Re: Progress with Apraxia clinical trial of omega 3/vit E

[Guest guest]

Best Wishes on your journey and thanks for helping heal my family.

, if Cherab sets up a fund for this please let me know where to

contribute.

>

> Hi Everyone,

>

> I just wanted to give you an update. As you know,I am more of a

> lurker these days. I am actively responding less to individual

posts

> since I feel at this point, my time is best spent trying to get a

> study done to validate this intervention for children with apraxia

so

> that everyone can benefit. This is where I can make the biggest

> impact, and I've pretty much shared with you all the information I

> have. At the same time, I realize how difficult it is to have so

many

> unanswered questions. But more definitive answers will only come

with

> controlled studies around apraxia treatments and underlying causes.

>

> I should hear from Autism Speaks about the grant by the end of may.

> It could go either way. If I do not get a study funded through

this

> pathway, perhaps fundraising for research through CHERAB is another

> alternative. Until a controlled study is done, no recommendations

can

> be made, and this information reaches only members of CHERAB. There

> are so many other families out there who could benefit from what we

> have learned. Although a project with Nordic Naturals providing a

> high vit E omega product for us fell through, I have since

identified

> am omega company that is willing and interested in making a

specific

> formula of high vit E/omega 3 for my clinical trial (and placebo),

> based on our apraxia experience of what is working. If all goes

> well, there may be a product available in the future with the

> combination of DHA/EPA and vit E (gamma and alpha) that seems to be

> helping a majority of kids trying it. This is very exciting, as it

> may decrease the confusion of multiple bottles, brands and dosing.

> Plus it will allow us to move forward with a clinical trial once

> funding for the study is secured. Can't do the study without the

> study intervention. This is all in early planning stages, so stay

> tuned. I will pass on more information as it becomes available.

This

> is an exciting move in the right direction.

>

> I am also in the middle of writing up the case series of

information

> we have collected on 184 children with apraxia with the plans to

> submit it to a pediatric journal. The contribution of everyone on

> this site who provided information on their children, plus

Geng

> and Tina McKenna's efforts have helped to create the largest set of

> information on children with verbal apraxia to date. It seems that

a

> syndrome of allergy, apraxia and malabsorption effects at least a

> subpopulation of these children. 4:1 ratio boys to girls, and a

> diagnosis of autism spectrum disorder is found in at least 25% of

the

> children. Common findings are coordination issues, sensory issues

(in

> particular abnormal pain sensation), low tone (particularly in the

> trunk), and of course verbal and often oral apraxia. Many kids have

> documented food and environmental allergies and asthma. Gut issues

> are also common. Multiple nutritional deficiencies are also

> identified. Carnitine deficiency is most striking, and gluten

> sensitivity with an elevated antigliadin antibody is found in 80%

of

> the kids tested...a much higher frequency than expected in the

normal

> population. All children tested have carriend the gene (HLA) for

> celiac disease/gluten sensitivity. Perhaps this is part of the

> genetic susceptibility. Needs further study. Zinc deficiency, fat

> soluble vit deficiencies are also common. 7/9 kids tested have

> abnormal fecat fat (suggestive of a fat malabsorption sydrome). And

> the exciting part is that 96% of families who tried vit E + omega 3

> saw improvements in speech, possibly also coordination and sensory

> issues. This is very exciting. The first step is to get a small

> controlled pilot study done...and the paper published to increase

> awareness of this overlooked condition and bring some science to a

> benign intervention that so many of us know is working for our

> children. These children warrant a bigger medical work-up than what

> is typically provided, and a trial of fish oil and vit E is pretty

> benign, and works for the majority.

>

> ph continues to thrive, and I am thankful every day for our

good

> fortune. I am still working towards turning our amazing story into

> something that benefits all the other kids out there who have his

> syndrome. Seems there are more and more of them every day. -

>

[Guest guest]

ironically in the apraxia world -words can't begin to express

the gratitude for all you have done to help all of our children.

Even so I want to say a huge THANK YOU. This group is made up of

thousands of parents and professionals and as far as I know all

support you. We'll make this happen!

PS -It's great to hear that ph's doing so well! Few know how far

he came but one day I'm sure many will. When they say " mother knows

best " they weren't kidding with you!

=====

[Guest guest]

I am so profoundly thankful that I could provide information to a

doctor who can actually help my son with regards to Apraxia. It's

frustrating being a parent and you have provided insight as both a

parent and a doctor. I sincerely appreciate your efforts and enjoy

reading your updates.

