or that it will help but not as much as it does for

> many.

> > Truly, with all of my heart I am so happy for the parents and kids

> who

> > are seeing benefits. I often cry with joy for them, and hope for

> > Treyvon, as I read the happy posts. But I am realizing that

> despite my

> > intentions, to not get my hopes up too much, that I did do just

> that.

> >

> > I hesitiated to write this because I don't want to be a " downer "

> but I

> > also know that no one else will understand the despair I and

> others

> > feel, as this group does, when it comes to fearing our kids won't

> ever

> > catch up,or that I/we won't be able to have conversations with our

> kids

> > any time soon. When I take Treyvon to preschool (where he is

> doing

> > really well despite only a few words) I sometimes just feel like

> > weeping when I hear the other kids in his class talking in full

> > sentences!! My daughters talked early, and my first daughter was

> such

> > a talker, I swear she could've been an attorney at age 2 (she was

> very

> > argumentative, quite the little negotiator). Treyvon's friends

> talk in

> > full sentences. I just want to hear him ask me a question, tell

> me he

> > loves me, tell me what he wants, tell me why he doesn't want

> something,

> > tell me about what he did at preschool, etc.

> >

> > Thanks for " listening " and for being " there " .

> > Karyn, trying to hold on to hope (but be realistic)

> >

>

[Guest guest]

Karyn-

You are not a downer. It is so important for everyone here to know

that there are children for whom there is no miracle cure. We have

all gotten our hopes up that some day (soon!) maybe there would be a

magic pill that would repair our kids faulty neurological systems. In

some instances here, that actually seems to be the case. But it has

not happened for my son - no miracles with EFAs or E. He takes them,

and I do see some subtle signs of improvement. But, at 7 years old,

he remains highly apraxic in spite of several years of EFAs, and

massive amounts of all kinds of therapies.

>

> When I read about the fish oil results in the Late Talker book I was so

> excited! I almost could not contain myself. I felt so impatient about

> it coming via the mail and wanted to start it yesterday. I told myself

> that I HAD to remember not to get my hopes up too much. He's been on

> the ProEfa , two a day for 3 weeks. I added 200 i.u. of E (natural d-

> alpha toc.) for two weeks and 400 for the last week.

>

> I'm worried that my grandson, 2.4 y.o. (who I'm raising, so more like a

> son) may be one of the kids who doesn't benefit from the above. As I

> read and re-read more and more stories of positive, and often

> miraculous results, my hopes have soared. But today at the SLP's

> office, she was commenting on what slow progress he's making, and how

> this wont' be easy for him, and how it's going to be very slow

> progress. AAAAAAAAAHHHHHHHHHHHHHHGGGGGGGGGGGGGG

>

> Within the first week or two Treyvon learned a few more words (to add

> to his repetoire (?) of 6-10 words), started singing (not real words

> but making sounds for the words of songs) and babbling more, I

> thought. But the last week has brought no changes.

>

> I'm so overwhelmed with sadness. I read the post re: the FAQs today

> and saw in there that people see results in between 7 days to 6 weeks.

> I've heard a range as well, but it seems that for many kids the

> benefits of the oils are so dramatic and quick. I fear he may be a non

> responder or that it will help but not as much as it does for many.

> Truly, with all of my heart I am so happy for the parents and kids who

> are seeing benefits. I often cry with joy for them, and hope for

> Treyvon, as I read the happy posts. But I am realizing that despite my

> intentions, to not get my hopes up too much, that I did do just that.

>

> I hesitiated to write this because I don't want to be a " downer " but I

> also know that no one else will understand the despair I and others

> feel, as this group does, when it comes to fearing our kids won't ever

> catch up,or that I/we won't be able to have conversations with our kids

> any time soon. When I take Treyvon to preschool (where he is doing

> really well despite only a few words) I sometimes just feel like

> weeping when I hear the other kids in his class talking in full

> sentences!! My daughters talked early, and my first daughter was such

> a talker, I swear she could've been an attorney at age 2 (she was very

> argumentative, quite the little negotiator). Treyvon's friends talk in

> full sentences. I just want to hear him ask me a question, tell me he

> loves me, tell me what he wants, tell me why he doesn't want something,

> tell me about what he did at preschool, etc.

