Re: We're at the beginning of our journey and needing some advice

[Guest guest]

Email me offline and I'll give you our story. One thing screams out

at me: your son and that direction thing is not stubborness. He knows

he is supposed to look for something but is not processing what it

is. I will get beat up on this and I don't care: try a 2 week milk

elimination. Also, consider nacd.org and the listening program (your

EI should have someone trained in it to get you started for free so

you know if it is part of this thing. All the therapy in the world

can't be effective if his hearing is cutting in and out. It will help

him but not to reach his full potential.

I do not know your child or what comprises his " disorder " as the doc

called it but do not be paralyzed. Take action and doi it early and

the future is bright.

>

> Most of you moms (and dads) probably don't remember us. We've only

> posted once or twice back in July/August when we were just

beginning

> our EI journey. My son, , is almost 27 months old now and is

> receiving speech/OT services once/week and and OT with an EI

> preschool teacher once/week. At 19-20 months he wasn't using any

> words to communicate his needs, but would repeat 3-4 words when

> asked. He wasn't making much eye contact and would just point and

> grunt when he wanted something. Many of you very nice ladies on

this

> board encouraged me to call EI and have him evaluated now, rather

> than wait until his second birthday. Thank you for that

advice!!!!

>

> I set up an appointment and had him evaluated by an audiologist,

> speech therapist, and psychologist. They told us he clearly

> qualifies for special education services. I'm not sure I agree,

but

> they said he might have a cognitive delay as well as an obvious

> speech delay. At the time, he wasn't following simple one-step

> commands or requests. For example, if I asked him to go get his

> shoes, he would just look around and/or ignore me. I'm not sure if

> there truly is a cognitive delay or if he was just being stubborn.

> (He has proven that he is stubborn in the past) In my mind though,

> it didn't matter because having a cognitive delay would mean he

> qualified for another hour of service/week. The more help

available,

> the better… right? At that age, it's so hard to know what

> is " normal " development and what they " should " be doing. Back

then,

> I suspected he might have mild autism, but after having him

evaluated

> by a pediatric neurologist, I learned that most of his tendencies

> were most likely the result of his frustration with not being

> understood and his limited ability to communicate. The neurologist

> said he had a developmental speech disorder and that I should just

> continue with the speech/OT. I left his office thinking " great

> news! will catch up. " However, then I started wondering

about

> the word " disorder. " Isn't that a lifelong condition? Could he

have

> given me a diagnosis for apraxia? Would he have recommended an SLP

> if there was cause for concern?

>

> I think the EI services are really helping him. By mid-October, he

> began using about 6-8 signs to communicate needs and once in a

while

> would put two of them together. Lately, he has been saying more

> words, calling me " a momma " and my husband " dada " and even naming

> several shapes and almost all the letters in the alphabet. He will

> follow one-step commands and some that require him to move to

another

> room. (I'm not sure what it all means, but it sounds pretty

good.)

> However, I am concerned about the amount of actual " speech therapy "

> he is getting. I'm not sure how speech therapy works at this young

> of an age and how much is needed to get the best possible results.

> Most of what they do with him is OT. I am just now beginning to

> understand the reason for the OT and how it relates to speech. But

> how much speech is enough? The program he is won't provide a

> diagnosis. They " treat the child, not the disability. " But I am

> concerned that he is receiving a broad umbrella of " treatment " and

> want to be sure it is enough. All the research states that early

> intervention is so important and that if a child has apraxia,

he/she

> would require intense speech therapy as early as possible. He

hasn't

> been diagnosed with anything except a speech delay as of yet, but I

> don't want to lose any precious time here.

>

> Would anyone mind telling me about her child's diagnosis? How

and

> why did you " get the ball rolling? " Is apraxia only diagnosed by

an

> SLP? At what age was your child diagnosed? Did you simply get a

> referral from your PED and set up an appointment with an SLP? I

have

> heard it cannot be diagnosed until around age 3. Am I jumping the

> gun here? And what sort of speech therapy do you receive? How

> often? What do they do? Any suggestions, advice, or comments

would

> be appreciated. Thank you so much for reading!

>

[Guest guest]

I wholeheartedly agree with everything ilizzy said - and I second and

third it all too!

My son was EI eval at 21 months and didn't qualifyt even though they

listed him as expressive speech delayed. We were left with " doign

nothing and having him re-eval in 3 months " or doing something on our

own. I researched ST via my insurance and he has been in ST since

April, 2007. ST at this age is SO impactful, even if he doesn't

start spewing words immediately.

My is also stubborn, but it shows itself in other ways, not

just speech. Your son could clearly be stubborn in many aspects but

seriously have a processing disorder.

Just a few thoughts - keep at it. Keep reading, keep asking and

questioning and stay involved.

Try the baby babble and teach2talk videos - they're hokey but they

work. Narrate EVERYTHING for him and even answer for him when you

ask a question and he doesn't answer (What do you need ? Oh,

you need help? Let mommy help you. Oh, you need me to fix the

puzzle, Let's fix it together. Look mommy fixed it.)

Try Omega 3 - I started 1/2 tsp Nordic Naturals DHA Omega 3

(strawberry flavored) in 's kefir in December, before our DAn

visit. I saw subtle results within a week and major ones within a

month. Since our DAN visit last week, we've upped it to a full

teaspoon once a day. Start slow, every other day so the tummy

doesn't get crazy and work up to each day.

Have him checked out by a pediatric ENT - check for ear canal

deficiencies and get a hearing test. Get a negative pressure test

too. We found out that was filled up with fluid (I knew this

from chronic ear infections) and that was causing him to hear like he

was underwater - undoubtably a cog in the wheel of speech

development. the negative pressure test told us he was walking

around like he was in a plane all the time, with tremendous pressure

in his head that wasmaking him frustrated. My got tubes in

June of 2007 and this with the ST has made all the difference in the

world.

DO NOT RELENT. After meeting the DAn last week and having her tell

me that had we not done all that we've done since April that

would surely have 'slipped into the world of PDD/autism " I am on a

CRUSADE to get the word out early. Trust your instinct. I never

truly believed those that told me was " fine, just on his own

schedule. " I will forever listen to my mommy gut and work towards

teh ROOT PROBLEM instead of just fix the outcome.

Best of luck. Feel to email anytime.

Tina in NJ

>

> Email me offline and I'll give you our story. One thing screams out

> at me: your son and that direction thing is not stubborness. He

knows

> he is supposed to look for something but is not processing what it

> is. I will get beat up on this and I don't care: try a 2 week milk

> elimination. Also, consider nacd.org and the listening program

(your

> EI should have someone trained in it to get you started for free so

> you know if it is part of this thing. All the therapy in the world

> can't be effective if his hearing is cutting in and out. It will

help

> him but not to reach his full potential.

>

> I do not know your child or what comprises his " disorder " as the

doc

> called it but do not be paralyzed. Take action and doi it early and

> the future is bright.

>

[Guest guest]

Please email me off line and I will send you my journal of notes. You need

to move quick and take this seriously.

[ ] We're at the beginning of our journey and

needing some advice

Most of you moms (and dads) probably don't remember us. We've only

posted once or twice back in July/August when we were just beginning

our EI journey. My son, , is almost 27 months old now and is

receiving speech/OT services once/week and and OT with an EI

preschool teacher once/week. At 19-20 months he wasn't using any

words to communicate his needs, but would repeat 3-4 words when

asked. He wasn't making much eye contact and would just point and

grunt when he wanted something. Many of you very nice ladies on this

board encouraged me to call EI and have him evaluated now, rather

than wait until his second birthday. Thank you for that advice!!!!

I set up an appointment and had him evaluated by an audiologist,

speech therapist, and psychologist. They told us he clearly

qualifies for special education services. I'm not sure I agree, but

they said he might have a cognitive delay as well as an obvious

speech delay. At the time, he wasn't following simple one-step

commands or requests. For example, if I asked him to go get his

shoes, he would just look around and/or ignore me. I'm not sure if

there truly is a cognitive delay or if he was just being stubborn.

(He has proven that he is stubborn in the past) In my mind though,

it didn't matter because having a cognitive delay would mean he

qualified for another hour of service/week. The more help available,

the better. right? At that age, it's so hard to know what

is " normal " development and what they " should " be doing. Back then,

I suspected he might have mild autism, but after having him evaluated

by a pediatric neurologist, I learned that most of his tendencies

were most likely the result of his frustration with not being

understood and his limited ability to communicate. The neurologist

said he had a developmental speech disorder and that I should just

continue with the speech/OT. I left his office thinking " great

news! will catch up. " However, then I started wondering about

the word " disorder. " Isn't that a lifelong condition? Could he have

given me a diagnosis for apraxia? Would he have recommended an SLP

if there was cause for concern?

I think the EI services are really helping him. By mid-October, he

began using about 6-8 signs to communicate needs and once in a while

would put two of them together. Lately, he has been saying more

words, calling me " a momma " and my husband " dada " and even naming

several shapes and almost all the letters in the alphabet. He will

follow one-step commands and some that require him to move to another

room. (I'm not sure what it all means, but it sounds pretty good.)

However, I am concerned about the amount of actual " speech therapy "

he is getting. I'm not sure how speech therapy works at this young

of an age and how much is needed to get the best possible results.

Most of what they do with him is OT. I am just now beginning to

understand the reason for the OT and how it relates to speech. But

how much speech is enough? The program he is won't provide a

diagnosis. They " treat the child, not the disability. " But I am

concerned that he is receiving a broad umbrella of " treatment " and

want to be sure it is enough. All the research states that early

intervention is so important and that if a child has apraxia, he/she

would require intense speech therapy as early as possible. He hasn't

been diagnosed with anything except a speech delay as of yet, but I

don't want to lose any precious time here.

Would anyone mind telling me about her child's diagnosis? How and

why did you " get the ball rolling? " Is apraxia only diagnosed by an

SLP? At what age was your child diagnosed? Did you simply get a

referral from your PED and set up an appointment with an SLP? I have

heard it cannot be diagnosed until around age 3. Am I jumping the

gun here? And what sort of speech therapy do you receive? How

often? What do they do? Any suggestions, advice, or comments would

be appreciated. Thank you so much for reading!

[Guest guest]

Tina,

Tell me more about this kefir DHA concoction. Are you making or

buying kefir premade?

Also, that underwater processing thing and its relation to milk: I

have had that....it affects it all, processing and motor planning. My

presentation to the docs got better the longer I was off milk because

my own communication skills improved. Imagine what that is like in a

small child. And the ENTs (not mine though) downplay negative

pressure. Nuts!

L

> >

> > Email me offline and I'll give you our story. One thing screams

out

> > at me: your son and that direction thing is not stubborness. He

> knows

> > he is supposed to look for something but is not processing what

it

> > is. I will get beat up on this and I don't care: try a 2 week

milk

> > elimination. Also, consider nacd.org and the listening program

> (your

> > EI should have someone trained in it to get you started for free

so

> > you know if it is part of this thing. All the therapy in the

world

> > can't be effective if his hearing is cutting in and out. It will

> help

> > him but not to reach his full potential.

