Re: Fox p2 deletion

January 4, 2008

Do not feel delinquent. You had doctors and you could not have known.

Some things are never found for that reason. I think in order to know

if anything will help your first step must be to find out what exactly

typically happens to a kid with this deletion: metabolic issues, etc.?

Then you look at what remedies in the mainstream and alternative arenas

are said to help those symptoms. Check and doubleheck your sources and

document what you see in your own home. Also, if something does not

work at first you can retry later as needed. Fish oil did not work for

us. I reintroduced after I healed the gut and now he responds, at least

sometimes. Best wishes!

Liz

P.S. A metabolic Specialist may be a big help in this regard.

>

> I am new to this group. I have just learned my son has fox p2

> deletion. He has apraxia and some other fine motor issues. Does

> anyone know if the omega-3 therapy or the casiden? free diet works to

> help kids like my son? My son will be 5 in March. I actually feel

> VERY delinquent by not researching things to help my son long before

> now. Any advise would help, especially reccommendations for books.

> Thanks,

>

January 4, 2008

Hi -

Just curious as to how you found out that your son has the Fox P@

deletion???? I thought that you couldn't test for it yet???? I spoke to a

very prominent geneticist who has done major research on this. I have a son

who is five also with apraxia - would really like to speak with you about

this - if you can e-mail me back - DWFrie@... Thanks.

-- [ ] Fox p2 deletion

I am new to this group. I have just learned my son has fox p2

deletion. He has apraxia and some other fine motor issues. Does

anyone know if the omega-3 therapy or the casiden? free diet works to

help kids like my son? My son will be 5 in March. I actually feel

VERY delinquent by not researching things to help my son long before

now. Any advise would help, especially reccommendations for books.

Thanks,

January 4, 2008

there is no way you can feel guilty about not researching the

Foxp2 deletion as the info about it's links to apraxia only were

announced a few short years ago (3-4?!!). What I find amazing is some of the

newest research about how links to avian communication/brains are

linking to possible answers to the human conditions like autism and apraxia as

you will

find in the recent link below as well as an archives from 2004 on below. I have

a parrot named Woodstock who is part of our

family and when we were interviewed on one of the TV shows- Tanner in

a choppy way talked about " sister in cage " which of course we had to

explain (since I never had a daughter -Woodstock is my honorary one -

so she became known by my boys as " Sister " )

When information (like FoxP2 links to apraxia) is just a few years old

it means that we are still learning about it -and it also increases

the possibility that facts today will be myths tomorrow. You can

find much more about FoxP2 in the archives as one of our advisors Dr.

a Tallal met the family that brought the link of FoxP2 and

apraxia to light and that's in the archives too.

Here's a recent article about FoxP2 and apraxia:

Scientists take note of how birds learn to sing

Thursday, Jan 03, 2008 - 12:05 AM Updated: 09:30 AM

By WALTER WITSCHEY

SPECIAL CORRESPONDENT

Singing is an unusual talent. Humans, of course, do it. Birds do it.

Whales, dolphins and bats do it. Otherwise, singing is in short

supply among animals.

Scientists study how birds sing not only to learn about birds, but

also to learn about humans. At Penn State, Professor ay

Kozhevnikov studies bird singing and brain function.

Bird songs are purposeful. They are mostly sung by males to attract

females. They must be properly sung, else, the male will be rejected.

Thus, bad singers tend to father fewer baby birds, and good singers

have more descendents.

Kozhevnikov wants to know just what part of the song is most

attractive. Is it pitch? Is it tempo? His studies show that birds are

amazingly accurate in tempo. They can repeat a note series to an

accuracy of one-thousandth of a second.

Others study how birds learn to sing. It has long been known that

baby birds learn to sing by listening to their fathers. However, what

happens inside their little brains may be a model for how humans

learn to talk and sing.

Professor Fee at Massachusetts Institute of Technology has

found that several brain areas help birds sing. There is a motor

circuit to control singing, and a learning circuit to control

perfecting a song by listening to papa.

Sebastian Haesler at the Max Planck Institute for Molecular Genetics

in Berlin noted that humans with verbal dyspraxia, a speech disorder,

have a mutation of their FOXP2 genes. He lowered the FOXP2 protein in

young finches, before they had learned their finch song.

The results, after two months, were that the finch songs were poorly

learned, with dropped notes and repeated notes that made their songs

all wrong. Thus, the same protein may be required in birds and humans

to activate proper speech development.

Walter R.T. Witschey is professor of anthropology and science

education at Longwood University.

http://www.inrich.com/content/cva/ric/living.apx.-content-articles-RTD-2008-01-0\