>

> Thanks for " listening " and for being " there " .

> Karyn, trying to hold on to hope (but be realistic)

>

[Guest guest]

My youngest is now 40 mos. He's been in therapy for 10 mos and been

taking fish oils since Feb (we doubled the dose in Aug). He's not

had super dramatic improvements in his speech on the oils but it's

improved to the point where he no longer grunts and cries but

approximates ( " Mama oh oh ee " for " Mama Cocoa please " ).

6-10 words is great! Mine says " mama " , " dada " , " nana " (for his

sister not banana), " me " , and " no " . He approximates all the

time like " oh ee " for his older brother " " . Yesterday he

said " old me " instead of just holding his arms up! Wow!

Your grandson is about the age mine was when he started speech

therapy (mine was 30 mos). When my son started occupational therapy

in August he was approximating even more! Is your grandson in speech

therapy? Mine goes twice a week for 30 minutes each session to

speech therapy and the same schedule for occupational therapy. We

also work with him at home on his therapy homework. I think the

combination of fish oils and therapy is important for children like

ours.

It's okay to feel down. We all feel that way too. You can post

knowing we can truly empathize here. {{{Hugs}}} My parents and in-

laws are hand off. I wanted to let you know you are a gem in your

grandson's life that you are posting here about him.

Sincerely,

Debra

>

> When I read about the fish oil results in the Late Talker book I

was so

> excited! I almost could not contain myself. I felt so impatient

about

> it coming via the mail and wanted to start it yesterday. I told

myself

> that I HAD to remember not to get my hopes up too much. He's been

on

> the ProEfa , two a day for 3 weeks. I added 200 i.u. of E

(natural d-

> alpha toc.) for two weeks and 400 for the last week.

>

> I'm worried that my grandson, 2.4 y.o. (who I'm raising, so more

like a

> son) may be one of the kids who doesn't benefit from the above.

As I

> read and re-read more and more stories of positive, and often

> miraculous results, my hopes have soared. But today at the SLP's

> office, she was commenting on what slow progress he's making, and

how

> this wont' be easy for him, and how it's going to be very slow

> progress. AAAAAAAAAHHHHHHHHHHHHHHGGGGGGGGGGGGGG

>

> Within the first week or two Treyvon learned a few more words (to

add

> to his repetoire (?) of 6-10 words), started singing (not real

words

> but making sounds for the words of songs) and babbling more, I

> thought. But the last week has brought no changes.

>

> I'm so overwhelmed with sadness. I read the post re: the FAQs

today

> and saw in there that people see results in between 7 days to 6

weeks.

> I've heard a range as well, but it seems that for many kids the

> benefits of the oils are so dramatic and quick. I fear he may be

a non

> responder or that it will help but not as much as it does for

many.

> Truly, with all of my heart I am so happy for the parents and kids

who

> are seeing benefits. I often cry with joy for them, and hope for

> Treyvon, as I read the happy posts. But I am realizing that

despite my

> intentions, to not get my hopes up too much, that I did do just

that.

>

> I hesitiated to write this because I don't want to be a " downer "

but I

> also know that no one else will understand the despair I and

others

> feel, as this group does, when it comes to fearing our kids won't

ever

> catch up,or that I/we won't be able to have conversations with our

kids

> any time soon. When I take Treyvon to preschool (where he is

doing

> really well despite only a few words) I sometimes just feel like

> weeping when I hear the other kids in his class talking in full

> sentences!! My daughters talked early, and my first daughter was

such

> a talker, I swear she could've been an attorney at age 2 (she was

very

> argumentative, quite the little negotiator). Treyvon's friends

talk in

> full sentences. I just want to hear him ask me a question, tell

me he

> loves me, tell me what he wants, tell me why he doesn't want

something,

> tell me about what he did at preschool, etc.

>

> Thanks for " listening " and for being " there " .

> Karyn, trying to hold on to hope (but be realistic)

>

[Guest guest]

,

Your grandson is only 2.4 y.o. " Let not your heart be troubled " . My son had

perhaps the same number of words at his age and not very clear ones either.