Sincerely,

Debra Ward

>

> Hi Everyone,

>

> I just wanted to give you an update. As you know,I am more of a

> lurker these days. I am actively responding less to individual

posts

> since I feel at this point, my time is best spent trying to get a

> study done to validate this intervention for children with apraxia

so

> that everyone can benefit. This is where I can make the biggest

> impact, and I've pretty much shared with you all the information I

> have. At the same time, I realize how difficult it is to have so

many

> unanswered questions. But more definitive answers will only come

with

> controlled studies around apraxia treatments and underlying causes.

>

> I should hear from Autism Speaks about the grant by the end of may.

> It could go either way. If I do not get a study funded through

this

> pathway, perhaps fundraising for research through CHERAB is another

> alternative. Until a controlled study is done, no recommendations

can

> be made, and this information reaches only members of CHERAB. There

> are so many other families out there who could benefit from what we

> have learned. Although a project with Nordic Naturals providing a

> high vit E omega product for us fell through, I have since

identified

> am omega company that is willing and interested in making a

specific

> formula of high vit E/omega 3 for my clinical trial (and placebo),

> based on our apraxia experience of what is working. If all goes

> well, there may be a product available in the future with the

> combination of DHA/EPA and vit E (gamma and alpha) that seems to be

> helping a majority of kids trying it. This is very exciting, as it

> may decrease the confusion of multiple bottles, brands and dosing.

> Plus it will allow us to move forward with a clinical trial once

> funding for the study is secured. Can't do the study without the

> study intervention. This is all in early planning stages, so stay

> tuned. I will pass on more information as it becomes available.

This

> is an exciting move in the right direction.

>

> I am also in the middle of writing up the case series of

information

> we have collected on 184 children with apraxia with the plans to

> submit it to a pediatric journal. The contribution of everyone on

> this site who provided information on their children, plus

Geng

> and Tina McKenna's efforts have helped to create the largest set of

> information on children with verbal apraxia to date. It seems that

a

> syndrome of allergy, apraxia and malabsorption effects at least a

> subpopulation of these children. 4:1 ratio boys to girls, and a

> diagnosis of autism spectrum disorder is found in at least 25% of

the

> children. Common findings are coordination issues, sensory issues

(in

> particular abnormal pain sensation), low tone (particularly in the

> trunk), and of course verbal and often oral apraxia. Many kids have

> documented food and environmental allergies and asthma. Gut issues

> are also common. Multiple nutritional deficiencies are also

> identified. Carnitine deficiency is most striking, and gluten

> sensitivity with an elevated antigliadin antibody is found in 80%

of

> the kids tested...a much higher frequency than expected in the

normal

> population. All children tested have carriend the gene (HLA) for

> celiac disease/gluten sensitivity. Perhaps this is part of the

> genetic susceptibility. Needs further study. Zinc deficiency, fat

> soluble vit deficiencies are also common. 7/9 kids tested have

> abnormal fecat fat (suggestive of a fat malabsorption sydrome). And

> the exciting part is that 96% of families who tried vit E + omega 3

> saw improvements in speech, possibly also coordination and sensory

> issues. This is very exciting. The first step is to get a small

> controlled pilot study done...and the paper published to increase

> awareness of this overlooked condition and bring some science to a

> benign intervention that so many of us know is working for our

> children. These children warrant a bigger medical work-up than what

> is typically provided, and a trial of fish oil and vit E is pretty

> benign, and works for the majority.

>

> ph continues to thrive, and I am thankful every day for our

good

> fortune. I am still working towards turning our amazing story into

> something that benefits all the other kids out there who have his

> syndrome. Seems there are more and more of them every day. -

>

[Guest guest]

Hi all

I have a question about vit E... My son Callum has severe global

dyspraxia (age 5 and non verbal - cant make a lot of the sounds he

needs to talk)... He also has sensory issues, severe concentration

deficit, gut issues and his vestibular syatem is really screwed up.

He has been on a variety of different fish oil combos since he was 6

months old - and none have had any discernible positive effect on

him. We just started vitamin E for the second time (first time was 2

yeasr ago and he turned into the living dead - he was hangy, his eyes

were glazed, eye contact reduced to zero, so after 2 weeks I removed

the Vit E and he was back to 'normal' (well our version of normal)

almost immediately. We are from Ireland and whilst in Miami on

holiday at Easter we saw a DAN doctor who put him on a series of

supplements and re-introduced the Vit E (different concentration high

gamma this time). Again - when I introduced it week and a half ago we

had the same negative reaction... So - have any of you had similar

response to Vit E? Is this normal and is it a barrier we should push

through? I have taken him off the Vit E 2 days ago and he is actually

better than he was before it - concentration enegry and attention

slightly better than before, but I imagine this will be short lived!!