3-0046.html

~~~~~~~~~~~~~~~a few archives from 2004 and 2005

/message/40955

Tue Jun 21, 2005 11:02 pm

FoxP2 -apraxia, speech, language, autism or bird gene?

FoxP2 was first discovered in a family with severe apraxia. So

severe they were unintelligible to outsiders I've heard from those

PhDs that met with them:

" One of the most famous of these is the FoxP2, identified in a study

of a large kindred with the disorder of apraxia of speech and

language impairment (Varda-Kahdem et al., 1995). This accomplishment

was presaged by a number of studies that suggested a possible

genetic basis for a variety of communicative disorders, including

specific language impairment, stuttering, and phonological disorder. "

http://www.rle.mit.edu/soundtosense/conference/pdfs/invitedspeakers/Kent%20PAPER\

\

..pdf

Our very own Speechville was even hyperlinked from some articles

like the one below on perhaps why birds (like who I just posted

about recently) can perhaps answer some questions to help our

children with speech impairments since they too share the FoxP2 gene.

http://www.sciencentral.com/articles/view.php3?article_id=218392400 & cat=1_2

Even though many of 'today's' autistic children have underlying and

in many cases still undiagnosed speech impairments -classic autism

isn't a speech impairment

Yet... some researchers today call the FoxP2 gene the " autism

gene " (?)

Link between Foxp2 gene and language development

A study, led by researchers at Mount Sinai School of Medicine, found

that the Foxp2 gene plays an essential role in the development of

social communication.

The association between Foxp2 and language was first identified in a

family in which half the members had severe speech and grammar

impairments.

Studies showed that all the affected family members had a mutation

in the Foxp2 gene. The gene is found on a region of chromosome 7

that is linked to other disorders that affect speech, including

autism and specific language impairment ( a broad diagnosis used to

describe communication difficulties in the absence of mental

retardation, hearing loss, or emotional disorders ).

In the study, the team engineered mice with either one or both

disrupted copies of Foxp2 in order to examine the role of this gene

in social communication. These are the first mice to be engineered

with this particular genetic defect.

Disruption of Foxp2 affected the ability of infant rodents to emit

ultrasonic vocalizations ( USVs ) when separated from their mother

and littermates, according to the study leader, ph Buxbaum, at

Mount Sinai.

Mice with two disrupted copies of Foxp2 had a complete absence of

USVs, while mice with one disrupted gene emitted USVs at a

significantly reduced rate.

Mice with two disrupted copies of the gene also displayed severe

motor skill impairment and premature death, while single-copy mice

had more modest, but still noticeable, developmental delays.

" Our findings demonstrate that Foxp2 subsumes communication across

species, and, as a result, we can legitimately use the mouse to

learn about the neurobiology of human speech and articulation, " says

Buxbaum.

While Foxp2 disruption affected USVs, it did not appear to influence

the structure and neural control of the vocal tract. Instead,

further studies on the Foxp2 mice suggest that interference with

Foxp2 affects the migration and/or the maturation of neurons in the

development of the cerebellum ( the part of the brain responsible

for the coordination of complex voluntary muscular movement, as well

as the maintenance of posture and balance ).

" It has been hypothesized that speech is somehow a finer example of

a motor pathway -- a more demanding, more subtle pathway, but still

a motor pathway, " says Buxbaum. " Our animal model provides a way of

addressing this issue and, in fact, supports this hypothesis. "

The Foxp2 mice may also allow researchers to investigate how this

gene is related to autism.

A few studies suggest that Foxp2 is an autism-susceptibility gene,

although a majority view is that Foxp2 is not such a gene.

However, Foxp2 is a transcription factor, something that regulates

the expression of other genes. " The Foxp2 mouse can now be used to

determine which genes are abnormally expressed in the cerebellum in

these animals, " says Buxbaum. " Those genes might be legitimate

autism-susceptibility genes. "

Source: The Mount Sinai Hospital, 2005

XagenaMedicine2005

http://www.xagena.it/news/medicinenews_net_news/876f1f9954de0aa402d91bb988d12cd4\

\

..html

In the link above -the FoxP2 is linked to avian research. The Human

Nature of Birds tells how birds share human intelligence, emotions

and personalities closer to man then just about any other species.

http://www.africanature.com/Orig%20Africa%20Nature/African%20Birds/humannature.h\

\

tm

I know that from my own parrot Woodstock that I've had for twenty

years now.

My parrot Woodstock is not apraxic and shows no signs of having a

speech impairment -she talks and sings and even makes up words and

songs appropriately and can repeat phrases on command or on her

own. She shows no signs of autism either -she just loves to play

with any toy even though she gets a bit scared of new really large

ones at first, loves to interact, especially with women and children

(she never bites children -rarely bites women -and bites almost all

men including my husband who she loved while we dated -but hated

since we've been married) and give hugs and kisses when she's a

happy girl. She does flap however.

Who knows -Perhaps FoxP2 and even birds can help with autism too

http://www.peppertalk.org/

http://www.parrotsupercenter.com/Information.asp?InformationID=223

Just please don't forget the true silent majority, those late

talkers without autism -just because they don't have the funding for

research. Help bring all children a smile and a voice.

=====

January 4, 2008

Forgot to mention this but based on emails that came in...There is no

way of knowing if all of the children in this group have a FoxP2

deletion unless we all had testing done -but it's clear from this

group of thousands of clearly affected motor planning of speech and in some