He started Early Intervention at that age and at age 3 he was formally

diagnosed with severe apraxia (oral and verbal), hypotonia and sensory

processing issues. I thought like you and the other mothers that he would

never speak...I can tell you that today at age 5 that he is talking more

and more everyday...he's talking in sentences...no huge dialogues but the

sentence lengths are getting longer and clearer. His teacher were shocked

when they saw him in September after just the summer months. He's obtaining

more and more vocabulary everyday! I've had him on Pro-EFA, Pro-EPA,

Carnaware and lately Vitamin E. He has Speech Therapy 3x a week in School

and 2x a week privately along with OT which he gets 3x a week. All this in

combination have made the difference. I like you thought he would never be

able to communicate. It was only a year ago that his teachers were

suggested using a Augmentative device. And everything has changed. Don't

despair. Just keep up on the therapy and perhaps introduce the supplements

and perhaps he'll improve like my son Sebastian did...I can only

pray....and hope...Positive thinking and positive feeback also counts a

great deal...I don't think my son ever realized he wasn't speaking like

others were.

Myra

" karen_peikert "

<jkpeikert@...

> cc:

Sent by: Subject:

[ ] Re: slow or no response to Fish oils, E (??)

@yaho

ogroups.com

10/20/2006 10:06 AM

Please respond to

Karyn-

You are not a downer. It is so important for everyone here to know

that there are children for whom there is no miracle cure. We have

all gotten our hopes up that some day (soon!) maybe there would be a

magic pill that would repair our kids faulty neurological systems. In

some instances here, that actually seems to be the case. But it has

not happened for my son - no miracles with EFAs or E. He takes them,

and I do see some subtle signs of improvement. But, at 7 years old,

he remains highly apraxic in spite of several years of EFAs, and

massive amounts of all kinds of therapies.

>

> When I read about the fish oil results in the Late Talker book I was so

> excited! I almost could not contain myself. I felt so impatient about

> it coming via the mail and wanted to start it yesterday. I told myself

> that I HAD to remember not to get my hopes up too much. He's been on

> the ProEfa , two a day for 3 weeks. I added 200 i.u. of E (natural d-

> alpha toc.) for two weeks and 400 for the last week.

>

> I'm worried that my grandson, 2.4 y.o. (who I'm raising, so more like a

> son) may be one of the kids who doesn't benefit from the above. As I

> read and re-read more and more stories of positive, and often

> miraculous results, my hopes have soared. But today at the SLP's

> office, she was commenting on what slow progress he's making, and how

> this wont' be easy for him, and how it's going to be very slow

> progress. AAAAAAAAAHHHHHHHHHHHHHHGGGGGGGGGGGGGG

>

> Within the first week or two Treyvon learned a few more words (to add

> to his repetoire (?) of 6-10 words), started singing (not real words

> but making sounds for the words of songs) and babbling more, I

> thought. But the last week has brought no changes.

>

> I'm so overwhelmed with sadness. I read the post re: the FAQs today

> and saw in there that people see results in between 7 days to 6 weeks.

> I've heard a range as well, but it seems that for many kids the

> benefits of the oils are so dramatic and quick. I fear he may be a non

> responder or that it will help but not as much as it does for many.

> Truly, with all of my heart I am so happy for the parents and kids who

> are seeing benefits. I often cry with joy for them, and hope for

> Treyvon, as I read the happy posts. But I am realizing that despite my

> intentions, to not get my hopes up too much, that I did do just that.

>

> I hesitiated to write this because I don't want to be a " downer " but I

> also know that no one else will understand the despair I and others

> feel, as this group does, when it comes to fearing our kids won't ever

> catch up,or that I/we won't be able to have conversations with our kids

> any time soon. When I take Treyvon to preschool (where he is doing

> really well despite only a few words) I sometimes just feel like

> weeping when I hear the other kids in his class talking in full

> sentences!! My daughters talked early, and my first daughter was such

> a talker, I swear she could've been an attorney at age 2 (she was very

> argumentative, quite the little negotiator). Treyvon's friends talk in

> full sentences. I just want to hear him ask me a question, tell me he

> loves me, tell me what he wants, tell me why he doesn't want something,

> tell me about what he did at preschool, etc.

>

> Thanks for " listening " and for being " there " .