> >

> > I do not know your child or what comprises his " disorder " as the

> doc

> > called it but do not be paralyzed. Take action and doi it early

and

> > the future is bright.

> >

>

[Guest guest]

First let me say that I have 2 older girls, so when my son wasn't

talking like they did, everyone said " he's a boy, he'll talk later " .

I was asking everyone - doctor, co-workers (I'm a prek sped teacher,

so I asked other sped teachers and SLPs). They all said there's no

problem, wait until after he's 2. Well, I took matters into my own

hands and called EI. They agreed to do a hearing screen first

(showed negative pressure), and then set up a speech eval. I had his

ears rechecked by the audiologist that I work with (still neg

pressure, this showed up every time he had his ears checked by her,

about every 3 mos). The EI speech eval was basically the SLP

listening to Garret " talk " (only had 5 recognizable words at age 23

mos) and asking me questions. The EI sped teacher was also there and

observed him playing with toys and asking questions about him to me.

He listened very well and followed directions given, so we all knew

he could hear, just couldn't talk. The SLP said after about 20

minutes she felt he has apraxia, and he needed ST. So we came up

with an IFSP, he got ST every other week for 30 minutes with us

taking pictures home to label/go over with him. We con't. to get ST

through the summer which was great and actually increased therapy to

once weekly for about 6 weeks, but then the SLP's caseload increased

and she couldn't fit him in weekly and since she knew we'd work with

him, she bumped him back to bi-weekly ST. Now we're aging out of EI

services and trying to deal with the local school district. He's been

eval'd and qualifies for ST through the school. We have our second

IEP mtg on Monday where I'm proposing they pay for private ST b/c

they don't have a SLP. I was told by the EI teacher that our school

district was trying to work out a contract with the EI SLP to provide

ST to Garret. So I guess all of my complaining has (maybe) worked.

I don't know yet, I feel like I've won a battle, but not the war.

(YET!) I never took my son to a nuerologist,we tried fish oil, but

didn't see the dramatic results that many on this board have seen so

we stopped. I did take him to an ENT who said his ears were fine, he

didn't need tubes. I just had his ears rechecked by the audiologist

and they were normal (first time)! Garret's speech has increased

dramatically, although if the context is unknown, well, he may as

well be speaking Chinese! But he will act out what he's trying to

tell us if we don't understand. He'll be a great charades player

later in life (sorry, just have to find some humor in all of this!)

So that's where we are right now.

[Guest guest]

I agree with Liz and Colleen

We thought we were past the OT part and now we are back in OT 2x a

week instead of 1x a week and are now dealing with visual

perception/spacial issues.

This stuff just builds. If you don't catch it early and get them

caught up; be prepared for a very long rough road ahead. If you want

to email feel free I will share our long journey as well. Everyone

here has heard it several times so I won't go into it yet again.

Positive - if you son dosen't have dystharthia, that is a good thing

and he should eventually be able to talk 100% Intel. - I don't know

your child and am just trying to be positive for you.

The baby was dianosed with major Milk issues (april 2007), he is now

speaking in 3 word sentences at 16 months after taking him off of milk

(7 mo old) and having bilateral tubes (9 mo) and Nasal duct probing (

7 mo) done.

The 3 yr old has been in speech a year now, and I thought all was

going very well and we would be discharged... His EI teacher called

and wants an OT to look at him..

The 4.5 yr old is back in private OT 2x a week, EI is looking for a

different classroom for him but are not being that positive. We will see.

Private Speech just upped to 3x week.

Basically, if you don't catch the one or two first delays early they

just build and build and build. Pretty soon you see your child

slipping further behind their peers and that isnt' any fun to watch.

SO trying a milk elimination for 2-3 weeks and the having a milk day

and watch for the results is a pretty cheap and easy thing to do

compared to some of the ideas floated on this board. Also the

allergist will ask if you have done this if/when you go in for allergy

testing.

If you house is like mine was; we never ever ran out of milk so how

could I see what they were like off of milk if they never were off of

milk? Thank goodness the milk man took a day off and I ran out. I

don't notice anything until 2-3 days after the infraction that that

makes it hard to diagnose as well.

>

> Most of you moms (and dads) probably don't remember us. We've only

> posted once or twice back in July/August when we were just beginning

> our EI journey. My son, , is almost 27 months old now and is

> receiving speech/OT services once/week and and OT with an EI

> preschool teacher once/week. At 19-20 months he wasn't using any

> words to communicate his needs, but would repeat 3-4 words when

> asked. He wasn't making much eye contact and would just point and

> grunt when he wanted something. Many of you very nice ladies on this

> board encouraged me to call EI and have him evaluated now, rather

> than wait until his second birthday. Thank you for that advice!!!!

>

> I set up an appointment and had him evaluated by an audiologist,

> speech therapist, and psychologist. They told us he clearly

> qualifies for special education services. I'm not sure I agree, but

> they said he might have a cognitive delay as well as an obvious

> speech delay. At the time, he wasn't following simple one-step

> commands or requests. For example, if I asked him to go get his

> shoes, he would just look around and/or ignore me. I'm not sure if

> there truly is a cognitive delay or if he was just being stubborn.

> (He has proven that he is stubborn in the past) In my mind though,

> it didn't matter because having a cognitive delay would mean he

> qualified for another hour of service/week. The more help available,

> the better… right? At that age, it's so hard to know what

> is " normal " development and what they " should " be doing. Back then,

> I suspected he might have mild autism, but after having him evaluated

> by a pediatric neurologist, I learned that most of his tendencies

> were most likely the result of his frustration with not being

> understood and his limited ability to communicate. The neurologist

> said he had a developmental speech disorder and that I should just

> continue with the speech/OT. I left his office thinking " great

> news! will catch up. " However, then I started wondering about

> the word " disorder. " Isn't that a lifelong condition? Could he have

> given me a diagnosis for apraxia? Would he have recommended an SLP

> if there was cause for concern?

>

> I think the EI services are really helping him. By mid-October, he

> began using about 6-8 signs to communicate needs and once in a while

> would put two of them together. Lately, he has been saying more

> words, calling me " a momma " and my husband " dada " and even naming

> several shapes and almost all the letters in the alphabet. He will

> follow one-step commands and some that require him to move to another

> room. (I'm not sure what it all means, but it sounds pretty good.)

> However, I am concerned about the amount of actual " speech therapy "

> he is getting. I'm not sure how speech therapy works at this young

> of an age and how much is needed to get the best possible results.

> Most of what they do with him is OT. I am just now beginning to

> understand the reason for the OT and how it relates to speech. But

> how much speech is enough? The program he is won't provide a

> diagnosis. They " treat the child, not the disability. " But I am

> concerned that he is receiving a broad umbrella of " treatment " and

> want to be sure it is enough. All the research states that early

> intervention is so important and that if a child has apraxia, he/she

> would require intense speech therapy as early as possible. He hasn't

> been diagnosed with anything except a speech delay as of yet, but I

> don't want to lose any precious time here.

>

> Would anyone mind telling me about her child's diagnosis? How and

> why did you " get the ball rolling? " Is apraxia only diagnosed by an

> SLP? At what age was your child diagnosed? Did you simply get a

> referral from your PED and set up an appointment with an SLP? I have

> heard it cannot be diagnosed until around age 3. Am I jumping the

> gun here? And what sort of speech therapy do you receive? How

> often? What do they do? Any suggestions, advice, or comments would

> be appreciated. Thank you so much for reading!

>

[Guest guest]

>Time to post this again...published through the Pediatric Academy

Society Meetings in Toronto last year...presented at the " Late-

breaking session " . An update on nearly 200 families (many of you -

thanks for all the info)...has been submitted to the Pediatric

mettings this May 2008. Still waiting to hear if it was accepted.

Once published, I will post it on the site. However we are calling

this " syndrome of allergy, apraxia and malabsorption " , as most of the

responding children having a combo of allergy and gut issues together

with their verbal apraxia, coordination issues (global dyspraxia) and

sensory issues. This is clearly a syndrome.

There is more that can be done for these boys in addition to speech

and occupatioinal therapy - although these are also critical

interventions. We need to remove the roadblock that is contributing

to apraxia, and somehow omega 3, vitamin E and inflammation are

playing a role. (Neuro symptoms of vit E deficiency: Speech

difficulty, coordination problems, low tone, loss of reflexes, loss

of pain sensation (high pain tolerance), poor proprioception and

positional sense - ie poor concept of body's position in space - so

walks into walls etc). It is not a coincidence. Vit E protects the

omegas from early destruction in the cell membranes.

Scrampled/oxidized omegas in your cell membrane will not allow

messages to pass through fluidly...AKA motor planning issues may

result. Inflammation/oxidative stress will consume anti-oxidants like

vit E...and the omegas are more vulnerable to destruction. Poor

absorption of nutrients at the gut level as a result of inflammation

will contribute to multiple nutritional deficiencies and compound the

problem. Gut inflammation will allow for food proteins to leak into

the blood stream, and the body will react by developing food

allergies. It is all linked. A more comprehensive metabolic work-up

is warranted for these children...then just an OT and speech

assessment. Treatable deficiencies like carnitine, zinc, fat soluble

vitamins...need to be identified and treated. Gluten sensitivity and

other food allergies (like milk, yeast -which seem common)...need to

be sought out, and dietary modifications can make a huge difference.

Writing grants now - still trying to get funding to validate this.

(So very busy and won't be responding to posts - just lurking

whenever I have a minute - which is rare, and posting when I think

some info might be helpful).

Title: Impact Of Vitamin E And Omega 3 Supplementation In Children

With Verbal Apraxia

R , MD1 and Marilyn C Agin, MD. 1Emergency Medicine,

Children's Hospital & Research Center Oakland, Oakland, CA, United

States.

Background: Verbal apraxia (VA) is a neurologically-based motor

planning disorder of unknown etiology common in autism spectrum

disorders (ASD) that anecdotally responds to omega 3 polyunsaturated

fatty acid (PUFA) supplementation. Vitamin (vit) E deficiency causes

symptoms that overlap those of VA. PUFAs in the cell membrane are

vulnerable to lipid peroxidation early destruction if vit E is not

readily available, potentially leading to neurological sequelae.

Inflammation of the gastrointestinal tract and gluten sensitivity may

contribute to malabsorption of nutrients such as vit E and carnitine,

contributing to fatty acid metabolism dysfunction and neurological

abnormalities.

Objective: Determine efficacy of vit E and PUFA supplementation in

children with VA.

Design/Methods: 50 children diagnosed with VA were treated with vit E

+ PUFA. 10 of these children were known to have ASD. A celiac panel,

fat soluable vitamins, carnitine level was obtained in patients

having blood analyzed.