cases of the body as well as co existing hypotonia/sensory issues (so

it's not just speech) that almost all that children in this group

have been helped in all areas with fish oil and now with vitamin E as

well as of course appropriate therapies. I read about the diets for

FoxP2 deletion recommendation.... Again if you check the archives or

email any of the parents that used to post all the time who's

children (like mine) are doing great today -most did not have to put

their children on special diets...only those that fish oils didn't

work for in most cases. The strong focus on diets is fairly recent

and I know as a parent that if I read it would work back when Tanner

was small I probably would have tried it too -but back then we all

met in person and those that tried it again -most it didn't work

for. But if you go through the work of doing a special diet (which

again I had to be on growing up that saved my life as I was diagnosed

as a celiac baby and spent years in and out of hospitals until they

figured it out but I HATED that diet) please don't forget to also add

the fish oil! (and vitamin E)

=====

January 4, 2008

,

I just looked up Fox p2 deletion since I had no idea what it was. The brief

item that I just read indicated that this could be particular to verbal apraxia.

Is that so? It is a deletion on the fathers side.

I am going to say this.... my boy may have this too! He has never been tested

genetically so I have no idea whether he has this or not. You know, if you are

going to test further, I would look into metabolic profiles since they capture

the child's systems at a particular point in time and indicate which nutrients

he is deficient in and processes are not working well. This may or may not be

because of the gene expression.

I would bet that the casien free diet would help your son. I would bet that

supplementing would help your son. But I may be wrong! The thing is, these

items which have helped many of our kids so much would do no harm to your child.

You could try them and no harm would result. If your son is a responder, then

the benefits are tremendous.

Please don't feel delinquent. I didn't start researching in earnest until my

son was 11 and though I wish I had done it sooner, I did the best I could with

the information that I had at the time. Yet, we are getting results now. Since

my son is older, his therapy needs are much higher in the OT stuff.

Some basic questions:

Does your son have any low muscle tone issues or is it limited to verbal

apraxia? How is his speech therapy going? Is he making progress?

Does he have dry skin, white marks on his nails, straight hair and is he often

thirsty? These are some signs of fatty acid deficiency.

How are his fine motor, gross motor skills?

I take my son to Nacd where they design a home therapy program for him. These

people work with many kids who have gene expressions of a wide variety of types

ie. down syndrome, fragile X, Anglemans syndrome.... you name it, they work with

it! But the thing that I have noticed is that all of the kids, despite their

genomics are approached by the same method. Ability.... processing, oral-motor

expertise, expressive & receptive language processing, fine & gross motor

ability so.....

while it is helpful to know about your sons genomics, don't let it stop you from

trying out many of the interventions that are out there and investigating all of

the possible things that may help and work for him.

Welcome to the group.

Janice

Mother of Mark, 13

[sPAM][ ] Fox p2 deletion

I am new to this group. I have just learned my son has fox p2

deletion. He has apraxia and some other fine motor issues. Does

anyone know if the omega-3 therapy or the casiden? free diet works to

help kids like my son? My son will be 5 in March. I actually feel

VERY delinquent by not researching things to help my son long before

now. Any advise would help, especially reccommendations for books.

Thanks,

January 4, 2008

If you can tolerate the fish oil and don't have lemon allergy (like

us) or have bleeding from E. The bleeding thing you can test for to

know the safety of E (which I love for me but we cannot yet resume in

my son until we work out the bleeding issue) in your kid. Getting the

right E is great too. The folders have the coagulation tests listed.

I hate the diet too but it is needed in our house. Just the way it

is. Never did I think in a million years my daughter, the celiac,

would request red pepper as her snack to take to Disney on Ice as she

did last night. Miraculous!

>

> Forgot to mention this but based on emails that came in...There is

no

> way of knowing if all of the children in this group have a FoxP2

> deletion unless we all had testing done -but it's clear from this

> group of thousands of clearly affected motor planning of speech and

in some

> cases of the body as well as co existing hypotonia/sensory issues

(so

> it's not just speech) that almost all that children in this group

> have been helped in all areas with fish oil and now with vitamin E

as

> well as of course appropriate therapies. I read about the diets for

> FoxP2 deletion recommendation.... Again if you check the archives or

> email any of the parents that used to post all the time who's

> children (like mine) are doing great today -most did not have to put

> their children on special diets...only those that fish oils didn't

> work for in most cases. The strong focus on diets is fairly recent

> and I know as a parent that if I read it would work back when Tanner

> was small I probably would have tried it too -but back then we all

> met in person and those that tried it again -most it didn't work

> for. But if you go through the work of doing a special diet (which

> again I had to be on growing up that saved my life as I was

diagnosed

> as a celiac baby and spent years in and out of hospitals until they

> figured it out but I HATED that diet) please don't forget to also

add

> the fish oil! (and vitamin E)

>

> =====

>

January 4, 2008

Is there a specific gene affected. I have results already but must

review in person with the geneticist in Feb and want to ask about

this.

>

> Hi -

>

> Just curious as to how you found out that your son has the Fox P@