> Karyn, trying to hold on to hope (but be realistic)

>

[Guest guest]

Hi Karyn,

I too am a grandma of an apraxic child. Her family lives 2 miles from me, so I

see her a lot and am so glad to be able to help my daughter. Maddie was

diagnosed with apraxia and difficult sensory issues at age 2. She's now 4 1/2

and has only 4 words, in spite of five sessions a week of speech therapy and 1

1/2 years in a public special needs preschool. She's been on Proefa and EPA for

a year and a half, and obviously has had no speech surges. A month ago we added

Vit E, and no surges from that either.

However, today she's such a different child than previously, so " typical " in

many ways other than speech. I attribute her delightful personality and happy

ways to many things: good therapists, a good teacher, the oils, her family, a

dairy-free diet, and sign language. She has a huge sign vocabulary taught her by

her mother, who researched it on the web and in books. We brought in a sign

interpreter who worked two long sessions with our whole family (aunts, uncles,

cousins etc) on Maddie's signs.

Now her mom and I are taking an ASL course, as Maddie has a sign teacher for 2

hours a week and is getting way ahead of us. Unfortunately she's losing this

delightful young woman in Dec., and will really miss her. Because of sign,

Maddie is an expressive storyteller, and we always know how she feels about

things and what she wants.

Sign does have drawbacks, of course. We're near Gallaudet University (now in

the throes of huge disturbances over the new college President), but the deaf

community doesn't accept hearing people. The hearing/speaking community accepts

Maddie, but most children don't know how to play with someone who doesn't talk.

Learning this takes some time, but I feel that through the years Maddie will

find friends who will figure it out, and even learn enough of her signs to

communicate. We think that a sophisticated communication device will be helpful

later with schoolwork.

And of course, we haven't given up the hope that Maddie will develop some kind

of speech. She's gone from not being able to make any of the mouth movements

necessary for speaking, to mastering many sounds and even putting some together

in good approximations. Her severe apraxia has made this a VERY slow process,

as you can see. Each tiny step has been a miracle to us.

So don't despair! Take each day as it comes, explore all new ideas and avenues

to progress, and find the best people you can to work with your precious

grandson. And keep on reading the postings here--there's so much shared

knowledge and encouragement!

Best wishes to you, Betsy

[Guest guest]

Hi Betsy, I read your email on the apraxia listserve this morning. I

am a speech therapist in private practice who specializes in

apraxia. I was happy to hear that your granddaughter is doing so

well with signs but I wanted to also suggest you look into cued

speech now that she is getting older and will be learning to read and

write soon. Sign language for younger children with apraxia in my

opinion is a very good technique to start but as the child grows,

sign language has limitations when it comes to reading comprehension

and improving her expressive language skills (grammar and syntax). I

would recommend looking at the cued speech website and using this to

supplement her expressive language skills as well. I like it because

it also promotes speech approximations so the child often picks up

the sound system too. It also has it's start with the hearing

impaired population and there are many in the auditory-verbal sign

language group who are not advocates. But I have seen the results of

those children who also use cued speech and it has been very

impressive. One of the things I like about cued speech vs just A-V /

sign language is the reading comprehension skills for the cued speech

users surpasses the signing only kids by leaps and bounds. Many of

the cued speech kids go on to the college level where this is often

not the case for signing only kids.

Here is the website. www.cuedspeech.org. Hopefully you are nearby

some interpreters that can help even more. They also have great

weekend and week long camps that families go to learn the basics and

there are other follow up retreats. If you have any questions,

please don't hesitate to contact me. Dianne

On Oct 20, 2006, at 3:20 PM, Betsy wrote:

> Hi Karyn,

>

> I too am a grandma of an apraxic child. Her family lives 2 miles

> from me, so I see her a lot and am so glad to be able to help my

> daughter. Maddie was diagnosed with apraxia and difficult sensory

> issues at age 2. She's now 4 1/2 and has only 4 words, in spite of

> five sessions a week of speech therapy and 1 1/2 years in a public

> special needs preschool. She's been on Proefa and EPA for a year

> and a half, and obviously has had no speech surges. A month ago we

> added Vit E, and no surges from that either.