>

> Hi Everyone,

>

> I just wanted to give you an update. As you know,I am more of a

> lurker these days. I am actively responding less to individual

posts

> since I feel at this point, my time is best spent trying to get a

> study done to validate this intervention for children with apraxia

so

> that everyone can benefit. This is where I can make the biggest

> impact, and I've pretty much shared with you all the information I

> have. At the same time, I realize how difficult it is to have so

many

> unanswered questions. But more definitive answers will only come

with

> controlled studies around apraxia treatments and underlying causes.

>

> I should hear from Autism Speaks about the grant by the end of may.

> It could go either way. If I do not get a study funded through

this

> pathway, perhaps fundraising for research through CHERAB is another

> alternative. Until a controlled study is done, no recommendations

can

> be made, and this information reaches only members of CHERAB. There

> are so many other families out there who could benefit from what we

> have learned. Although a project with Nordic Naturals providing a

> high vit E omega product for us fell through, I have since

identified

> am omega company that is willing and interested in making a

specific

> formula of high vit E/omega 3 for my clinical trial (and placebo),

> based on our apraxia experience of what is working. If all goes

> well, there may be a product available in the future with the

> combination of DHA/EPA and vit E (gamma and alpha) that seems to be

> helping a majority of kids trying it. This is very exciting, as it

> may decrease the confusion of multiple bottles, brands and dosing.

> Plus it will allow us to move forward with a clinical trial once

> funding for the study is secured. Can't do the study without the

> study intervention. This is all in early planning stages, so stay

> tuned. I will pass on more information as it becomes available.

This

> is an exciting move in the right direction.

>

> I am also in the middle of writing up the case series of

information

> we have collected on 184 children with apraxia with the plans to

> submit it to a pediatric journal. The contribution of everyone on

> this site who provided information on their children, plus

Geng

> and Tina McKenna's efforts have helped to create the largest set of

> information on children with verbal apraxia to date. It seems that

a

> syndrome of allergy, apraxia and malabsorption effects at least a

> subpopulation of these children. 4:1 ratio boys to girls, and a

> diagnosis of autism spectrum disorder is found in at least 25% of

the

> children. Common findings are coordination issues, sensory issues

(in

> particular abnormal pain sensation), low tone (particularly in the

> trunk), and of course verbal and often oral apraxia. Many kids have

> documented food and environmental allergies and asthma. Gut issues

> are also common. Multiple nutritional deficiencies are also

> identified. Carnitine deficiency is most striking, and gluten

> sensitivity with an elevated antigliadin antibody is found in 80%

of

> the kids tested...a much higher frequency than expected in the

normal

> population. All children tested have carriend the gene (HLA) for

> celiac disease/gluten sensitivity. Perhaps this is part of the

> genetic susceptibility. Needs further study. Zinc deficiency, fat

> soluble vit deficiencies are also common. 7/9 kids tested have

> abnormal fecat fat (suggestive of a fat malabsorption sydrome). And

> the exciting part is that 96% of families who tried vit E + omega 3

> saw improvements in speech, possibly also coordination and sensory

> issues. This is very exciting. The first step is to get a small

> controlled pilot study done...and the paper published to increase

> awareness of this overlooked condition and bring some science to a

> benign intervention that so many of us know is working for our

> children. These children warrant a bigger medical work-up than what

> is typically provided, and a trial of fish oil and vit E is pretty

> benign, and works for the majority.

>

> ph continues to thrive, and I am thankful every day for our

good

> fortune. I am still working towards turning our amazing story into

> something that benefits all the other kids out there who have his

> syndrome. Seems there are more and more of them every day. -

>

[Guest guest]

We had some wierd E stuff but found the right E at the right dose.

Have you seen this lab list?

/message/53124

E in celiacs may have to be managed differently than the formula that

works for most here.

I am pretty sure I read that here but not sure of the archive.

> >

> > Hi Everyone,

> >

> > I just wanted to give you an update. As you know,I am more of a

> > lurker these days. I am actively responding less to individual

> posts

> > since I feel at this point, my time is best spent trying to get a

> > study done to validate this intervention for children with

apraxia

> so

> > that everyone can benefit. This is where I can make the biggest

> > impact, and I've pretty much shared with you all the information

I

> > have. At the same time, I realize how difficult it is to have so

> many

> > unanswered questions. But more definitive answers will only come

> with

> > controlled studies around apraxia treatments and underlying

causes.