> deletion???? I thought that you couldn't test for it yet???? I

spoke to a

> very prominent geneticist who has done major research on this. I

have a son

> who is five also with apraxia - would really like to speak with you

about

> this - if you can e-mail me back - DWFrie@... Thanks.

>

> -- [ ] Fox p2 deletion

>

> I am new to this group. I have just learned my son has fox p2

> deletion. He has apraxia and some other fine motor issues. Does

> anyone know if the omega-3 therapy or the casiden? free diet works

to

> help kids like my son? My son will be 5 in March. I actually feel

> VERY delinquent by not researching things to help my son long

before

> now. Any advise would help, especially reccommendations for books.

> Thanks,

>

January 4, 2008

Interesting about the Fathers side. Hubby has speech stuff on his

side whereas the gut stuff is on my side. Hmmm

>

> ,

>

> I just looked up Fox p2 deletion since I had no idea what it was.

The brief item that I just read indicated that this could be

particular to verbal apraxia. Is that so? It is a deletion on the

fathers side.

>

> I am going to say this.... my boy may have this too! He has never

been tested genetically so I have no idea whether he has this or

not. You know, if you are going to test further, I would look into

metabolic profiles since they capture the child's systems at a

particular point in time and indicate which nutrients he is deficient

in and processes are not working well. This may or may not be

because of the gene expression.

>

> I would bet that the casien free diet would help your son. I would

bet that supplementing would help your son. But I may be wrong! The

thing is, these items which have helped many of our kids so much

would do no harm to your child. You could try them and no harm would

result. If your son is a responder, then the benefits are tremendous.

>

> Please don't feel delinquent. I didn't start researching in

earnest until my son was 11 and though I wish I had done it sooner, I

did the best I could with the information that I had at the time.

Yet, we are getting results now. Since my son is older, his therapy

needs are much higher in the OT stuff.

>

> Some basic questions:

>

> Does your son have any low muscle tone issues or is it limited to

verbal apraxia? How is his speech therapy going? Is he making

progress?

> Does he have dry skin, white marks on his nails, straight hair and

is he often thirsty? These are some signs of fatty acid deficiency.

> How are his fine motor, gross motor skills?

>

> I take my son to Nacd where they design a home therapy program for

him. These people work with many kids who have gene expressions of a

wide variety of types ie. down syndrome, fragile X, Anglemans

syndrome.... you name it, they work with it! But the thing that I

have noticed is that all of the kids, despite their genomics are

approached by the same method. Ability.... processing, oral-motor

expertise, expressive & receptive language processing, fine & gross

motor ability so.....

>

> while it is helpful to know about your sons genomics, don't let it

stop you from trying out many of the interventions that are out there

and investigating all of the possible things that may help and work

for him.

>

> Welcome to the group.

>

> Janice

> Mother of Mark, 13

>

> [sPAM][ ] Fox p2 deletion

>

> I am new to this group. I have just learned my son has fox p2

> deletion. He has apraxia and some other fine motor issues. Does

> anyone know if the omega-3 therapy or the casiden? free diet

works to

> help kids like my son? My son will be 5 in March. I actually feel

> VERY delinquent by not researching things to help my son long

before

> now. Any advise would help, especially reccommendations for books.

> Thanks,

>

January 4, 2008

Yes he has been diagnosed with verbal apraxia, developmental aphasia,

and developmental coordination disorder.

He is taking 4 Omega 3-6-9 pills a day and 2 carn-aware as well as a

round of florastor(probotic). He's been on them for about 2-3 weeks

now. I haven't seen much of an improvement, yet. But I have noticed

he is trying to talk more. His base sounds are so limited it would

be impossible for him to speak more than a few words.

We just started going to a natropath who is testing him for metobolic

problems in the blood and urine, so we will see what happens. He did

have dry patches on his skin that seem to have gone away since

starting the suppiments. And no speach therapy has not helped him

much at all.

Not to sound too corney, but I know there is an answer to help him

talk. I just have to look. Traditional medicine has offered no

help, so now I look other places. I am stubborn and I know I can

find him some help. I am sorry to go on and on, but I am excited to

actually have a new place to look for things to try. The funny part

about the whole healing the " gut " part of group fasinates me. My

father and brother have Chrone's disease and ulcerative cholitus. I

wonder if this is related to some sort of food reaction that runs in

my family. The genetic problem just my add to that issue too. Well

thanks for the info and encoragement. I am hoping and praying this

is the path I will find the answer on.

>

> ,

>

> I just looked up Fox p2 deletion since I had no idea what it was.

The brief item that I just read indicated that this could be

particular to verbal apraxia. Is that so? It is a deletion on the

fathers side.

>

> I am going to say this.... my boy may have this too! He has never

been tested genetically so I have no idea whether he has this or

not. You know, if you are going to test further, I would look into

metabolic profiles since they capture the child's systems at a

particular point in time and indicate which nutrients he is deficient

in and processes are not working well. This may or may not be

because of the gene expression.

>

> I would bet that the casien free diet would help your son. I would

bet that supplementing would help your son. But I may be wrong! The

thing is, these items which have helped many of our kids so much

would do no harm to your child. You could try them and no harm would