>

> However, today she's such a different child than previously, so

> " typical " in many ways other than speech. I attribute her

> delightful personality and happy ways to many things: good

> therapists, a good teacher, the oils, her family, a dairy-free

> diet, and sign language. She has a huge sign vocabulary taught her

> by her mother, who researched it on the web and in books. We

> brought in a sign interpreter who worked two long sessions with our

> whole family (aunts, uncles, cousins etc) on Maddie's signs.

>

> Now her mom and I are taking an ASL course, as Maddie has a sign

> teacher for 2 hours a week and is getting way ahead of us.

> Unfortunately she's losing this delightful young woman in Dec., and

> will really miss her. Because of sign, Maddie is an expressive

> storyteller, and we always know how she feels about things and what

> she wants.

>

> Sign does have drawbacks, of course. We're near Gallaudet

> University (now in the throes of huge disturbances over the new

> college President), but the deaf community doesn't accept hearing

> people. The hearing/speaking community accepts Maddie, but most

> children don't know how to play with someone who doesn't talk.

> Learning this takes some time, but I feel that through the years

> Maddie will find friends who will figure it out, and even learn

> enough of her signs to communicate. We think that a sophisticated

> communication device will be helpful later with schoolwork.

>

> And of course, we haven't given up the hope that Maddie will

> develop some kind of speech. She's gone from not being able to make

> any of the mouth movements necessary for speaking, to mastering

> many sounds and even putting some together in good approximations.

> Her severe apraxia has made this a VERY slow process, as you can

> see. Each tiny step has been a miracle to us.

>

> So don't despair! Take each day as it comes, explore all new ideas

> and avenues to progress, and find the best people you can to work

> with your precious grandson. And keep on reading the postings

> here--there's so much shared knowledge and encouragement!

>

> Best wishes to you, Betsy

>

>

[Guest guest]

Hi ,

How heavy is your daughter? I have an 11 year old, 80lb autistic son

and am going to do a trial of carnaware soon. Thanks.

Dave

>

> Hi Karyn-

>

> Most of us have been where you are now - just remember that every

> child is different, and you will find what works for your

grandson. I

> would encourage you to try carnaware (carnaware.com). It helped my

> daughter tremendously (4 caps/day). She saw fairly minimal benefit

> from EFAs alone, but carnaware made a big difference relatively

quickly.

>

> good luck!

>

[Guest guest]

Hi Betsy, I read your email on the apraxia listserve this morning. I

am a speech therapist in private practice who specializes in

apraxia. I was happy to hear that your granddaughter is doing so

well with signs but I wanted to also suggest you look into cued

speech now that she is getting older and will be learning to read and

write soon. Sign language for younger children with apraxia in my

opinion is a very good technique to start but as the child grows,

sign language has limitations when it comes to reading comprehension

and improving her expressive language skills (grammar and syntax). I

would recommend looking at the cued speech website and using this to

supplement her expressive language skills as well. I like it because

it also promotes speech approximations so the child often picks up

the sound system too. It also has it's start with the hearing

impaired population and there are many in the auditory-verbal sign

language group who are not advocates. But I have seen the results of

those children who also use cued speech and it has been very

impressive. One of the things I like about cued speech vs just A-V /

sign language is the reading comprehension skills for the cued speech

users surpasses the signing only kids by leaps and bounds. Many of

the cued speech kids go on to the college level where this is often

not the case for signing only kids.

Here is the website. www.cuedspeech.org. Hopefully you are nearby

some interpreters that can help even more. They also have great

weekend and week long camps that families go to learn the basics and

there are other follow up retreats. If you have any questions,

please don't hesitate to contact me. Dianne

On Oct 20, 2006, at 3:20 PM, Betsy wrote:

> Hi Karyn,

>

> I too am a grandma of an apraxic child. Her family lives 2 miles

> from me, so I see her a lot and am so glad to be able to help my

> daughter. Maddie was diagnosed with apraxia and difficult sensory

> issues at age 2. She's now 4 1/2 and has only 4 words, in spite of

> five sessions a week of speech therapy and 1 1/2 years in a public

> special needs preschool. She's been on Proefa and EPA for a year

> and a half, and obviously has had no speech surges. A month ago we

> added Vit E, and no surges from that either.