> >

> > I should hear from Autism Speaks about the grant by the end of

may.

> > It could go either way. If I do not get a study funded through

> this

> > pathway, perhaps fundraising for research through CHERAB is

another

> > alternative. Until a controlled study is done, no recommendations

> can

> > be made, and this information reaches only members of CHERAB.

There

> > are so many other families out there who could benefit from what

we

> > have learned. Although a project with Nordic Naturals providing a

> > high vit E omega product for us fell through, I have since

> identified

> > am omega company that is willing and interested in making a

> specific

> > formula of high vit E/omega 3 for my clinical trial (and

placebo),

> > based on our apraxia experience of what is working. If all goes

> > well, there may be a product available in the future with the

> > combination of DHA/EPA and vit E (gamma and alpha) that seems to

be

> > helping a majority of kids trying it. This is very exciting, as

it

> > may decrease the confusion of multiple bottles, brands and

dosing.

> > Plus it will allow us to move forward with a clinical trial once

> > funding for the study is secured. Can't do the study without the

> > study intervention. This is all in early planning stages, so stay

> > tuned. I will pass on more information as it becomes available.

> This

> > is an exciting move in the right direction.

> >

> > I am also in the middle of writing up the case series of

> information

> > we have collected on 184 children with apraxia with the plans to

> > submit it to a pediatric journal. The contribution of everyone on

> > this site who provided information on their children, plus

> Geng

> > and Tina McKenna's efforts have helped to create the largest set

of

> > information on children with verbal apraxia to date. It seems

that

> a

> > syndrome of allergy, apraxia and malabsorption effects at least a

> > subpopulation of these children. 4:1 ratio boys to girls, and a

> > diagnosis of autism spectrum disorder is found in at least 25% of

> the

> > children. Common findings are coordination issues, sensory issues

> (in

> > particular abnormal pain sensation), low tone (particularly in

the

> > trunk), and of course verbal and often oral apraxia. Many kids

have

> > documented food and environmental allergies and asthma. Gut

issues

> > are also common. Multiple nutritional deficiencies are also

> > identified. Carnitine deficiency is most striking, and gluten

> > sensitivity with an elevated antigliadin antibody is found in 80%

> of

> > the kids tested...a much higher frequency than expected in the

> normal

> > population. All children tested have carriend the gene (HLA) for

> > celiac disease/gluten sensitivity. Perhaps this is part of the

> > genetic susceptibility. Needs further study. Zinc deficiency,

fat

> > soluble vit deficiencies are also common. 7/9 kids tested have

> > abnormal fecat fat (suggestive of a fat malabsorption sydrome).

And

> > the exciting part is that 96% of families who tried vit E + omega

3

> > saw improvements in speech, possibly also coordination and

sensory

> > issues. This is very exciting. The first step is to get a small

> > controlled pilot study done...and the paper published to increase

> > awareness of this overlooked condition and bring some science to

a

> > benign intervention that so many of us know is working for our

> > children. These children warrant a bigger medical work-up than

what

> > is typically provided, and a trial of fish oil and vit E is

pretty

> > benign, and works for the majority.

> >

> > ph continues to thrive, and I am thankful every day for our

> good

> > fortune. I am still working towards turning our amazing story

into

> > something that benefits all the other kids out there who have his

> > syndrome. Seems there are more and more of them every day. -

> >

>

[Guest guest]

,

I wonder... could he be having problems with the soy? Many E formulas are soy

based and not every child can tolerate soy.....

is the expert on this but I thought I would toss that out there.

I am so glad that you are getting help for Callum!!! I have thought of you

often. How is your other boy? Did he see the DAN as well or was it just

Callum? Did you get testing done?

curious....

Janice

Mother of Mark, 13

[sPAM][ ] Re: Progress with Apraxia clinical trial

of omega 3/vit E

Hi all

I have a question about vit E... My son Callum has severe global

dyspraxia (age 5 and non verbal - cant make a lot of the sounds he

needs to talk)... He also has sensory issues, severe concentration

deficit, gut issues and his vestibular syatem is really screwed up.