result. If your son is a responder, then the benefits are tremendous.

>

> Please don't feel delinquent. I didn't start researching in

earnest until my son was 11 and though I wish I had done it sooner, I

did the best I could with the information that I had at the time.

Yet, we are getting results now. Since my son is older, his therapy

needs are much higher in the OT stuff.

>

> Some basic questions:

>

> Does your son have any low muscle tone issues or is it limited to

verbal apraxia? How is his speech therapy going? Is he making

progress?

> Does he have dry skin, white marks on his nails, straight hair and

is he often thirsty? These are some signs of fatty acid deficiency.

> How are his fine motor, gross motor skills?

>

> I take my son to Nacd where they design a home therapy program for

him. These people work with many kids who have gene expressions of a

wide variety of types ie. down syndrome, fragile X, Anglemans

syndrome.... you name it, they work with it! But the thing that I

have noticed is that all of the kids, despite their genomics are

approached by the same method. Ability.... processing, oral-motor

expertise, expressive & receptive language processing, fine & gross

motor ability so.....

>

> while it is helpful to know about your sons genomics, don't let it

stop you from trying out many of the interventions that are out there

and investigating all of the possible things that may help and work

for him.

>

> Welcome to the group.

>

> Janice

> Mother of Mark, 13

>

> [sPAM][ ] Fox p2 deletion

>

> I am new to this group. I have just learned my son has fox p2

> deletion. He has apraxia and some other fine motor issues. Does

> anyone know if the omega-3 therapy or the casiden? free diet

works to

> help kids like my son? My son will be 5 in March. I actually feel

> VERY delinquent by not researching things to help my son long

before

> now. Any advise would help, especially reccommendations for books.

> Thanks,

>

January 4, 2008

Per our GI milk allergy and chronhs can be related. Celiac daughter

had signs of ulcerative colitis and since both my husband and I come

from big dairy families (MIL grew up on dairy farm, both my

grandfathers were milkmen)it may just be satuaration leading to

mutation.

> >

> > ,

> >

> > I just looked up Fox p2 deletion since I had no idea what it

was.

> The brief item that I just read indicated that this could be

> particular to verbal apraxia. Is that so? It is a deletion on the

> fathers side.

> >

> > I am going to say this.... my boy may have this too! He has

never

> been tested genetically so I have no idea whether he has this or

> not. You know, if you are going to test further, I would look into

> metabolic profiles since they capture the child's systems at a

> particular point in time and indicate which nutrients he is

deficient

> in and processes are not working well. This may or may not be

> because of the gene expression.

> >

> > I would bet that the casien free diet would help your son. I

would

> bet that supplementing would help your son. But I may be wrong!

The

> thing is, these items which have helped many of our kids so much

> would do no harm to your child. You could try them and no harm

would

> result. If your son is a responder, then the benefits are

tremendous.

> >

> > Please don't feel delinquent. I didn't start researching in

> earnest until my son was 11 and though I wish I had done it sooner,

I

> did the best I could with the information that I had at the time.

> Yet, we are getting results now. Since my son is older, his

therapy

> needs are much higher in the OT stuff.

> >

> > Some basic questions:

> >

> > Does your son have any low muscle tone issues or is it limited to

> verbal apraxia? How is his speech therapy going? Is he making

> progress?

> > Does he have dry skin, white marks on his nails, straight hair

and

> is he often thirsty? These are some signs of fatty acid deficiency.

> > How are his fine motor, gross motor skills?

> >

> > I take my son to Nacd where they design a home therapy program

for

> him. These people work with many kids who have gene expressions of

a

> wide variety of types ie. down syndrome, fragile X, Anglemans

> syndrome.... you name it, they work with it! But the thing that I

> have noticed is that all of the kids, despite their genomics are

> approached by the same method. Ability.... processing, oral-motor

> expertise, expressive & receptive language processing, fine & gross

> motor ability so.....

> >

> > while it is helpful to know about your sons genomics, don't let

it

> stop you from trying out many of the interventions that are out

there

> and investigating all of the possible things that may help and work

> for him.

> >

> > Welcome to the group.

> >

> > Janice

> > Mother of Mark, 13

> >

> > [sPAM][ ] Fox p2 deletion

> >

> > I am new to this group. I have just learned my son has fox p2

> > deletion. He has apraxia and some other fine motor issues. Does

> > anyone know if the omega-3 therapy or the casiden? free diet

> works to

> > help kids like my son? My son will be 5 in March. I actually

feel

> > VERY delinquent by not researching things to help my son long

> before

> > now. Any advise would help, especially reccommendations for

books.

> > Thanks,

> >

January 4, 2008

Janice,

I think of Mark daily and how you saved him. I am headed to NACD

shortly and two more families in my town are as well...all thanks to

you. My OT loves the idea as well. I can never thank you enough!

L

> >

> > ,

> >

> > I just looked up Fox p2 deletion since I had no idea what it

was.

> The brief item that I just read indicated that this could be

> particular to verbal apraxia. Is that so? It is a deletion on the

> fathers side.

> >

> > I am going to say this.... my boy may have this too! He has

never

> been tested genetically so I have no idea whether he has this or

> not. You know, if you are going to test further, I would look

into

> metabolic profiles since they capture the child's systems at a

> particular point in time and indicate which nutrients he is

deficient

> in and processes are not working well. This may or may not be