Results: Age ranged from 2-13 years, (majority < 5 yrs), 38/50 were

boys. A history of gastrointestinal symptoms, sensory integration

dysfunction, low muscle tone coordination difficulties (dyspraxia)

were commonly reported. 48 families (96%) anecdotally reported

dramatic improvements in a number of areas including speech,

imitation, coordination, eye contact, behavior, sensory issues the

development of pain sensation. 2 children experienced new tearful or

aggressive behavior within 3 days of initiating vit E (400 IU/d)

without apparent benefits in speech, therapy was withdrawn within a

week. No other adverse effects were reported. Plasma alpha tocopherol

levels varied in children tested (low in 2, high in 4 and normal in

4), however pre-treatment levels did not reflect clinical response.

Low plasma carnitine was identified in 13/14 (93%) children.

Antigliadin IgG antibodies were high in 9/11 (82%) children tested. 2

children reported vit D deficiency early signs of rickets.

Conclusions: We describe a new disease paradigm of abnormal vit E

fatty acid metabolism causing neurological dysfunction in VA that

responds to a safe nutritional intervention. The association of

carnitine deficiency gluten sensitivity with VA is a novel

observation, suggesting that these children deserve a more

comprehensive metabolic work-up than what is current standard

practice. Larger controlled trials in apraxia autism are warranted.

>

> [ ] We're at the beginning of our

journey and

> needing some advice

>

>

>

> Most of you moms (and dads) probably don't remember us. We've only

> posted once or twice back in July/August when we were just

beginning

> our EI journey. My son, , is almost 27 months old now and is

> receiving speech/OT services once/week and and OT with an EI

> preschool teacher once/week. At 19-20 months he wasn't using any

> words to communicate his needs, but would repeat 3-4 words when

> asked. He wasn't making much eye contact and would just point and

> grunt when he wanted something. Many of you very nice ladies on

this

> board encouraged me to call EI and have him evaluated now, rather

> than wait until his second birthday. Thank you for that advice!!!!

>

> I set up an appointment and had him evaluated by an audiologist,

> speech therapist, and psychologist. They told us he clearly

> qualifies for special education services. I'm not sure I agree, but

> they said he might have a cognitive delay as well as an obvious

> speech delay. At the time, he wasn't following simple one-step

> commands or requests. For example, if I asked him to go get his

> shoes, he would just look around and/or ignore me. I'm not sure if

> there truly is a cognitive delay or if he was just being stubborn.

> (He has proven that he is stubborn in the past) In my mind though,

> it didn't matter because having a cognitive delay would mean he

> qualified for another hour of service/week. The more help

available,

> the better. right? At that age, it's so hard to know what

> is " normal " development and what they " should " be doing. Back then,

> I suspected he might have mild autism, but after having him

evaluated

> by a pediatric neurologist, I learned that most of his tendencies

> were most likely the result of his frustration with not being

> understood and his limited ability to communicate. The neurologist

> said he had a developmental speech disorder and that I should just

> continue with the speech/OT. I left his office thinking " great

> news! will catch up. " However, then I started wondering about

> the word " disorder. " Isn't that a lifelong condition? Could he have

> given me a diagnosis for apraxia? Would he have recommended an SLP

> if there was cause for concern?

>

> I think the EI services are really helping him. By mid-October, he

> began using about 6-8 signs to communicate needs and once in a

while

> would put two of them together. Lately, he has been saying more

> words, calling me " a momma " and my husband " dada " and even naming

> several shapes and almost all the letters in the alphabet. He will

> follow one-step commands and some that require him to move to

another

> room. (I'm not sure what it all means, but it sounds pretty good.)

> However, I am concerned about the amount of actual " speech therapy "

> he is getting. I'm not sure how speech therapy works at this young

> of an age and how much is needed to get the best possible results.

> Most of what they do with him is OT. I am just now beginning to

> understand the reason for the OT and how it relates to speech. But

> how much speech is enough? The program he is won't provide a

> diagnosis. They " treat the child, not the disability. " But I am

> concerned that he is receiving a broad umbrella of " treatment " and

> want to be sure it is enough. All the research states that early

> intervention is so important and that if a child has apraxia,

he/she

> would require intense speech therapy as early as possible. He

hasn't

> been diagnosed with anything except a speech delay as of yet, but I

> don't want to lose any precious time here.

>

> Would anyone mind telling me about her child's diagnosis? How and

> why did you " get the ball rolling? " Is apraxia only diagnosed by an

> SLP? At what age was your child diagnosed? Did you simply get a

> referral from your PED and set up an appointment with an SLP? I

have

> heard it cannot be diagnosed until around age 3. Am I jumping the

> gun here? And what sort of speech therapy do you receive? How

> often? What do they do? Any suggestions, advice, or comments would

> be appreciated. Thank you so much for reading!

>

>

>

>

>

>

>

>

[Guest guest]

As always, this is extremely helpful. has remaining issues

but still has and had better balance and motorplanning than true

apraxics and always could imitate (once off allergens), just not

words, until allergen loss. I am missing remaining allergens (s) and

some of this may be remaining fluoride or permanent damage. I no

longer suspect stroke as he has had intermittent articulation,

usually E-related which spells allergen, metal, or both. Then there

is the outstanding threat of his positive Lymes screening. All to be

addressed. What he has not shared with these boys in the past was the

carnitine need and he is less tired than them. Now that he has

detoxed more my fear as always is that I may have created new issues

there so follow up continues. My boy fits 2/3 of the syndrome but I

suspect not the full monty as the fish oil and E, when supplemented,

stayed with him...less of a transport issue. Had I given more, which

I intend to do in the future, I'd get full skill base I believe. Same

held true when we added B. Most of his gut stuff was antibiotic

linked (in utero and beyond) with a side of DQ1.

Not sure I would have had a clue without you and this board. The plan

as always is to safely obtain info and not do anything stupid that

inadvertantly harms my kid. I credit you and your studies, one past,

and the ones in the future, for helping me find my boy. Oh and what a

boy he is. I LOVE his sense of humor...a different boy than my statue

of a year ago. I will be handing this study and the future ones out

to every doc I see.

God Bless you and your kids!

Liz

> >Time to post this again...published through the Pediatric Academy

> Society Meetings in Toronto last year...presented at the " Late-

> breaking session " . An update on nearly 200 families (many of you -

> thanks for all the info)...has been submitted to the Pediatric

> mettings this May 2008. Still waiting to hear if it was accepted.

> Once published, I will post it on the site. However we are calling

> this " syndrome of allergy, apraxia and malabsorption " , as most of

the

> responding children having a combo of allergy and gut issues

together

> with their verbal apraxia, coordination issues (global dyspraxia)

and

> sensory issues. This is clearly a syndrome.

>

> There is more that can be done for these boys in addition to speech

> and occupatioinal therapy - although these are also critical

> interventions. We need to remove the roadblock that is contributing

> to apraxia, and somehow omega 3, vitamin E and inflammation are

> playing a role. (Neuro symptoms of vit E deficiency: Speech

> difficulty, coordination problems, low tone, loss of reflexes, loss

> of pain sensation (high pain tolerance), poor proprioception and

> positional sense - ie poor concept of body's position in space - so

> walks into walls etc). It is not a coincidence. Vit E protects the

> omegas from early destruction in the cell membranes.

> Scrampled/oxidized omegas in your cell membrane will not allow

> messages to pass through fluidly...AKA motor planning issues may

> result. Inflammation/oxidative stress will consume anti-oxidants

like

> vit E...and the omegas are more vulnerable to destruction. Poor

> absorption of nutrients at the gut level as a result of

inflammation

> will contribute to multiple nutritional deficiencies and compound

the

> problem. Gut inflammation will allow for food proteins to leak into

> the blood stream, and the body will react by developing food

> allergies. It is all linked. A more comprehensive metabolic work-

up

> is warranted for these children...then just an OT and speech

> assessment. Treatable deficiencies like carnitine, zinc, fat

soluble

> vitamins...need to be identified and treated. Gluten sensitivity

and

> other food allergies (like milk, yeast -which seem common)...need

to

> be sought out, and dietary modifications can make a huge

difference.

>

> Writing grants now - still trying to get funding to validate this.

> (So very busy and won't be responding to posts - just lurking

> whenever I have a minute - which is rare, and posting when I think

> some info might be helpful).

>

>

> Title: Impact Of Vitamin E And Omega 3 Supplementation In Children

> With Verbal Apraxia

> R , MD1 and Marilyn C Agin, MD. 1Emergency Medicine,

> Children's Hospital & Research Center Oakland, Oakland, CA, United

> States.

>

> Background: Verbal apraxia (VA) is a neurologically-based motor

> planning disorder of unknown etiology common in autism spectrum

> disorders (ASD) that anecdotally responds to omega 3

polyunsaturated

> fatty acid (PUFA) supplementation. Vitamin (vit) E deficiency

causes

> symptoms that overlap those of VA. PUFAs in the cell membrane are

> vulnerable to lipid peroxidation early destruction if vit E is not

> readily available, potentially leading to neurological sequelae.

> Inflammation of the gastrointestinal tract and gluten sensitivity

may

> contribute to malabsorption of nutrients such as vit E and

carnitine,

> contributing to fatty acid metabolism dysfunction and neurological

> abnormalities.

> Objective: Determine efficacy of vit E and PUFA supplementation in

> children with VA.

> Design/Methods: 50 children diagnosed with VA were treated with vit

E

> + PUFA. 10 of these children were known to have ASD. A celiac

panel,

> fat soluable vitamins, carnitine level was obtained in patients

> having blood analyzed.

> Results: Age ranged from 2-13 years, (majority < 5 yrs), 38/50

were

> boys. A history of gastrointestinal symptoms, sensory integration

> dysfunction, low muscle tone coordination difficulties (dyspraxia)

> were commonly reported. 48 families (96%) anecdotally reported

> dramatic improvements in a number of areas including speech,

> imitation, coordination, eye contact, behavior, sensory issues the

> development of pain sensation. 2 children experienced new tearful

or

> aggressive behavior within 3 days of initiating vit E (400 IU/d)

> without apparent benefits in speech, therapy was withdrawn within

a

> week. No other adverse effects were reported. Plasma alpha

tocopherol

> levels varied in children tested (low in 2, high in 4 and normal in

> 4), however pre-treatment levels did not reflect clinical response.

> Low plasma carnitine was identified in 13/14 (93%) children.

> Antigliadin IgG antibodies were high in 9/11 (82%) children tested.

2

> children reported vit D deficiency early signs of rickets.

> Conclusions: We describe a new disease paradigm of abnormal vit E

> fatty acid metabolism causing neurological dysfunction in VA that

> responds to a safe nutritional intervention. The association of

> carnitine deficiency gluten sensitivity with VA is a novel

> observation, suggesting that these children deserve a more

> comprehensive metabolic work-up than what is current standard

> practice. Larger controlled trials in apraxia autism are warranted.

>

>

>

>

> >

> > [ ] We're at the beginning of our

> journey and

> > needing some advice

> >

> >

> >

> > Most of you moms (and dads) probably don't remember us. We've

only

> > posted once or twice back in July/August when we were just

> beginning

> > our EI journey. My son, , is almost 27 months old now and is

> > receiving speech/OT services once/week and and OT with an EI

> > preschool teacher once/week. At 19-20 months he wasn't using any

> > words to communicate his needs, but would repeat 3-4 words when

> > asked. He wasn't making much eye contact and would just point and

> > grunt when he wanted something. Many of you very nice ladies on

> this

> > board encouraged me to call EI and have him evaluated now, rather

> > than wait until his second birthday. Thank you for that

advice!!!!