He has been on a variety of different fish oil combos since he was 6

months old - and none have had any discernible positive effect on

him. We just started vitamin E for the second time (first time was 2

yeasr ago and he turned into the living dead - he was hangy, his eyes

were glazed, eye contact reduced to zero, so after 2 weeks I removed

the Vit E and he was back to 'normal' (well our version of normal)

almost immediately. We are from Ireland and whilst in Miami on

holiday at Easter we saw a DAN doctor who put him on a series of

supplements and re-introduced the Vit E (different concentration high

gamma this time). Again - when I introduced it week and a half ago we

had the same negative reaction... So - have any of you had similar

response to Vit E? Is this normal and is it a barrier we should push

through? I have taken him off the Vit E 2 days ago and he is actually

better than he was before it - concentration enegry and attention

slightly better than before, but I imagine this will be short lived!!

>

> Hi Everyone,

>

> I just wanted to give you an update. As you know,I am more of a

> lurker these days. I am actively responding less to individual

posts

> since I feel at this point, my time is best spent trying to get a

> study done to validate this intervention for children with apraxia

so

> that everyone can benefit. This is where I can make the biggest

> impact, and I've pretty much shared with you all the information I

> have. At the same time, I realize how difficult it is to have so

many

> unanswered questions. But more definitive answers will only come

with

> controlled studies around apraxia treatments and underlying causes.

>

> I should hear from Autism Speaks about the grant by the end of may.

> It could go either way. If I do not get a study funded through

this

> pathway, perhaps fundraising for research through CHERAB is another

> alternative. Until a controlled study is done, no recommendations

can

> be made, and this information reaches only members of CHERAB. There

> are so many other families out there who could benefit from what we

> have learned. Although a project with Nordic Naturals providing a

> high vit E omega product for us fell through, I have since

identified

> am omega company that is willing and interested in making a

specific

> formula of high vit E/omega 3 for my clinical trial (and placebo),

> based on our apraxia experience of what is working. If all goes

> well, there may be a product available in the future with the

> combination of DHA/EPA and vit E (gamma and alpha) that seems to be

> helping a majority of kids trying it. This is very exciting, as it

> may decrease the confusion of multiple bottles, brands and dosing.

> Plus it will allow us to move forward with a clinical trial once

> funding for the study is secured. Can't do the study without the

> study intervention. This is all in early planning stages, so stay

> tuned. I will pass on more information as it becomes available.

This

> is an exciting move in the right direction.

>

> I am also in the middle of writing up the case series of

information

> we have collected on 184 children with apraxia with the plans to

> submit it to a pediatric journal. The contribution of everyone on

> this site who provided information on their children, plus

Geng

> and Tina McKenna's efforts have helped to create the largest set of

> information on children with verbal apraxia to date. It seems that

a

> syndrome of allergy, apraxia and malabsorption effects at least a

> subpopulation of these children. 4:1 ratio boys to girls, and a

> diagnosis of autism spectrum disorder is found in at least 25% of

the

> children. Common findings are coordination issues, sensory issues

(in

> particular abnormal pain sensation), low tone (particularly in the

> trunk), and of course verbal and often oral apraxia. Many kids have

> documented food and environmental allergies and asthma. Gut issues

> are also common. Multiple nutritional deficiencies are also

> identified. Carnitine deficiency is most striking, and gluten

> sensitivity with an elevated antigliadin antibody is found in 80%

of

> the kids tested...a much higher frequency than expected in the

normal

> population. All children tested have carriend the gene (HLA) for

> celiac disease/gluten sensitivity. Perhaps this is part of the

> genetic susceptibility. Needs further study. Zinc deficiency, fat

> soluble vit deficiencies are also common. 7/9 kids tested have

> abnormal fecat fat (suggestive of a fat malabsorption sydrome). And

> the exciting part is that 96% of families who tried vit E + omega 3

> saw improvements in speech, possibly also coordination and sensory

> issues. This is very exciting. The first step is to get a small

> controlled pilot study done...and the paper published to increase

> awareness of this overlooked condition and bring some science to a

> benign intervention that so many of us know is working for our

> children. These children warrant a bigger medical work-up than what

> is typically provided, and a trial of fish oil and vit E is pretty

> benign, and works for the majority.

>

> ph continues to thrive, and I am thankful every day for our

good

> fortune. I am still working towards turning our amazing story into

> something that benefits all the other kids out there who have his

> syndrome. Seems there are more and more of them every day. -

>

[Guest guest]

One other thing we had here, E in the nonceliac but DQ1 positive kid

here with the speech and tone issues here ws initially problematic

because other vitamins were not in check. Only now can we even give

E. May help to get E and K plasma levels and look further. For us I

think that was unique to our fluoride issue and only mention it as

that is an issue where you live.

Don't give up. You can find a solution. I never thought we could and

it happened.