> because of the gene expression.

> >

> > I would bet that the casien free diet would help your son. I

would

> bet that supplementing would help your son. But I may be wrong!

The

> thing is, these items which have helped many of our kids so much

> would do no harm to your child. You could try them and no harm

would

> result. If your son is a responder, then the benefits are

tremendous.

> >

> > Please don't feel delinquent. I didn't start researching in

> earnest until my son was 11 and though I wish I had done it

sooner, I

> did the best I could with the information that I had at the time.

> Yet, we are getting results now. Since my son is older, his

therapy

> needs are much higher in the OT stuff.

> >

> > Some basic questions:

> >

> > Does your son have any low muscle tone issues or is it limited

to

> verbal apraxia? How is his speech therapy going? Is he making

> progress?

> > Does he have dry skin, white marks on his nails, straight hair

and

> is he often thirsty? These are some signs of fatty acid

deficiency.

> > How are his fine motor, gross motor skills?

> >

> > I take my son to Nacd where they design a home therapy program

for

> him. These people work with many kids who have gene expressions

of a

> wide variety of types ie. down syndrome, fragile X, Anglemans

> syndrome.... you name it, they work with it! But the thing that I

> have noticed is that all of the kids, despite their genomics are

> approached by the same method. Ability.... processing, oral-motor

> expertise, expressive & receptive language processing, fine &

gross

> motor ability so.....

> >

> > while it is helpful to know about your sons genomics, don't let

it

> stop you from trying out many of the interventions that are out

there

> and investigating all of the possible things that may help and

work

> for him.

> >

> > Welcome to the group.

> >

> > Janice

> > Mother of Mark, 13

> >

> > [sPAM][ ] Fox p2 deletion

> >

> > I am new to this group. I have just learned my son has fox p2

> > deletion. He has apraxia and some other fine motor issues. Does

> > anyone know if the omega-3 therapy or the casiden? free diet

> works to

> > help kids like my son? My son will be 5 in March. I actually

feel

> > VERY delinquent by not researching things to help my son long

> before

> > now. Any advise would help, especially reccommendations for

books.

> > Thanks,

> >

January 4, 2008

,

While Mark was not a responder to fish oils like many of the other kids here.

Tests revealed that he was extremely EFA deficient. We worked on his gut issues

and then he began to absorb the oils.

Still, for my Mark who is older, the EFA's seem to affect his energy levels and

not necessarily his performance. Per the book, " The LCP Sollution " , it can take

as long as 4 months of intensive supplementation to get the fatty acid stores up

to normal levels if a child is deficient. So, he hasn't been quite the same as

the real fish oil 'responders' but I know he is deficient and that this is a

common issue amongst our kids and also kids with ADHD.... so I supplement,

supplement and supplement some more.

Our metabolic panel revealed extremely low glutathione, vitamin A, all of the

Omega 6 & 9, low carnitine, low sulfates, high mercury, lead and arsenic plus

high trans fats. We also had high serum D levels. I go back to the doctor on

Tuesday for results of iron panels, thryroid testing and our heavy metal

challenge.

But... in addition to getting/finding the right doctor to help your child, you

also need the right therapy program that specifically target different areas.

Things that have helped our kids therapy-wise include The Listening Program (or

tomatis, berrard, etc.) and many moms on this board have had great results with

PROMPT therapy. (I have never tried this but the moms who have seem very, very

pleased).

We go to NACD for a specifically designed home therapy program and they have

done wonderful things for Mark who also has the diagnosis of Developmental

Coordination Disorder as well as verbal dyspraxia, & dysarthria. It took me eons

to discover that DCD = global dyspraxia! We started going when he was 11 and

WOW, have they ever changed his life and his future. The website is

http://www.nacd.org Now, a few of the moms on this board have begun taking

their kids and I believe that most are pretty happy (though probably exhausted)

with the home therapy programs they design. Check out the introductory videos

on their site to get an idea how they work.

http://www.nacd.org/tour/videosection.html

Note that NACD is all non-profit.

Our kids suffer from a wide variety of issues: vision, auditory, tactilty,

general coordination, fine motor issues, health, speech. I would never have

been able to afford all of the different types of therapy that Mark needed.

Actually, before NACD, I didn't even realize half of the issues that he was

having such as auditory processing. NACD teaches me how to perform therapy

daily at home. After 9 years of useless system therapy, this has been the only

thing to really work for him and help him become a 'normal' kid with an

'unlimited' future. I cannot praise these people enough for what they have done

for my boy. They have amazing success with dyspraxic kids. The Mark I have

today versus the Mark I had when I started NACD program.... the difference is

amazing! He is the same boy but he is also a new boy.... he life has made a

complete 180 degree turn around.

Janice

Mother of Mark, 13

[sPAM][ ] Fox p2 deletion

>

> I am new to this group. I have just learned my son has fox p2

> deletion. He has apraxia and some other fine motor issues. Does

> anyone know if the omega-3 therapy or the casiden? free diet

works to

> help kids like my son? My son will be 5 in March. I actually feel

> VERY delinquent by not researching things to help my son long

before

> now. Any advise would help, especially reccommendations for books.

> Thanks,

>

January 4, 2008

From what I know about this from talking to a very prominent researcher in

the field, the fox P2 deletion is very uncommon. Children have severe

language delays and he mentioned something about the inability to sneeze.

> [sPAM][ ] Fox p2 deletion