> >

> > I set up an appointment and had him evaluated by an audiologist,

> > speech therapist, and psychologist. They told us he clearly

> > qualifies for special education services. I'm not sure I agree,

but

> > they said he might have a cognitive delay as well as an obvious

> > speech delay. At the time, he wasn't following simple one-step

> > commands or requests. For example, if I asked him to go get his

> > shoes, he would just look around and/or ignore me. I'm not sure

if

> > there truly is a cognitive delay or if he was just being

stubborn.

> > (He has proven that he is stubborn in the past) In my mind

though,

> > it didn't matter because having a cognitive delay would mean he

> > qualified for another hour of service/week. The more help

> available,

> > the better. right? At that age, it's so hard to know what

> > is " normal " development and what they " should " be doing. Back

then,

> > I suspected he might have mild autism, but after having him

> evaluated

> > by a pediatric neurologist, I learned that most of his tendencies

> > were most likely the result of his frustration with not being

> > understood and his limited ability to communicate. The

neurologist

> > said he had a developmental speech disorder and that I should

just

> > continue with the speech/OT. I left his office thinking " great

> > news! will catch up. " However, then I started wondering

about

> > the word " disorder. " Isn't that a lifelong condition? Could he

have

> > given me a diagnosis for apraxia? Would he have recommended an

SLP

> > if there was cause for concern?

> >

> > I think the EI services are really helping him. By mid-October,

he

> > began using about 6-8 signs to communicate needs and once in a

> while

> > would put two of them together. Lately, he has been saying more

> > words, calling me " a momma " and my husband " dada " and even naming

> > several shapes and almost all the letters in the alphabet. He

will

> > follow one-step commands and some that require him to move to

> another

> > room. (I'm not sure what it all means, but it sounds pretty

good.)

> > However, I am concerned about the amount of actual " speech

therapy "

> > he is getting. I'm not sure how speech therapy works at this

young

> > of an age and how much is needed to get the best possible

results.

> > Most of what they do with him is OT. I am just now beginning to

> > understand the reason for the OT and how it relates to speech.

But

> > how much speech is enough? The program he is won't provide a

> > diagnosis. They " treat the child, not the disability. " But I am

> > concerned that he is receiving a broad umbrella of " treatment "

and

> > want to be sure it is enough. All the research states that early

> > intervention is so important and that if a child has apraxia,

> he/she

> > would require intense speech therapy as early as possible. He

> hasn't

> > been diagnosed with anything except a speech delay as of yet, but

I

> > don't want to lose any precious time here.

> >

> > Would anyone mind telling me about her child's diagnosis? How and

> > why did you " get the ball rolling? " Is apraxia only diagnosed by

an

> > SLP? At what age was your child diagnosed? Did you simply get a

> > referral from your PED and set up an appointment with an SLP? I

> have

> > heard it cannot be diagnosed until around age 3. Am I jumping the

> > gun here? And what sort of speech therapy do you receive? How

> > often? What do they do? Any suggestions, advice, or comments

would

> > be appreciated. Thank you so much for reading!

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Ladies,

Thank you all so much for your responses. I have tried to e-mail

those of you who offered to share your stories. I hope my messages

went through and am really looking forward to reading them. As I

have said, this is totally overwhelming! I just feel like I have so

much research ahead of me and time is of the essence. I want so much

to make an informed decision, yet time goes by so quickly and early

intervention is so important. I am going to look into

supplementation and diet modification... but again, my knowledge is

minimal. I was a kid raised on cheeseburgers and Taco Bell! LOL!

What do I know about diet???

I think I mentioned this before, but is 27 months old. I also

have a 5 year old daughter who was an early talker. By this age she

was already singing songs and talking in full sentences. I have a

cute video of her holding up a foam number 9 and then flipping it

upsidedown and repeating 9...6...9...6. Family and friends have also

told me not to worry because is a boy... girls talk faster...

his big sister is talking for him... you are able to anticipate his

needs... try not to give in to his requests unless he uses words...

I know it's more than that though.

After the initial EI evaluation, they let me know that aside from

speech and language, his overall development is age level. I really

do believe he does comprehend most of what we're saying because he

has made thousands of strides as far as following directions. It's

just difficult at this age to know whether he is struggling to

comprehend what I'm saying, being stubborn, or just caught up with

other sensory issues around him. He is very focused on lights.

Sometimes during therapy, he gets distracted by the changes in

light. As part of his OT, they have the kids dance to a song that

after a verse or two says " freeze! " Then they turn off the lights and

try to get the kids to stand still until the music starts up again.

Once the lights go off, will just stare at the ceiling. It's

unusual for him because he is very responsive to music. Usually he

will stop what he is doing just to wiggle and sway when he hears a

song he likes. He gets very focused on one thing and it's sometimes

hard to recapture his attention. However, once I have it back, I am

able to keep him focused on an activity for a long time. We can do

peg puzzles together for a half hour (or longer) if I want to.

I'm rambling again. But I do have a few questions regarding some of

you responses.

For those of you who eliminated milk for two weeks, did you eliminate

dairy alltogether?

What is dystharthia? I tried to Google it and got nothing.

Question about the DAN docs. Does DAN stand for Defeat Autism Now?

Those of you who mentioned seeing a DAN doctor, does your child have

autism? From what little I know about apraxia, some of the symptoms

are similar. I also know that Dan doctors are difficult to come by.

Will they talk to parents of children who do not have autism? From

what I've read, they do a lot with diet modification. I'd love to

know more about that.

I need to speak to my EI service coordinator. I wasn't aware that EI

services had SLPs ready to evaluate. Maybe it's different in every

state, but it seems as though our EI is not interested in diagnosis

and I thought we only had Speech Therapists working there. I don't

know why I've become so hung up on a diagnosis lately. It's not that

I am searching for a label or would ever allow that to put a limit on

my child. I just feel better knowing what I'm dealing with and how

to handle it. This is just so overwhelming!

Thank you all so much for listening to me!

> >Time to post this again...published through the Pediatric Academy

> Society Meetings in Toronto last year...presented at the " Late-

> breaking session " . An update on nearly 200 families (many of you -

> thanks for all the info)...has been submitted to the Pediatric

> mettings this May 2008. Still waiting to hear if it was accepted.

> Once published, I will post it on the site. However we are calling

> this " syndrome of allergy, apraxia and malabsorption " , as most of

the

> responding children having a combo of allergy and gut issues

together

> with their verbal apraxia, coordination issues (global dyspraxia)

and

> sensory issues. This is clearly a syndrome.

>

> There is more that can be done for these boys in addition to speech

> and occupatioinal therapy - although these are also critical

> interventions. We need to remove the roadblock that is contributing

> to apraxia, and somehow omega 3, vitamin E and inflammation are

> playing a role. (Neuro symptoms of vit E deficiency: Speech

> difficulty, coordination problems, low tone, loss of reflexes, loss

> of pain sensation (high pain tolerance), poor proprioception and

> positional sense - ie poor concept of body's position in space - so

> walks into walls etc). It is not a coincidence. Vit E protects the

> omegas from early destruction in the cell membranes.

> Scrampled/oxidized omegas in your cell membrane will not allow

> messages to pass through fluidly...AKA motor planning issues may

> result. Inflammation/oxidative stress will consume anti-oxidants

like

> vit E...and the omegas are more vulnerable to destruction. Poor

> absorption of nutrients at the gut level as a result of

inflammation

> will contribute to multiple nutritional deficiencies and compound

the

> problem. Gut inflammation will allow for food proteins to leak into

> the blood stream, and the body will react by developing food

> allergies. It is all linked. A more comprehensive metabolic work-

up

> is warranted for these children...then just an OT and speech

> assessment. Treatable deficiencies like carnitine, zinc, fat

soluble

> vitamins...need to be identified and treated. Gluten sensitivity

and

> other food allergies (like milk, yeast -which seem common)...need

to

> be sought out, and dietary modifications can make a huge

difference.

>

> Writing grants now - still trying to get funding to validate this.

> (So very busy and won't be responding to posts - just lurking

> whenever I have a minute - which is rare, and posting when I think

> some info might be helpful).

>

>

> Title: Impact Of Vitamin E And Omega 3 Supplementation In Children

> With Verbal Apraxia

> R , MD1 and Marilyn C Agin, MD. 1Emergency Medicine,

> Children's Hospital & Research Center Oakland, Oakland, CA, United

> States.

>

> Background: Verbal apraxia (VA) is a neurologically-based motor

> planning disorder of unknown etiology common in autism spectrum

> disorders (ASD) that anecdotally responds to omega 3

polyunsaturated

> fatty acid (PUFA) supplementation. Vitamin (vit) E deficiency

causes

> symptoms that overlap those of VA. PUFAs in the cell membrane are

> vulnerable to lipid peroxidation early destruction if vit E is not

> readily available, potentially leading to neurological sequelae.

> Inflammation of the gastrointestinal tract and gluten sensitivity

may

> contribute to malabsorption of nutrients such as vit E and

carnitine,

> contributing to fatty acid metabolism dysfunction and neurological

> abnormalities.

> Objective: Determine efficacy of vit E and PUFA supplementation in

> children with VA.

> Design/Methods: 50 children diagnosed with VA were treated with vit

E

> + PUFA. 10 of these children were known to have ASD. A celiac

panel,

> fat soluable vitamins, carnitine level was obtained in patients

> having blood analyzed.

> Results: Age ranged from 2-13 years, (majority < 5 yrs), 38/50

were

> boys. A history of gastrointestinal symptoms, sensory integration

> dysfunction, low muscle tone coordination difficulties (dyspraxia)

> were commonly reported. 48 families (96%) anecdotally reported

> dramatic improvements in a number of areas including speech,

> imitation, coordination, eye contact, behavior, sensory issues the

> development of pain sensation. 2 children experienced new tearful

or

> aggressive behavior within 3 days of initiating vit E (400 IU/d)

> without apparent benefits in speech, therapy was withdrawn within

a

> week. No other adverse effects were reported. Plasma alpha

tocopherol

> levels varied in children tested (low in 2, high in 4 and normal in

> 4), however pre-treatment levels did not reflect clinical response.

> Low plasma carnitine was identified in 13/14 (93%) children.

> Antigliadin IgG antibodies were high in 9/11 (82%) children tested.

2

> children reported vit D deficiency early signs of rickets.

> Conclusions: We describe a new disease paradigm of abnormal vit E

> fatty acid metabolism causing neurological dysfunction in VA that

> responds to a safe nutritional intervention. The association of

> carnitine deficiency gluten sensitivity with VA is a novel

> observation, suggesting that these children deserve a more

> comprehensive metabolic work-up than what is current standard

> practice. Larger controlled trials in apraxia autism are warranted.