> > >

> > > Hi Everyone,

> > >

> > > I just wanted to give you an update. As you know,I am more of a

> > > lurker these days. I am actively responding less to individual

> > posts

> > > since I feel at this point, my time is best spent trying to get

a

> > > study done to validate this intervention for children with

> apraxia

> > so

> > > that everyone can benefit. This is where I can make the

biggest

> > > impact, and I've pretty much shared with you all the

information

> I

> > > have. At the same time, I realize how difficult it is to have

so

> > many

> > > unanswered questions. But more definitive answers will only

come

> > with

> > > controlled studies around apraxia treatments and underlying

> causes.

> > >

> > > I should hear from Autism Speaks about the grant by the end of

> may.

> > > It could go either way. If I do not get a study funded through

> > this

> > > pathway, perhaps fundraising for research through CHERAB is

> another

> > > alternative. Until a controlled study is done, no

recommendations

> > can

> > > be made, and this information reaches only members of CHERAB.

> There

> > > are so many other families out there who could benefit from

what

> we

> > > have learned. Although a project with Nordic Naturals providing

a

> > > high vit E omega product for us fell through, I have since

> > identified

> > > am omega company that is willing and interested in making a

> > specific

> > > formula of high vit E/omega 3 for my clinical trial (and

> placebo),

> > > based on our apraxia experience of what is working. If all

goes

> > > well, there may be a product available in the future with the

> > > combination of DHA/EPA and vit E (gamma and alpha) that seems

to

> be

> > > helping a majority of kids trying it. This is very exciting, as

> it

> > > may decrease the confusion of multiple bottles, brands and

> dosing.

> > > Plus it will allow us to move forward with a clinical trial

once

> > > funding for the study is secured. Can't do the study without

the

> > > study intervention. This is all in early planning stages, so

stay

> > > tuned. I will pass on more information as it becomes available.

> > This

> > > is an exciting move in the right direction.

> > >

> > > I am also in the middle of writing up the case series of

> > information

> > > we have collected on 184 children with apraxia with the plans

to

> > > submit it to a pediatric journal. The contribution of everyone

on

> > > this site who provided information on their children, plus

> > Geng

> > > and Tina McKenna's efforts have helped to create the largest

set

> of

> > > information on children with verbal apraxia to date. It seems

> that

> > a

> > > syndrome of allergy, apraxia and malabsorption effects at least

a

> > > subpopulation of these children. 4:1 ratio boys to girls, and a

> > > diagnosis of autism spectrum disorder is found in at least 25%

of

> > the

> > > children. Common findings are coordination issues, sensory

issues

> > (in

> > > particular abnormal pain sensation), low tone (particularly in

> the

> > > trunk), and of course verbal and often oral apraxia. Many kids

> have

> > > documented food and environmental allergies and asthma. Gut

> issues

> > > are also common. Multiple nutritional deficiencies are also

> > > identified. Carnitine deficiency is most striking, and gluten

> > > sensitivity with an elevated antigliadin antibody is found in

80%

> > of

> > > the kids tested...a much higher frequency than expected in the

> > normal

> > > population. All children tested have carriend the gene (HLA)

for

> > > celiac disease/gluten sensitivity. Perhaps this is part of the

> > > genetic susceptibility. Needs further study. Zinc deficiency,

> fat

> > > soluble vit deficiencies are also common. 7/9 kids tested have

> > > abnormal fecat fat (suggestive of a fat malabsorption sydrome).

> And

> > > the exciting part is that 96% of families who tried vit E +

omega

> 3

> > > saw improvements in speech, possibly also coordination and

> sensory

> > > issues. This is very exciting. The first step is to get a

small

> > > controlled pilot study done...and the paper published to

increase

> > > awareness of this overlooked condition and bring some science

to

> a

> > > benign intervention that so many of us know is working for our

> > > children. These children warrant a bigger medical work-up than

> what

> > > is typically provided, and a trial of fish oil and vit E is

> pretty

> > > benign, and works for the majority.

> > >

> > > ph continues to thrive, and I am thankful every day for our

> > good

> > > fortune. I am still working towards turning our amazing story

> into

> > > something that benefits all the other kids out there who have

his

> > > syndrome. Seems there are more and more of them every day. -

>

> > >

> >

>

[Guest guest]

Fantastic ! Thanks for posting. Knowing that AS is not on

board with biomeds, but do generate loads of cash. Maybe take a stab

and contact and see is she can push this grant through?