>

> I am new to this group. I have just learned my son has fox p2

> deletion. He has apraxia and some other fine motor issues. Does

> anyone know if the omega-3 therapy or the casiden? free diet

works to

> help kids like my son? My son will be 5 in March. I actually feel

> VERY delinquent by not researching things to help my son long

before

> now. Any advise would help, especially reccommendations for books.

> Thanks,

>

January 4, 2008

keep us posted!

[ ] Fox p2 deletion

>

> I am new to this group. I have just learned my son has fox p2

> deletion. He has apraxia and some other fine motor issues. Does

> anyone know if the omega-3 therapy or the casiden? free diet works

to

> help kids like my son? My son will be 5 in March. I actually feel

> VERY delinquent by not researching things to help my son long

before

> now. Any advise would help, especially reccommendations for books.

> Thanks,

>

January 4, 2008

How do you diagnosis Fox P2? Through blood work and gene study I am

assuming? Is there a specific test for it?

Tx

Hetal

>

> From what I know about this from talking to a very prominent

researcher in

> the field, the fox P2 deletion is very uncommon. Children have

severe

> language delays and he mentioned something about the inability to

sneeze.

> > [sPAM][ ] Fox p2 deletion

> >

> > I am new to this group. I have just learned my son has fox p2

> > deletion. He has apraxia and some other fine motor issues. Does

> > anyone know if the omega-3 therapy or the casiden? free diet

> works to

> > help kids like my son? My son will be 5 in March. I actually feel

> > VERY delinquent by not researching things to help my son long

> before

> > now. Any advise would help, especially reccommendations for

books.

> > Thanks,

> >

>

January 4, 2008

I doubt it's been studied enough to know a FoxP2 deletion is rare.

Nobody even knows how many children have apraxia but anyone who has a

child school age with apraxia knows it's a higher number than

autism. Or check out Dr. Geier's report

http://www.cherab.org/information/geiermd.html

The word rare means nothing to me. Just 8 years ago when Tanner was

diagnosed with apraxia I was told it's very rare and we know that's

not at all true -and also 8 years ago SLPs from ASHA didn't even

believe it to be a diagnosis which came up as an argument at one of

our meetings by some of the professionals there! Here's a great

quote used by one of the ASHA SLPs back then " Apraxia is a diagnosis

used to get parents to pay for tons of speech therapy that the child

doesn't need "

So again the FoxP2 deletion aspect is too new to know what's normal

or not normal -rare or not -and quite honestly very few children in

this group go through genetic testing. Most put their child in

therapy and on fish oils and they do well with those two things alone

as it states in The Late Talker (and yes I know that there are those

that are very active today in this group who do diets and all but

that's all recent stuff) Today we know that vitamin E is also most

important. As I say in the archives over and over and as you will

find to be true -once the child is doing " well " the parents that post

how well their child is doing -those are some of the last messagtes

from that parent in many cases. Most don't even stick around here no

less post often which is sad for new parents here today -and for that

child who's parent left. We are all still learning here and it's

best to keep learning. And I grew up with a rare diagnosis. When I

was a baby celiac was considered very rare. When I was a teen and in

my twenties celiac was a word never used by anyone. I once dated an

MD who just wanted to talk to me about celiac because he learned

about it in medical school and " had never met anyone who had celiac "

and " how exciting " it was to meet me! (OK) and now in the past year

many talk about it. The funny part is that when I was tested more

recently for celiac I didn't test positive -so who knows why I was

diagnosed with it back when -but whatever it was I had it almost

killed me and again special diets that were for celiac saved me -but

I wouldn't put my own children on any special diet unless they needed

to be on one like I needed it because I know what it's like to grow

up on a special diet and it's hard. It's good that there is research

for FoxP2 -but most will probably be done under autism even though

it's been dubbed the " apraxia gene " since the money is in autism

still and not yet in apraxia.

Here's a very informative study on Foxp2 from The American Society of

Human Genetics 2006

http://www.pubmedcentral.nih.gov/articlerender.fcgi?

& pubmedid=17033973

(info about sneezing from this

" Problems with coughing, throat clearing, and sneezing are observed

in most patients, and some are unable to blow their noses. Oromotor

problems include difficulties with lip protrusion, tongue elevation

and lateralization, and rapid alternating movements " ) Don't know

about the trouble sneezing part...I would suspect it's actions on

command which is what is typical for all with apraxia - sneezing you

kind of just do -but the blowing the nose part is an on command

action and a well documented in the archives here!

And for more interesting bird info on FoxP2: (doesn't anyone else

find this interesting?!!)

Q: Are you one of the researchers studying the FoxP2 gene? If so, do

you think studies of this gene will one day soon help my four-year-

old cousin, who has verbal appraxia? Are there any birds that suffer

these kinds of speech disorders?

Anonymous

A: Dear Anonymous,

Yes, I am one of the researchers that studied the FoxP2 gene. My

colleagues and I published a paper in the Journal of Neuroscience in

2004. We found that FoxP2 is up-regulated in the songbird basal

ganglia vocal nucleus (called AreaX) at times when vocal learning

occurs and is down-regulated to basal levels when vocal learning is

complete. It will be a long while before we can perform gene

manipulations in humans to control FoxP2 and other genes associated

with language functions. Thus, we cannot help your four-year-old

cousin now with such an approach. He or she will have to be treated