>

>

>

>

> >

> > [ ] We're at the beginning of our

> journey and

> > needing some advice

> >

> >

> >

> > Most of you moms (and dads) probably don't remember us. We've

only

> > posted once or twice back in July/August when we were just

> beginning

> > our EI journey. My son, , is almost 27 months old now and is

> > receiving speech/OT services once/week and and OT with an EI

> > preschool teacher once/week. At 19-20 months he wasn't using any

> > words to communicate his needs, but would repeat 3-4 words when

> > asked. He wasn't making much eye contact and would just point and

> > grunt when he wanted something. Many of you very nice ladies on

> this

> > board encouraged me to call EI and have him evaluated now, rather

> > than wait until his second birthday. Thank you for that

advice!!!!

> >

> > I set up an appointment and had him evaluated by an audiologist,

> > speech therapist, and psychologist. They told us he clearly

> > qualifies for special education services. I'm not sure I agree,

but

> > they said he might have a cognitive delay as well as an obvious

> > speech delay. At the time, he wasn't following simple one-step

> > commands or requests. For example, if I asked him to go get his

> > shoes, he would just look around and/or ignore me. I'm not sure

if

> > there truly is a cognitive delay or if he was just being

stubborn.

> > (He has proven that he is stubborn in the past) In my mind

though,

> > it didn't matter because having a cognitive delay would mean he

> > qualified for another hour of service/week. The more help

> available,

> > the better. right? At that age, it's so hard to know what

> > is " normal " development and what they " should " be doing. Back

then,

> > I suspected he might have mild autism, but after having him

> evaluated

> > by a pediatric neurologist, I learned that most of his tendencies

> > were most likely the result of his frustration with not being

> > understood and his limited ability to communicate. The

neurologist

> > said he had a developmental speech disorder and that I should

just

> > continue with the speech/OT. I left his office thinking " great

> > news! will catch up. " However, then I started wondering

about

> > the word " disorder. " Isn't that a lifelong condition? Could he

have

> > given me a diagnosis for apraxia? Would he have recommended an

SLP

> > if there was cause for concern?

> >

> > I think the EI services are really helping him. By mid-October,

he

> > began using about 6-8 signs to communicate needs and once in a

> while

> > would put two of them together. Lately, he has been saying more

> > words, calling me " a momma " and my husband " dada " and even naming

> > several shapes and almost all the letters in the alphabet. He

will

> > follow one-step commands and some that require him to move to

> another

> > room. (I'm not sure what it all means, but it sounds pretty

good.)

> > However, I am concerned about the amount of actual " speech

therapy "

> > he is getting. I'm not sure how speech therapy works at this

young

> > of an age and how much is needed to get the best possible

results.

> > Most of what they do with him is OT. I am just now beginning to

> > understand the reason for the OT and how it relates to speech.

But

> > how much speech is enough? The program he is won't provide a

> > diagnosis. They " treat the child, not the disability. " But I am

> > concerned that he is receiving a broad umbrella of " treatment "

and

> > want to be sure it is enough. All the research states that early

> > intervention is so important and that if a child has apraxia,

> he/she

> > would require intense speech therapy as early as possible. He

> hasn't

> > been diagnosed with anything except a speech delay as of yet, but

I

> > don't want to lose any precious time here.

> >

> > Would anyone mind telling me about her child's diagnosis? How and

> > why did you " get the ball rolling? " Is apraxia only diagnosed by

an

> > SLP? At what age was your child diagnosed? Did you simply get a

> > referral from your PED and set up an appointment with an SLP? I

> have

> > heard it cannot be diagnosed until around age 3. Am I jumping the

> > gun here? And what sort of speech therapy do you receive? How

> > often? What do they do? Any suggestions, advice, or comments

would

> > be appreciated. Thank you so much for reading!

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

> >Time to post this again...published through the Pediatric Academy

> Society Meetings in Toronto last year...presented at the " Late-

> breaking session " . An update on nearly 200 families (many of you -

> thanks for all the info)...has been submitted to the Pediatric

> mettings this May 2008. Still waiting to hear if it was accepted.

> Once published, I will post it on the site. However we are calling

> this " syndrome of allergy, apraxia and malabsorption " , as most of

the

> responding children having a combo of allergy and gut issues

together

> with their verbal apraxia, coordination issues (global dyspraxia)

and

> sensory issues. This is clearly a syndrome.

>

> There is more that can be done for these boys in addition to speech

> and occupatioinal therapy - although these are also critical

> interventions. We need to remove the roadblock that is contributing

> to apraxia, and somehow omega 3, vitamin E and inflammation are

> playing a role. (Neuro symptoms of vit E deficiency: Speech

> difficulty, coordination problems, low tone, loss of reflexes, loss

> of pain sensation (high pain tolerance), poor proprioception and

> positional sense - ie poor concept of body's position in space - so

> walks into walls etc). It is not a coincidence. Vit E protects the

> omegas from early destruction in the cell membranes.

> Scrampled/oxidized omegas in your cell membrane will not allow

> messages to pass through fluidly...AKA motor planning issues may

> result. Inflammation/oxidative stress will consume anti-oxidants

like

> vit E...and the omegas are more vulnerable to destruction. Poor

> absorption of nutrients at the gut level as a result of

inflammation

> will contribute to multiple nutritional deficiencies and compound

the

> problem. Gut inflammation will allow for food proteins to leak into

> the blood stream, and the body will react by developing food

> allergies. It is all linked. A more comprehensive metabolic work-

up

> is warranted for these children...then just an OT and speech

> assessment. Treatable deficiencies like carnitine, zinc, fat

soluble

> vitamins...need to be identified and treated. Gluten sensitivity

and

> other food allergies (like milk, yeast -which seem common)...need

to

> be sought out, and dietary modifications can make a huge

difference.

>

> Writing grants now - still trying to get funding to validate this.

> (So very busy and won't be responding to posts - just lurking

> whenever I have a minute - which is rare, and posting when I think

> some info might be helpful).

>

>

> Title: Impact Of Vitamin E And Omega 3 Supplementation In Children

> With Verbal Apraxia

> R , MD1 and Marilyn C Agin, MD. 1Emergency Medicine,

> Children's Hospital & Research Center Oakland, Oakland, CA, United

> States.

>

> Background: Verbal apraxia (VA) is a neurologically-based motor

> planning disorder of unknown etiology common in autism spectrum

> disorders (ASD) that anecdotally responds to omega 3

polyunsaturated

> fatty acid (PUFA) supplementation. Vitamin (vit) E deficiency

causes

> symptoms that overlap those of VA. PUFAs in the cell membrane are

> vulnerable to lipid peroxidation early destruction if vit E is not

> readily available, potentially leading to neurological sequelae.

> Inflammation of the gastrointestinal tract and gluten sensitivity

may

> contribute to malabsorption of nutrients such as vit E and

carnitine,

> contributing to fatty acid metabolism dysfunction and neurological

> abnormalities.

> Objective: Determine efficacy of vit E and PUFA supplementation in

> children with VA.

> Design/Methods: 50 children diagnosed with VA were treated with vit

E

> + PUFA. 10 of these children were known to have ASD. A celiac

panel,

> fat soluable vitamins, carnitine level was obtained in patients

> having blood analyzed.

> Results: Age ranged from 2-13 years, (majority < 5 yrs), 38/50

were

> boys. A history of gastrointestinal symptoms, sensory integration

> dysfunction, low muscle tone coordination difficulties (dyspraxia)

> were commonly reported. 48 families (96%) anecdotally reported

> dramatic improvements in a number of areas including speech,

> imitation, coordination, eye contact, behavior, sensory issues the

> development of pain sensation. 2 children experienced new tearful

or

> aggressive behavior within 3 days of initiating vit E (400 IU/d)

> without apparent benefits in speech, therapy was withdrawn within

a

> week. No other adverse effects were reported. Plasma alpha

tocopherol

> levels varied in children tested (low in 2, high in 4 and normal in

> 4), however pre-treatment levels did not reflect clinical response.

> Low plasma carnitine was identified in 13/14 (93%) children.

> Antigliadin IgG antibodies were high in 9/11 (82%) children tested.

2

> children reported vit D deficiency early signs of rickets.

> Conclusions: We describe a new disease paradigm of abnormal vit E

> fatty acid metabolism causing neurological dysfunction in VA that

> responds to a safe nutritional intervention. The association of

> carnitine deficiency gluten sensitivity with VA is a novel

> observation, suggesting that these children deserve a more

> comprehensive metabolic work-up than what is current standard

> practice. Larger controlled trials in apraxia autism are warranted.

>

>

>

>

> >

> > [ ] We're at the beginning of our

> journey and

> > needing some advice

> >

> >

> >

> > Most of you moms (and dads) probably don't remember us. We've

only

> > posted once or twice back in July/August when we were just

> beginning

> > our EI journey. My son, , is almost 27 months old now and is

> > receiving speech/OT services once/week and and OT with an EI

> > preschool teacher once/week. At 19-20 months he wasn't using any

> > words to communicate his needs, but would repeat 3-4 words when

> > asked. He wasn't making much eye contact and would just point and

> > grunt when he wanted something. Many of you very nice ladies on

> this

> > board encouraged me to call EI and have him evaluated now, rather

> > than wait until his second birthday. Thank you for that

advice!!!!

> >

> > I set up an appointment and had him evaluated by an audiologist,

> > speech therapist, and psychologist. They told us he clearly

> > qualifies for special education services. I'm not sure I agree,

but

> > they said he might have a cognitive delay as well as an obvious

> > speech delay. At the time, he wasn't following simple one-step

> > commands or requests. For example, if I asked him to go get his

> > shoes, he would just look around and/or ignore me. I'm not sure

if

> > there truly is a cognitive delay or if he was just being

stubborn.

> > (He has proven that he is stubborn in the past) In my mind

though,

> > it didn't matter because having a cognitive delay would mean he

> > qualified for another hour of service/week. The more help

> available,

> > the better. right? At that age, it's so hard to know what

> > is " normal " development and what they " should " be doing. Back

then,

> > I suspected he might have mild autism, but after having him

> evaluated

> > by a pediatric neurologist, I learned that most of his tendencies

> > were most likely the result of his frustration with not being

> > understood and his limited ability to communicate. The

neurologist

> > said he had a developmental speech disorder and that I should

just

> > continue with the speech/OT. I left his office thinking " great

> > news! will catch up. " However, then I started wondering

about

> > the word " disorder. " Isn't that a lifelong condition? Could he

have

> > given me a diagnosis for apraxia? Would he have recommended an

SLP

> > if there was cause for concern?

> >

> > I think the EI services are really helping him. By mid-October,

he

> > began using about 6-8 signs to communicate needs and once in a

> while

> > would put two of them together. Lately, he has been saying more

> > words, calling me " a momma " and my husband " dada " and even naming

> > several shapes and almost all the letters in the alphabet. He

will

> > follow one-step commands and some that require him to move to

> another

> > room. (I'm not sure what it all means, but it sounds pretty

good.)