Worth a shot - she is absolutetly on board with biomedical and would

like to see the organization created with her son in mind doing more

research in this areana. You probably can track her down through

www.ageofautism.com. Just a thought.

>

> Hi Everyone,

>

> I just wanted to give you an update. As you know,I am more of a

> lurker these days. I am actively responding less to individual

posts

> since I feel at this point, my time is best spent trying to get a

> study done to validate this intervention for children with apraxia

so

> that everyone can benefit. This is where I can make the biggest

> impact, and I've pretty much shared with you all the information I

> have. At the same time, I realize how difficult it is to have so

many

> unanswered questions. But more definitive answers will only come

with

> controlled studies around apraxia treatments and underlying causes.

>

> I should hear from Autism Speaks about the grant by the end of may.

> It could go either way. If I do not get a study funded through

this

> pathway, perhaps fundraising for research through CHERAB is another

> alternative. Until a controlled study is done, no recommendations

can

> be made, and this information reaches only members of CHERAB. There

> are so many other families out there who could benefit from what we

> have learned. Although a project with Nordic Naturals providing a

> high vit E omega product for us fell through, I have since

identified

> am omega company that is willing and interested in making a

specific

> formula of high vit E/omega 3 for my clinical trial (and placebo),

> based on our apraxia experience of what is working. If all goes

> well, there may be a product available in the future with the

> combination of DHA/EPA and vit E (gamma and alpha) that seems to be

> helping a majority of kids trying it. This is very exciting, as it

> may decrease the confusion of multiple bottles, brands and dosing.

> Plus it will allow us to move forward with a clinical trial once

> funding for the study is secured. Can't do the study without the

> study intervention. This is all in early planning stages, so stay

> tuned. I will pass on more information as it becomes available.

This

> is an exciting move in the right direction.

>

> I am also in the middle of writing up the case series of

information

> we have collected on 184 children with apraxia with the plans to

> submit it to a pediatric journal. The contribution of everyone on

> this site who provided information on their children, plus

Geng

> and Tina McKenna's efforts have helped to create the largest set of

> information on children with verbal apraxia to date. It seems that

a

> syndrome of allergy, apraxia and malabsorption effects at least a

> subpopulation of these children. 4:1 ratio boys to girls, and a

> diagnosis of autism spectrum disorder is found in at least 25% of

the

> children. Common findings are coordination issues, sensory issues

(in

> particular abnormal pain sensation), low tone (particularly in the

> trunk), and of course verbal and often oral apraxia. Many kids have

> documented food and environmental allergies and asthma. Gut issues

> are also common. Multiple nutritional deficiencies are also

> identified. Carnitine deficiency is most striking, and gluten

> sensitivity with an elevated antigliadin antibody is found in 80%

of

> the kids tested...a much higher frequency than expected in the

normal

> population. All children tested have carriend the gene (HLA) for

> celiac disease/gluten sensitivity. Perhaps this is part of the

> genetic susceptibility. Needs further study. Zinc deficiency, fat

> soluble vit deficiencies are also common. 7/9 kids tested have

> abnormal fecat fat (suggestive of a fat malabsorption sydrome). And

> the exciting part is that 96% of families who tried vit E + omega 3

> saw improvements in speech, possibly also coordination and sensory

> issues. This is very exciting. The first step is to get a small

> controlled pilot study done...and the paper published to increase

> awareness of this overlooked condition and bring some science to a

> benign intervention that so many of us know is working for our

> children. These children warrant a bigger medical work-up than what

> is typically provided, and a trial of fish oil and vit E is pretty

> benign, and works for the majority.

>

> ph continues to thrive, and I am thankful every day for our

good

> fortune. I am still working towards turning our amazing story into

> something that benefits all the other kids out there who have his

> syndrome. Seems there are more and more of them every day. -

>

[Guest guest]

Although the soy protein is technically not supposed to be present in

the vit E - someone who is extremely soy allergic might manifest an

allergic response in this manner. When ph is exposed to anything

that contains mold or yeast, or was made from aspergillus (ie the

lipase brand we tried for his fat malabsorption) or yeast (most B-

vitamins and selenium), we got a similar reaction as you described.