by other means. I do not know of any birds with song appraxias. Then

again, I do not think it has been searched for. Keep searching for

information for your cousin.

http://www.pbs.org/wgbh/nova/sciencenow/3214/03-ask.html

(BTW -birds do sneeze when they are sick and it sounds just like a

people sneeze)

=====

January 4, 2008

Celiac is not rare, just rarely recognized in the U.S. Celiac can be

active or inactive thus one can have it and test negative. The best

book I have found on celiac is by Greene, MD, the top adult

celiac doc in the U.S. He is from Australia, where they have GFCF

menus in the fast food joints and where celiac is both common and

commonly diagnosed and addressed properly.

>

> I doubt it's been studied enough to know a FoxP2 deletion is rare.

> Nobody even knows how many children have apraxia but anyone who has

a

> child school age with apraxia knows it's a higher number than

> autism. Or check out Dr. Geier's report

> http://www.cherab.org/information/geiermd.html

>

> The word rare means nothing to me. Just 8 years ago when Tanner

was

> diagnosed with apraxia I was told it's very rare and we know that's

> not at all true -and also 8 years ago SLPs from ASHA didn't even

> believe it to be a diagnosis which came up as an argument at one of

> our meetings by some of the professionals there! Here's a great

> quote used by one of the ASHA SLPs back then " Apraxia is a

diagnosis

> used to get parents to pay for tons of speech therapy that the

child

> doesn't need "

>

> So again the FoxP2 deletion aspect is too new to know what's normal

> or not normal -rare or not -and quite honestly very few children in

> this group go through genetic testing. Most put their child in

> therapy and on fish oils and they do well with those two things

alone

> as it states in The Late Talker (and yes I know that there are

those

> that are very active today in this group who do diets and all but

> that's all recent stuff) Today we know that vitamin E is also most

> important. As I say in the archives over and over and as you will

> find to be true -once the child is doing " well " the parents that

post

> how well their child is doing -those are some of the last messagtes

> from that parent in many cases. Most don't even stick around here

no

> less post often which is sad for new parents here today -and for

that

> child who's parent left. We are all still learning here and it's

> best to keep learning. And I grew up with a rare diagnosis. When

I

> was a baby celiac was considered very rare. When I was a teen and

in

> my twenties celiac was a word never used by anyone. I once dated

an

> MD who just wanted to talk to me about celiac because he learned

> about it in medical school and " had never met anyone who had

celiac "

> and " how exciting " it was to meet me! (OK) and now in the past

year

> many talk about it. The funny part is that when I was tested more

> recently for celiac I didn't test positive -so who knows why I was

> diagnosed with it back when -but whatever it was I had it almost

> killed me and again special diets that were for celiac saved me -

but

> I wouldn't put my own children on any special diet unless they

needed

> to be on one like I needed it because I know what it's like to grow

> up on a special diet and it's hard. It's good that there is

research

> for FoxP2 -but most will probably be done under autism even though

> it's been dubbed the " apraxia gene " since the money is in autism

> still and not yet in apraxia.

>

> Here's a very informative study on Foxp2 from The American Society

of

> Human Genetics 2006

> http://www.pubmedcentral.nih.gov/articlerender.fcgi?

> & pubmedid=17033973

>

> (info about sneezing from this

> " Problems with coughing, throat clearing, and sneezing are observed

> in most patients, and some are unable to blow their noses. Oromotor

> problems include difficulties with lip protrusion, tongue elevation

> and lateralization, and rapid alternating movements " ) Don't know

> about the trouble sneezing part...I would suspect it's actions on

> command which is what is typical for all with apraxia - sneezing

you

> kind of just do -but the blowing the nose part is an on command

> action and a well documented in the archives here!

>

> And for more interesting bird info on FoxP2: (doesn't anyone else

> find this interesting?!!)

>

> Q: Are you one of the researchers studying the FoxP2 gene? If so,

do

> you think studies of this gene will one day soon help my four-year-

> old cousin, who has verbal appraxia? Are there any birds that

suffer

> these kinds of speech disorders?

> Anonymous

>

> A: Dear Anonymous,

>

> Yes, I am one of the researchers that studied the FoxP2 gene. My

> colleagues and I published a paper in the Journal of Neuroscience

in

> 2004. We found that FoxP2 is up-regulated in the songbird basal

> ganglia vocal nucleus (called AreaX) at times when vocal learning

> occurs and is down-regulated to basal levels when vocal learning is

> complete. It will be a long while before we can perform gene

> manipulations in humans to control FoxP2 and other genes associated

> with language functions. Thus, we cannot help your four-year-old

> cousin now with such an approach. He or she will have to be treated

> by other means. I do not know of any birds with song appraxias.

Then

> again, I do not think it has been searched for. Keep searching for

> information for your cousin.

> http://www.pbs.org/wgbh/nova/sciencenow/3214/03-ask.html

>

> (BTW -birds do sneeze when they are sick and it sounds just like a

> people sneeze)

>

> =====

>

January 5, 2008

To those who asked what type of test diagnosed it. It a blood test.

I am finiding the information about the foxp2 deletion very

interesting also. I suspect it is a much more common problem than

people know about. I also agree with you very little research is

being done on this because there is no money in it. Its pretty sad,

but I guess there is only so much money to go around. I will keep

the group posted on any new information or developments. We are

still waiting for a few tests to come back. They take forever. He

had the blood drawn back in august.