> > However, I am concerned about the amount of actual " speech

therapy "

> > he is getting. I'm not sure how speech therapy works at this

young

> > of an age and how much is needed to get the best possible

results.

> > Most of what they do with him is OT. I am just now beginning to

> > understand the reason for the OT and how it relates to speech.

But

> > how much speech is enough? The program he is won't provide a

> > diagnosis. They " treat the child, not the disability. " But I am

> > concerned that he is receiving a broad umbrella of " treatment "

and

> > want to be sure it is enough. All the research states that early

> > intervention is so important and that if a child has apraxia,

> he/she

> > would require intense speech therapy as early as possible. He

> hasn't

> > been diagnosed with anything except a speech delay as of yet, but

I

> > don't want to lose any precious time here.

> >

> > Would anyone mind telling me about her child's diagnosis? How and

> > why did you " get the ball rolling? " Is apraxia only diagnosed by

an

> > SLP? At what age was your child diagnosed? Did you simply get a

> > referral from your PED and set up an appointment with an SLP? I

> have

> > heard it cannot be diagnosed until around age 3. Am I jumping the

> > gun here? And what sort of speech therapy do you receive? How

> > often? What do they do? Any suggestions, advice, or comments

would

> > be appreciated. Thank you so much for reading!

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi :

You may want to check out the link section for info on Vitamin E and

fish oil (Omega 3 and Omega 6).

/links

ProEFA and ProEPA from Nordic Naturals is the fish oil most use on

this board. You will find many links in the link section. The

folder is called Essential Fatty Acids - fish oil

The Vitamin E folder is also located in the link section with

archived messages from and others on how to get started.

Vitamin E folder is a must read!!

Another folder for you to look at is called Blood work/labs for

apraxia.

Lots of other good information in the link section-

Hope this helps you,

Tina

> > >Time to post this again...published through the Pediatric

Academy

> > Society Meetings in Toronto last year...presented at the " Late-

> > breaking session " . An update on nearly 200 families (many of you -

> > thanks for all the info)...has been submitted to the Pediatric

> > mettings this May 2008. Still waiting to hear if it was accepted.

> > Once published, I will post it on the site. However we are

calling

> > this " syndrome of allergy, apraxia and malabsorption " , as most of

> the

> > responding children having a combo of allergy and gut issues

> together

> > with their verbal apraxia, coordination issues (global dyspraxia)

> and

> > sensory issues. This is clearly a syndrome.

> >

> > There is more that can be done for these boys in addition to

speech

> > and occupatioinal therapy - although these are also critical

> > interventions. We need to remove the roadblock that is

contributing

> > to apraxia, and somehow omega 3, vitamin E and inflammation are

> > playing a role. (Neuro symptoms of vit E deficiency: Speech

> > difficulty, coordination problems, low tone, loss of reflexes,

loss

> > of pain sensation (high pain tolerance), poor proprioception and

> > positional sense - ie poor concept of body's position in space -

so

> > walks into walls etc). It is not a coincidence. Vit E protects

the

> > omegas from early destruction in the cell membranes.

> > Scrampled/oxidized omegas in your cell membrane will not allow

> > messages to pass through fluidly...AKA motor planning issues may

> > result. Inflammation/oxidative stress will consume anti-oxidants

> like

> > vit E...and the omegas are more vulnerable to destruction. Poor

> > absorption of nutrients at the gut level as a result of

> inflammation

> > will contribute to multiple nutritional deficiencies and compound

> the

> > problem. Gut inflammation will allow for food proteins to leak

into

> > the blood stream, and the body will react by developing food

> > allergies. It is all linked. A more comprehensive metabolic

work-

> up

> > is warranted for these children...then just an OT and speech

> > assessment. Treatable deficiencies like carnitine, zinc, fat

> soluble

> > vitamins...need to be identified and treated. Gluten sensitivity

> and

> > other food allergies (like milk, yeast -which seem common)...need

> to

> > be sought out, and dietary modifications can make a huge

> difference.

> >

> > Writing grants now - still trying to get funding to validate

this.

> > (So very busy and won't be responding to posts - just lurking

> > whenever I have a minute - which is rare, and posting when I

think

> > some info might be helpful).

> >

> >

> > Title: Impact Of Vitamin E And Omega 3 Supplementation In

Children

> > With Verbal Apraxia

> > R , MD1 and Marilyn C Agin, MD. 1Emergency

Medicine,

> > Children's Hospital & Research Center Oakland, Oakland, CA,

United

> > States.

> >

> > Background: Verbal apraxia (VA) is a neurologically-based motor

> > planning disorder of unknown etiology common in autism spectrum

> > disorders (ASD) that anecdotally responds to omega 3

> polyunsaturated

> > fatty acid (PUFA) supplementation. Vitamin (vit) E deficiency

> causes

> > symptoms that overlap those of VA. PUFAs in the cell membrane are

> > vulnerable to lipid peroxidation early destruction if vit E is

not

> > readily available, potentially leading to neurological sequelae.

> > Inflammation of the gastrointestinal tract and gluten sensitivity

> may

> > contribute to malabsorption of nutrients such as vit E and

> carnitine,

> > contributing to fatty acid metabolism dysfunction and

neurological

> > abnormalities.

> > Objective: Determine efficacy of vit E and PUFA supplementation

in

> > children with VA.

> > Design/Methods: 50 children diagnosed with VA were treated with

vit

> E

> > + PUFA. 10 of these children were known to have ASD. A celiac

> panel,

> > fat soluable vitamins, carnitine level was obtained in patients

> > having blood analyzed.

> > Results: Age ranged from 2-13 years, (majority < 5 yrs), 38/50

> were

> > boys. A history of gastrointestinal symptoms, sensory integration

> > dysfunction, low muscle tone coordination difficulties

(dyspraxia)

> > were commonly reported. 48 families (96%) anecdotally reported

> > dramatic improvements in a number of areas including speech,

> > imitation, coordination, eye contact, behavior, sensory issues

the

> > development of pain sensation. 2 children experienced new tearful

> or

> > aggressive behavior within 3 days of initiating vit E (400 IU/d)

> > without apparent benefits in speech, therapy was withdrawn

within

> a

> > week. No other adverse effects were reported. Plasma alpha

> tocopherol

> > levels varied in children tested (low in 2, high in 4 and normal

in

> > 4), however pre-treatment levels did not reflect clinical

response.

> > Low plasma carnitine was identified in 13/14 (93%) children.

> > Antigliadin IgG antibodies were high in 9/11 (82%) children

tested.

> 2

> > children reported vit D deficiency early signs of rickets.

> > Conclusions: We describe a new disease paradigm of abnormal vit

E

> > fatty acid metabolism causing neurological dysfunction in VA that

> > responds to a safe nutritional intervention. The association of

> > carnitine deficiency gluten sensitivity with VA is a novel

> > observation, suggesting that these children deserve a more

> > comprehensive metabolic work-up than what is current standard

> > practice. Larger controlled trials in apraxia autism are

warranted.

> >

> >

> >

> >

> > >

> > > [ ] We're at the beginning of our

> > journey and

> > > needing some advice

> > >

> > >

> > >

> > > Most of you moms (and dads) probably don't remember us. We've

> only

> > > posted once or twice back in July/August when we were just

> > beginning

> > > our EI journey. My son, , is almost 27 months old now and

is

> > > receiving speech/OT services once/week and and OT with an EI

> > > preschool teacher once/week. At 19-20 months he wasn't using

any

> > > words to communicate his needs, but would repeat 3-4 words when

> > > asked. He wasn't making much eye contact and would just point

and

> > > grunt when he wanted something. Many of you very nice ladies on

> > this

> > > board encouraged me to call EI and have him evaluated now,

rather

> > > than wait until his second birthday. Thank you for that

> advice!!!!

> > >

> > > I set up an appointment and had him evaluated by an

audiologist,

> > > speech therapist, and psychologist. They told us he clearly

> > > qualifies for special education services. I'm not sure I agree,

> but

> > > they said he might have a cognitive delay as well as an obvious

> > > speech delay. At the time, he wasn't following simple one-step

> > > commands or requests. For example, if I asked him to go get his

> > > shoes, he would just look around and/or ignore me. I'm not sure

> if

> > > there truly is a cognitive delay or if he was just being

> stubborn.

> > > (He has proven that he is stubborn in the past) In my mind

> though,

> > > it didn't matter because having a cognitive delay would mean he

> > > qualified for another hour of service/week. The more help

> > available,

> > > the better. right? At that age, it's so hard to know what

> > > is " normal " development and what they " should " be doing. Back

> then,

> > > I suspected he might have mild autism, but after having him

> > evaluated

> > > by a pediatric neurologist, I learned that most of his

tendencies

> > > were most likely the result of his frustration with not being

> > > understood and his limited ability to communicate. The

> neurologist

> > > said he had a developmental speech disorder and that I should

> just

> > > continue with the speech/OT. I left his office thinking " great

> > > news! will catch up. " However, then I started wondering

> about

> > > the word " disorder. " Isn't that a lifelong condition? Could he

> have

> > > given me a diagnosis for apraxia? Would he have recommended an

> SLP

> > > if there was cause for concern?

> > >

> > > I think the EI services are really helping him. By mid-October,

> he

> > > began using about 6-8 signs to communicate needs and once in a

> > while

> > > would put two of them together. Lately, he has been saying more

> > > words, calling me " a momma " and my husband " dada " and even

naming

> > > several shapes and almost all the letters in the alphabet. He

> will

> > > follow one-step commands and some that require him to move to

> > another

> > > room. (I'm not sure what it all means, but it sounds pretty

> good.)

> > > However, I am concerned about the amount of actual " speech

> therapy "

> > > he is getting. I'm not sure how speech therapy works at this

> young

> > > of an age and how much is needed to get the best possible

> results.

> > > Most of what they do with him is OT. I am just now beginning to

> > > understand the reason for the OT and how it relates to speech.

> But

> > > how much speech is enough? The program he is won't provide a

> > > diagnosis. They " treat the child, not the disability. " But I am

> > > concerned that he is receiving a broad umbrella of " treatment "

> and

> > > want to be sure it is enough. All the research states that

early

> > > intervention is so important and that if a child has apraxia,

> > he/she

> > > would require intense speech therapy as early as possible. He

> > hasn't

> > > been diagnosed with anything except a speech delay as of yet,

but

> I

> > > don't want to lose any precious time here.

> > >

> > > Would anyone mind telling me about her child's diagnosis? How

and

> > > why did you " get the ball rolling? " Is apraxia only diagnosed

by

> an

> > > SLP? At what age was your child diagnosed? Did you simply get a

> > > referral from your PED and set up an appointment with an SLP? I

> > have

> > > heard it cannot be diagnosed until around age 3. Am I jumping

the

> > > gun here? And what sort of speech therapy do you receive? How

> > > often? What do they do? Any suggestions, advice, or comments

> would

> > > be appreciated. Thank you so much for reading!

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

I wrote you offlist. Let me know if it did not go through.

I'm rambling again. But I do have a few questions regarding some of

you responses.