>

> However, today she's such a different child than previously, so

> " typical " in many ways other than speech. I attribute her

> delightful personality and happy ways to many things: good

> therapists, a good teacher, the oils, her family, a dairy-free

> diet, and sign language. She has a huge sign vocabulary taught her

> by her mother, who researched it on the web and in books. We

> brought in a sign interpreter who worked two long sessions with our

> whole family (aunts, uncles, cousins etc) on Maddie's signs.

>

> Now her mom and I are taking an ASL course, as Maddie has a sign

> teacher for 2 hours a week and is getting way ahead of us.

> Unfortunately she's losing this delightful young woman in Dec., and

> will really miss her. Because of sign, Maddie is an expressive

> storyteller, and we always know how she feels about things and what

> she wants.

>

> Sign does have drawbacks, of course. We're near Gallaudet

> University (now in the throes of huge disturbances over the new

> college President), but the deaf community doesn't accept hearing

> people. The hearing/speaking community accepts Maddie, but most

> children don't know how to play with someone who doesn't talk.

> Learning this takes some time, but I feel that through the years

> Maddie will find friends who will figure it out, and even learn

> enough of her signs to communicate. We think that a sophisticated

> communication device will be helpful later with schoolwork.

>

> And of course, we haven't given up the hope that Maddie will

> develop some kind of speech. She's gone from not being able to make

> any of the mouth movements necessary for speaking, to mastering

> many sounds and even putting some together in good approximations.

> Her severe apraxia has made this a VERY slow process, as you can

> see. Each tiny step has been a miracle to us.

>

> So don't despair! Take each day as it comes, explore all new ideas

> and avenues to progress, and find the best people you can to work

> with your precious grandson. And keep on reading the postings

> here--there's so much shared knowledge and encouragement!

>

> Best wishes to you, Betsy

>

>

[Guest guest]

Hi ,

How heavy is your daughter? I have an 11 year old, 80lb autistic son

and am going to do a trial of carnaware soon. Thanks.

Dave

>

> Hi Karyn-

>

> Most of us have been where you are now - just remember that every

> child is different, and you will find what works for your

grandson. I

> would encourage you to try carnaware (carnaware.com). It helped my

> daughter tremendously (4 caps/day). She saw fairly minimal benefit

> from EFAs alone, but carnaware made a big difference relatively

quickly.

>

> good luck!

>

[Guest guest]

I have a grandaughter that was diagnosed with severe apraxia. She will be 2

December 27th of this year..She started speech therapy 4 weeks ago twice a week

and is in the early intervention plan, I live within 3 miles and spend as much

time with her as possible. I work full time but her mom is a stay at home which

is great. My other grandaughter is 14 and has always excelled in everything and

is very involved in school. (cheer learder) and (french club and grade point

average of 3.5 so Olivia is just the most loving child but I think her parents

feel life this is something that she will out grow. I bought them the late

talker and finally got my daughter to start her on vit e this week. I would

love to hear from you about some of the things you have done to help your

granddaughter with her problems. My heart just breaks that she can't say

grannie and tell me when something is wrong or hurts. How did you potty train

her?

Rosemary

Betsy <mandybets@...> wrote:

Hi Karyn,

I too am a grandma of an apraxic child. Her family lives 2 miles from me, so I

see her a lot and am so glad to be able to help my daughter. Maddie was

diagnosed with apraxia and difficult sensory issues at age 2. She's now 4 1/2

and has only 4 words, in spite of five sessions a week of speech therapy and 1

1/2 years in a public special needs preschool. She's been on Proefa and EPA for

a year and a half, and obviously has had no speech surges. A month ago we added

Vit E, and no surges from that either.

However, today she's such a different child than previously, so " typical " in

many ways other than speech. I attribute her delightful personality and happy

ways to many things: good therapists, a good teacher, the oils, her family, a

dairy-free diet, and sign language. She has a huge sign vocabulary taught her by

her mother, who researched it on the web and in books. We brought in a sign

interpreter who worked two long sessions with our whole family (aunts, uncles,

cousins etc) on Maddie's signs.