Maybe it is an allergic rxn? There are soy-free vit E brands,although

they don't seem to work as well. Also need to make sure there is

gamma in your mix, as alpha supplementation depletes gamma. Dr. Ron's

Unique E is a soy-free brand with both natural alpha and gamma

tocopherol. -

> > > >

> > > > Hi Everyone,

> > > >

> > > > I just wanted to give you an update. As you know,I am more of

a

> > > > lurker these days. I am actively responding less to

individual

> > > posts

> > > > since I feel at this point, my time is best spent trying to

get

> a

> > > > study done to validate this intervention for children with

> > apraxia

> > > so

> > > > that everyone can benefit. This is where I can make the

> biggest

> > > > impact, and I've pretty much shared with you all the

> information

> > I

> > > > have. At the same time, I realize how difficult it is to have

> so

> > > many

> > > > unanswered questions. But more definitive answers will only

> come

> > > with

> > > > controlled studies around apraxia treatments and underlying

> > causes.

> > > >

> > > > I should hear from Autism Speaks about the grant by the end

of

> > may.

> > > > It could go either way. If I do not get a study funded

through

> > > this

> > > > pathway, perhaps fundraising for research through CHERAB is

> > another

> > > > alternative. Until a controlled study is done, no

> recommendations

> > > can

> > > > be made, and this information reaches only members of CHERAB.

> > There

> > > > are so many other families out there who could benefit from

> what

> > we

> > > > have learned. Although a project with Nordic Naturals

providing

> a

> > > > high vit E omega product for us fell through, I have since

> > > identified

> > > > am omega company that is willing and interested in making a

> > > specific

> > > > formula of high vit E/omega 3 for my clinical trial (and

> > placebo),

> > > > based on our apraxia experience of what is working. If all

> goes

> > > > well, there may be a product available in the future with the

> > > > combination of DHA/EPA and vit E (gamma and alpha) that seems

> to

> > be

> > > > helping a majority of kids trying it. This is very exciting,

as

> > it

> > > > may decrease the confusion of multiple bottles, brands and

> > dosing.

> > > > Plus it will allow us to move forward with a clinical trial

> once

> > > > funding for the study is secured. Can't do the study without

> the

> > > > study intervention. This is all in early planning stages, so

> stay

> > > > tuned. I will pass on more information as it becomes

available.

> > > This

> > > > is an exciting move in the right direction.

> > > >

> > > > I am also in the middle of writing up the case series of

> > > information

> > > > we have collected on 184 children with apraxia with the plans

> to

> > > > submit it to a pediatric journal. The contribution of

everyone

> on

> > > > this site who provided information on their children, plus

> > > Geng

> > > > and Tina McKenna's efforts have helped to create the largest

> set

> > of

> > > > information on children with verbal apraxia to date. It

seems

> > that

> > > a

> > > > syndrome of allergy, apraxia and malabsorption effects at

least

> a

> > > > subpopulation of these children. 4:1 ratio boys to girls, and

a

> > > > diagnosis of autism spectrum disorder is found in at least

25%

> of

> > > the

> > > > children. Common findings are coordination issues, sensory

> issues

> > > (in

> > > > particular abnormal pain sensation), low tone (particularly

in

> > the

> > > > trunk), and of course verbal and often oral apraxia. Many

kids

> > have

> > > > documented food and environmental allergies and asthma. Gut

> > issues

> > > > are also common. Multiple nutritional deficiencies are also

> > > > identified. Carnitine deficiency is most striking, and gluten

> > > > sensitivity with an elevated antigliadin antibody is found in

> 80%

> > > of

> > > > the kids tested...a much higher frequency than expected in

the

> > > normal

> > > > population. All children tested have carriend the gene (HLA)

> for

> > > > celiac disease/gluten sensitivity. Perhaps this is part of

the

> > > > genetic susceptibility. Needs further study. Zinc

deficiency,

> > fat

> > > > soluble vit deficiencies are also common. 7/9 kids tested

have

> > > > abnormal fecat fat (suggestive of a fat malabsorption

sydrome).

> > And

> > > > the exciting part is that 96% of families who tried vit E +

> omega

> > 3

> > > > saw improvements in speech, possibly also coordination and

> > sensory

> > > > issues. This is very exciting. The first step is to get a

> small

> > > > controlled pilot study done...and the paper published to

> increase

> > > > awareness of this overlooked condition and bring some science

> to

> > a

> > > > benign intervention that so many of us know is working for

our

> > > > children. These children warrant a bigger medical work-up

than

> > what

> > > > is typically provided, and a trial of fish oil and vit E is

> > pretty

> > > > benign, and works for the majority.

> > > >

> > > > ph continues to thrive, and I am thankful every day for

our

> > > good

> > > > fortune. I am still working towards turning our amazing story

> > into

> > > > something that benefits all the other kids out there who have

> his

> > > > syndrome. Seems there are more and more of them every day. -

> >

> > > >

> > >

> >

>