For those of you who eliminated milk for two weeks, did you eliminate

dairy alltogether?

What is dystharthia? I tried to Google it and got nothing.

Question about the DAN docs. Does DAN stand for Defeat Autism Now?

YES. Those of you who mentioned seeing a DAN doctor, does your child

have autism? SOME DO SOME DON'T. DANS DEPENDING ON WHO YOU GO TO,

REVIEW HISTORY AND LOOK FOR METABOLIC, ALLERGIC, VIRAL, BACTERIAL AND

ENVIRONMENTAL CULPRITS BEHIND THE SYMPTOMS OF WHAT COMPROSES A

CHILD'S LABEL, BET IT APRAXIA OR SOMETHING ELSE. TO GET TO A GOOD ONE

DO YOUR RESEARCH BUT REMEMBER TO CONSIDER PIECEMEAL MAINSTREAM DOCS

AS WELL SO YOU MISS NOTHING. A GOOD GASTROENTEROLOGIST, GENETICIST,

ENVIRONMENTAL ALLERGIST AND METABOLIC NEURO COULD HELP YOU WITH THIS

PUZZLE.

THE SYMPTOMS AND THEIR ORIGIN ARE MORE IMPORTANT THAN THE LABEL.

ALSO, A LABEL IS ONLY HELPFUL IF THE ONE GIVING IT KNOWS WHAT IT IS,

HOW IT APPLIES TO YOUR KID AND WHAT CAN HELP.

> > >Time to post this again...published through the Pediatric

Academy

> > Society Meetings in Toronto last year...presented at the " Late-

> > breaking session " . An update on nearly 200 families (many of you -

> > thanks for all the info)...has been submitted to the Pediatric

> > mettings this May 2008. Still waiting to hear if it was accepted.

> > Once published, I will post it on the site. However we are

calling

> > this " syndrome of allergy, apraxia and malabsorption " , as most of

> the

> > responding children having a combo of allergy and gut issues

> together

> > with their verbal apraxia, coordination issues (global dyspraxia)

> and

> > sensory issues. This is clearly a syndrome.

> >

> > There is more that can be done for these boys in addition to

speech

> > and occupatioinal therapy - although these are also critical

> > interventions. We need to remove the roadblock that is

contributing

> > to apraxia, and somehow omega 3, vitamin E and inflammation are

> > playing a role. (Neuro symptoms of vit E deficiency: Speech

> > difficulty, coordination problems, low tone, loss of reflexes,

loss

> > of pain sensation (high pain tolerance), poor proprioception and

> > positional sense - ie poor concept of body's position in space -

so

> > walks into walls etc). It is not a coincidence. Vit E protects

the

> > omegas from early destruction in the cell membranes.

> > Scrampled/oxidized omegas in your cell membrane will not allow

> > messages to pass through fluidly...AKA motor planning issues may

> > result. Inflammation/oxidative stress will consume anti-oxidants

> like

> > vit E...and the omegas are more vulnerable to destruction. Poor

> > absorption of nutrients at the gut level as a result of

> inflammation

> > will contribute to multiple nutritional deficiencies and compound

> the

> > problem. Gut inflammation will allow for food proteins to leak

into

> > the blood stream, and the body will react by developing food

> > allergies. It is all linked. A more comprehensive metabolic

work-

> up

> > is warranted for these children...then just an OT and speech

> > assessment. Treatable deficiencies like carnitine, zinc, fat

> soluble

> > vitamins...need to be identified and treated. Gluten sensitivity

> and

> > other food allergies (like milk, yeast -which seem common)...need

> to

> > be sought out, and dietary modifications can make a huge

> difference.

> >

> > Writing grants now - still trying to get funding to validate

this.

> > (So very busy and won't be responding to posts - just lurking

> > whenever I have a minute - which is rare, and posting when I

think

> > some info might be helpful).

> >

> >

> > Title: Impact Of Vitamin E And Omega 3 Supplementation In

Children

> > With Verbal Apraxia

> > R , MD1 and Marilyn C Agin, MD. 1Emergency

Medicine,

> > Children's Hospital & Research Center Oakland, Oakland, CA,

United

> > States.

> >

> > Background: Verbal apraxia (VA) is a neurologically-based motor

> > planning disorder of unknown etiology common in autism spectrum

> > disorders (ASD) that anecdotally responds to omega 3

> polyunsaturated

> > fatty acid (PUFA) supplementation. Vitamin (vit) E deficiency

> causes

> > symptoms that overlap those of VA. PUFAs in the cell membrane are

> > vulnerable to lipid peroxidation early destruction if vit E is

not

> > readily available, potentially leading to neurological sequelae.

> > Inflammation of the gastrointestinal tract and gluten sensitivity

> may

> > contribute to malabsorption of nutrients such as vit E and

> carnitine,

> > contributing to fatty acid metabolism dysfunction and

neurological

> > abnormalities.

> > Objective: Determine efficacy of vit E and PUFA supplementation

in

> > children with VA.

> > Design/Methods: 50 children diagnosed with VA were treated with

vit

> E

> > + PUFA. 10 of these children were known to have ASD. A celiac

> panel,

> > fat soluable vitamins, carnitine level was obtained in patients

> > having blood analyzed.

> > Results: Age ranged from 2-13 years, (majority < 5 yrs), 38/50

> were

> > boys. A history of gastrointestinal symptoms, sensory integration

> > dysfunction, low muscle tone coordination difficulties

(dyspraxia)

> > were commonly reported. 48 families (96%) anecdotally reported

> > dramatic improvements in a number of areas including speech,

> > imitation, coordination, eye contact, behavior, sensory issues

the

> > development of pain sensation. 2 children experienced new tearful

> or

> > aggressive behavior within 3 days of initiating vit E (400 IU/d)

> > without apparent benefits in speech, therapy was withdrawn

within

> a

> > week. No other adverse effects were reported. Plasma alpha

> tocopherol

> > levels varied in children tested (low in 2, high in 4 and normal

in

> > 4), however pre-treatment levels did not reflect clinical

response.

> > Low plasma carnitine was identified in 13/14 (93%) children.

> > Antigliadin IgG antibodies were high in 9/11 (82%) children

tested.

> 2

> > children reported vit D deficiency early signs of rickets.

> > Conclusions: We describe a new disease paradigm of abnormal vit

E

> > fatty acid metabolism causing neurological dysfunction in VA that

> > responds to a safe nutritional intervention. The association of

> > carnitine deficiency gluten sensitivity with VA is a novel

> > observation, suggesting that these children deserve a more

> > comprehensive metabolic work-up than what is current standard

> > practice. Larger controlled trials in apraxia autism are

warranted.

> >

> >

> >

> >

> > >

> > > [ ] We're at the beginning of our

> > journey and

> > > needing some advice

> > >

> > >

> > >

> > > Most of you moms (and dads) probably don't remember us. We've

> only

> > > posted once or twice back in July/August when we were just

> > beginning

> > > our EI journey. My son, , is almost 27 months old now and

is

> > > receiving speech/OT services once/week and and OT with an EI

> > > preschool teacher once/week. At 19-20 months he wasn't using

any

> > > words to communicate his needs, but would repeat 3-4 words when

> > > asked. He wasn't making much eye contact and would just point

and

> > > grunt when he wanted something. Many of you very nice ladies on

> > this

> > > board encouraged me to call EI and have him evaluated now,

rather

> > > than wait until his second birthday. Thank you for that

> advice!!!!

> > >

> > > I set up an appointment and had him evaluated by an

audiologist,

> > > speech therapist, and psychologist. They told us he clearly

> > > qualifies for special education services. I'm not sure I agree,

> but

> > > they said he might have a cognitive delay as well as an obvious

> > > speech delay. At the time, he wasn't following simple one-step

> > > commands or requests. For example, if I asked him to go get his

> > > shoes, he would just look around and/or ignore me. I'm not sure

> if

> > > there truly is a cognitive delay or if he was just being

> stubborn.

> > > (He has proven that he is stubborn in the past) In my mind

> though,

> > > it didn't matter because having a cognitive delay would mean he

> > > qualified for another hour of service/week. The more help

> > available,

> > > the better. right? At that age, it's so hard to know what

> > > is " normal " development and what they " should " be doing. Back

> then,

> > > I suspected he might have mild autism, but after having him

> > evaluated

> > > by a pediatric neurologist, I learned that most of his

tendencies

> > > were most likely the result of his frustration with not being

> > > understood and his limited ability to communicate. The

> neurologist

> > > said he had a developmental speech disorder and that I should

> just

> > > continue with the speech/OT. I left his office thinking " great

> > > news! will catch up. " However, then I started wondering

> about

> > > the word " disorder. " Isn't that a lifelong condition? Could he

> have

> > > given me a diagnosis for apraxia? Would he have recommended an

> SLP

> > > if there was cause for concern?

> > >

> > > I think the EI services are really helping him. By mid-October,

> he

> > > began using about 6-8 signs to communicate needs and once in a

> > while

> > > would put two of them together. Lately, he has been saying more

> > > words, calling me " a momma " and my husband " dada " and even

naming

> > > several shapes and almost all the letters in the alphabet. He

> will

> > > follow one-step commands and some that require him to move to

> > another

> > > room. (I'm not sure what it all means, but it sounds pretty

> good.)

> > > However, I am concerned about the amount of actual " speech

> therapy "

> > > he is getting. I'm not sure how speech therapy works at this

> young

> > > of an age and how much is needed to get the best possible

> results.

> > > Most of what they do with him is OT. I am just now beginning to

> > > understand the reason for the OT and how it relates to speech.

> But

> > > how much speech is enough? The program he is won't provide a

> > > diagnosis. They " treat the child, not the disability. " But I am

> > > concerned that he is receiving a broad umbrella of " treatment "

> and

> > > want to be sure it is enough. All the research states that

early

> > > intervention is so important and that if a child has apraxia,

> > he/she

> > > would require intense speech therapy as early as possible. He

> > hasn't

> > > been diagnosed with anything except a speech delay as of yet,

but

> I

> > > don't want to lose any precious time here.

> > >

> > > Would anyone mind telling me about her child's diagnosis? How

and

> > > why did you " get the ball rolling? " Is apraxia only diagnosed

by

> an

> > > SLP? At what age was your child diagnosed? Did you simply get a

> > > referral from your PED and set up an appointment with an SLP? I

> > have

> > > heard it cannot be diagnosed until around age 3. Am I jumping

the

> > > gun here? And what sort of speech therapy do you receive? How

> > > often? What do they do? Any suggestions, advice, or comments

> would

> > > be appreciated. Thank you so much for reading!

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Beyond fish oil and e, some nutritionists who have worked with

learning delayed kids with different labels are Kely Dorfman and

Payne. Colleen also had some luck with Len & Joe as part of

her overall plan with her son developed by Dorfman, Lan and Joe

and her DAN after testing.

Some of the things these folks endorse are choline and DMG which

address the liver. There was some discussion about the good the bad

and the ugly of these things so it is important to get individualized

care for your child, as she has and just not assume one size fits

all. Depending on the origin of the delay your needs may be

different.