Now her mom and I are taking an ASL course, as Maddie has a sign teacher for 2

hours a week and is getting way ahead of us. Unfortunately she's losing this

delightful young woman in Dec., and will really miss her. Because of sign,

Maddie is an expressive storyteller, and we always know how she feels about

things and what she wants.

Sign does have drawbacks, of course. We're near Gallaudet University (now in the

throes of huge disturbances over the new college President), but the deaf

community doesn't accept hearing people. The hearing/speaking community accepts

Maddie, but most children don't know how to play with someone who doesn't talk.

Learning this takes some time, but I feel that through the years Maddie will

find friends who will figure it out, and even learn enough of her signs to

communicate. We think that a sophisticated communication device will be helpful

later with schoolwork.

And of course, we haven't given up the hope that Maddie will develop some kind

of speech. She's gone from not being able to make any of the mouth movements

necessary for speaking, to mastering many sounds and even putting some together

in good approximations. Her severe apraxia has made this a VERY slow process, as

you can see. Each tiny step has been a miracle to us.

So don't despair! Take each day as it comes, explore all new ideas and avenues

to progress, and find the best people you can to work with your precious

grandson. And keep on reading the postings here--there's so much shared

knowledge and encouragement!

Best wishes to you, Betsy

[Guest guest]

I have a grandaughter that was diagnosed with severe apraxia. She will be 2

December 27th of this year..She started speech therapy 4 weeks ago twice a week

and is in the early intervention plan, I live within 3 miles and spend as much

time with her as possible. I work full time but her mom is a stay at home which

is great. My other grandaughter is 14 and has always excelled in everything and

is very involved in school. (cheer learder) and (french club and grade point

average of 3.5 so Olivia is just the most loving child but I think her parents

feel life this is something that she will out grow. I bought them the late

talker and finally got my daughter to start her on vit e this week. I would

love to hear from you about some of the things you have done to help your

granddaughter with her problems. My heart just breaks that she can't say

grannie and tell me when something is wrong or hurts. How did you potty train

her?

Rosemary

Betsy <mandybets@...> wrote:

Hi Karyn,

I too am a grandma of an apraxic child. Her family lives 2 miles from me, so I

see her a lot and am so glad to be able to help my daughter. Maddie was

diagnosed with apraxia and difficult sensory issues at age 2. She's now 4 1/2

and has only 4 words, in spite of five sessions a week of speech therapy and 1

1/2 years in a public special needs preschool. She's been on Proefa and EPA for

a year and a half, and obviously has had no speech surges. A month ago we added

Vit E, and no surges from that either.

However, today she's such a different child than previously, so " typical " in

many ways other than speech. I attribute her delightful personality and happy

ways to many things: good therapists, a good teacher, the oils, her family, a

dairy-free diet, and sign language. She has a huge sign vocabulary taught her by

her mother, who researched it on the web and in books. We brought in a sign

interpreter who worked two long sessions with our whole family (aunts, uncles,

cousins etc) on Maddie's signs.

Now her mom and I are taking an ASL course, as Maddie has a sign teacher for 2

hours a week and is getting way ahead of us. Unfortunately she's losing this

delightful young woman in Dec., and will really miss her. Because of sign,

Maddie is an expressive storyteller, and we always know how she feels about

things and what she wants.

Sign does have drawbacks, of course. We're near Gallaudet University (now in the

throes of huge disturbances over the new college President), but the deaf

community doesn't accept hearing people. The hearing/speaking community accepts

Maddie, but most children don't know how to play with someone who doesn't talk.

Learning this takes some time, but I feel that through the years Maddie will

find friends who will figure it out, and even learn enough of her signs to

communicate. We think that a sophisticated communication device will be helpful

later with schoolwork.

And of course, we haven't given up the hope that Maddie will develop some kind

of speech. She's gone from not being able to make any of the mouth movements

necessary for speaking, to mastering many sounds and even putting some together

in good approximations. Her severe apraxia has made this a VERY slow process, as

you can see. Each tiny step has been a miracle to us.

So don't despair! Take each day as it comes, explore all new ideas and avenues

to progress, and find the best people you can to work with your precious

grandson. And keep on reading the postings here--there's so much shared

knowledge and encouragement!

Best wishes to you, Betsy