> > > >Time to post this again...published through the Pediatric

> Academy

> > > Society Meetings in Toronto last year...presented at the " Late-

> > > breaking session " . An update on nearly 200 families (many of

you -

>

> > > thanks for all the info)...has been submitted to the Pediatric

> > > mettings this May 2008. Still waiting to hear if it was

accepted.

> > > Once published, I will post it on the site. However we are

> calling

> > > this " syndrome of allergy, apraxia and malabsorption " , as most

of

> > the

> > > responding children having a combo of allergy and gut issues

> > together

> > > with their verbal apraxia, coordination issues (global

dyspraxia)

> > and

> > > sensory issues. This is clearly a syndrome.

> > >

> > > There is more that can be done for these boys in addition to

> speech

> > > and occupatioinal therapy - although these are also critical

> > > interventions. We need to remove the roadblock that is

> contributing

> > > to apraxia, and somehow omega 3, vitamin E and inflammation are

> > > playing a role. (Neuro symptoms of vit E deficiency: Speech

> > > difficulty, coordination problems, low tone, loss of reflexes,

> loss

> > > of pain sensation (high pain tolerance), poor proprioception

and

> > > positional sense - ie poor concept of body's position in space -

> so

> > > walks into walls etc). It is not a coincidence. Vit E protects

> the

> > > omegas from early destruction in the cell membranes.

> > > Scrampled/oxidized omegas in your cell membrane will not allow

> > > messages to pass through fluidly...AKA motor planning issues

may

> > > result. Inflammation/oxidative stress will consume anti-

oxidants

> > like

> > > vit E...and the omegas are more vulnerable to destruction. Poor

> > > absorption of nutrients at the gut level as a result of

> > inflammation

> > > will contribute to multiple nutritional deficiencies and

compound

> > the

> > > problem. Gut inflammation will allow for food proteins to leak

> into

> > > the blood stream, and the body will react by developing food

> > > allergies. It is all linked. A more comprehensive metabolic

> work-

> > up

> > > is warranted for these children...then just an OT and speech

> > > assessment. Treatable deficiencies like carnitine, zinc, fat

> > soluble

> > > vitamins...need to be identified and treated. Gluten

sensitivity

> > and

> > > other food allergies (like milk, yeast -which seem

common)...need

> > to

> > > be sought out, and dietary modifications can make a huge

> > difference.

> > >

> > > Writing grants now - still trying to get funding to validate

> this.

> > > (So very busy and won't be responding to posts - just lurking

> > > whenever I have a minute - which is rare, and posting when I

> think

> > > some info might be helpful).

> > >

> > >

> > > Title: Impact Of Vitamin E And Omega 3 Supplementation In

> Children

> > > With Verbal Apraxia

> > > R , MD1 and Marilyn C Agin, MD. 1Emergency

> Medicine,

> > > Children's Hospital & Research Center Oakland, Oakland, CA,

> United

> > > States.

> > >

> > > Background: Verbal apraxia (VA) is a neurologically-based motor

> > > planning disorder of unknown etiology common in autism spectrum

> > > disorders (ASD) that anecdotally responds to omega 3

> > polyunsaturated

> > > fatty acid (PUFA) supplementation. Vitamin (vit) E deficiency

> > causes

> > > symptoms that overlap those of VA. PUFAs in the cell membrane

are

> > > vulnerable to lipid peroxidation early destruction if vit E is

> not

> > > readily available, potentially leading to neurological

sequelae.

> > > Inflammation of the gastrointestinal tract and gluten

sensitivity

> > may

> > > contribute to malabsorption of nutrients such as vit E and

> > carnitine,

> > > contributing to fatty acid metabolism dysfunction and

> neurological

> > > abnormalities.

> > > Objective: Determine efficacy of vit E and PUFA supplementation

> in

> > > children with VA.

> > > Design/Methods: 50 children diagnosed with VA were treated with

> vit

> > E

> > > + PUFA. 10 of these children were known to have ASD. A celiac

> > panel,

> > > fat soluable vitamins, carnitine level was obtained in

patients

> > > having blood analyzed.

> > > Results: Age ranged from 2-13 years, (majority < 5 yrs), 38/50

> > were

> > > boys. A history of gastrointestinal symptoms, sensory

integration

> > > dysfunction, low muscle tone coordination difficulties

> (dyspraxia)

> > > were commonly reported. 48 families (96%) anecdotally reported

> > > dramatic improvements in a number of areas including speech,

> > > imitation, coordination, eye contact, behavior, sensory issues

> the

> > > development of pain sensation. 2 children experienced new

tearful

> > or

> > > aggressive behavior within 3 days of initiating vit E (400

IU/d)

> > > without apparent benefits in speech, therapy was withdrawn

> within

> > a

> > > week. No other adverse effects were reported. Plasma alpha

> > tocopherol

> > > levels varied in children tested (low in 2, high in 4 and

normal

> in

> > > 4), however pre-treatment levels did not reflect clinical

> response.

> > > Low plasma carnitine was identified in 13/14 (93%) children.

> > > Antigliadin IgG antibodies were high in 9/11 (82%) children

> tested.

> > 2

> > > children reported vit D deficiency early signs of rickets.

> > > Conclusions: We describe a new disease paradigm of abnormal vit

> E

> > > fatty acid metabolism causing neurological dysfunction in VA

that

> > > responds to a safe nutritional intervention. The association of

> > > carnitine deficiency gluten sensitivity with VA is a novel

> > > observation, suggesting that these children deserve a more

> > > comprehensive metabolic work-up than what is current standard

> > > practice. Larger controlled trials in apraxia autism are

> warranted.

> > >

> > >

> > >

> > >

> > > >

> > > > [ ] We're at the beginning of our

> > > journey and

> > > > needing some advice

> > > >

> > > >

> > > >

> > > > Most of you moms (and dads) probably don't remember us. We've

> > only

> > > > posted once or twice back in July/August when we were just

> > > beginning

> > > > our EI journey. My son, , is almost 27 months old now and

> is

> > > > receiving speech/OT services once/week and and OT with an EI

> > > > preschool teacher once/week. At 19-20 months he wasn't using

> any

> > > > words to communicate his needs, but would repeat 3-4 words

when

> > > > asked. He wasn't making much eye contact and would just point

> and

> > > > grunt when he wanted something. Many of you very nice ladies

on

> > > this

> > > > board encouraged me to call EI and have him evaluated now,

> rather

> > > > than wait until his second birthday. Thank you for that

> > advice!!!!

> > > >

> > > > I set up an appointment and had him evaluated by an

> audiologist,

> > > > speech therapist, and psychologist. They told us he clearly

> > > > qualifies for special education services. I'm not sure I

agree,

> > but

> > > > they said he might have a cognitive delay as well as an

obvious

> > > > speech delay. At the time, he wasn't following simple one-

step

> > > > commands or requests. For example, if I asked him to go get

his

> > > > shoes, he would just look around and/or ignore me. I'm not

sure

> > if

> > > > there truly is a cognitive delay or if he was just being

> > stubborn.

> > > > (He has proven that he is stubborn in the past) In my mind

> > though,

> > > > it didn't matter because having a cognitive delay would mean

he

> > > > qualified for another hour of service/week. The more help

> > > available,

> > > > the better. right? At that age, it's so hard to know what

> > > > is " normal " development and what they " should " be doing. Back

> > then,

> > > > I suspected he might have mild autism, but after having him

> > > evaluated

> > > > by a pediatric neurologist, I learned that most of his

> tendencies

> > > > were most likely the result of his frustration with not being

> > > > understood and his limited ability to communicate. The

> > neurologist

> > > > said he had a developmental speech disorder and that I should

> > just

> > > > continue with the speech/OT. I left his office

thinking " great

> > > > news! will catch up. " However, then I started wondering

> > about

> > > > the word " disorder. " Isn't that a lifelong condition? Could

he

> > have

> > > > given me a diagnosis for apraxia? Would he have recommended

an

> > SLP

> > > > if there was cause for concern?

> > > >

> > > > I think the EI services are really helping him. By mid-

October,

> > he

> > > > began using about 6-8 signs to communicate needs and once in

a

> > > while

> > > > would put two of them together. Lately, he has been saying

more

> > > > words, calling me " a momma " and my husband " dada " and even

> naming

> > > > several shapes and almost all the letters in the alphabet. He

> > will

> > > > follow one-step commands and some that require him to move to

> > > another

> > > > room. (I'm not sure what it all means, but it sounds pretty

> > good.)

> > > > However, I am concerned about the amount of actual " speech

> > therapy "

> > > > he is getting. I'm not sure how speech therapy works at this

> > young

> > > > of an age and how much is needed to get the best possible

> > results.

> > > > Most of what they do with him is OT. I am just now beginning

to

> > > > understand the reason for the OT and how it relates to

speech.

> > But

> > > > how much speech is enough? The program he is won't provide a

> > > > diagnosis. They " treat the child, not the disability. " But I

am

> > > > concerned that he is receiving a broad umbrella

of " treatment "

> > and

> > > > want to be sure it is enough. All the research states that

> early

> > > > intervention is so important and that if a child has apraxia,

> > > he/she

> > > > would require intense speech therapy as early as possible. He

> > > hasn't

> > > > been diagnosed with anything except a speech delay as of yet,

> but

> > I

> > > > don't want to lose any precious time here.

> > > >

> > > > Would anyone mind telling me about her child's diagnosis? How

> and

> > > > why did you " get the ball rolling? " Is apraxia only diagnosed

> by

> > an

> > > > SLP? At what age was your child diagnosed? Did you simply get

a

> > > > referral from your PED and set up an appointment with an SLP?

I

> > > have

> > > > heard it cannot be diagnosed until around age 3. Am I jumping

> the

> > > > gun here? And what sort of speech therapy do you receive? How

> > > > often? What do they do? Any suggestions, advice, or comments

> > would

> > > > be appreciated. Thank you so much for reading!

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

,

Start by reading The Late Talker. Period. This is what I did to start:

1. Start a journal - your child's histrory. i.e. ear infections, antibotics?

2. Continue to Take Notes - not about every little thing but changes over

the next 3 weeks.

3. Start Omegas - NN Complete 3, 6, 9 w/ borage Oil 1 - 2x per day (check

folders on this board)

4. Note Changes

5. Start E after a couple of weeks 400 iu of natural E - note changes - you

may see some aggressive behavior. Dont give up it will calm down. Try and

move up to 800 iu if you notice changes. Behavior will change again possibly

but will come back.

6. Remove dairy for 3 weeks. Like Janice says no milk means no milk or milk

products or food with milk in it. Remember to suppliment with calcium and

magnesium 400. They need 1,000 mg per day

7.Call Dorman www.Dorfman.com

8. Call a DAN! Doc - spend the money do the testing. Find the gaps in

minerals it is imperative you do this. They will do some detox stuff

9. Clean up the diet: organic fruit, veggies and meat - as much as you can.

10. clean air in home and reverse osmois water - the stuff you can control

Liz says.

I did this starting in august 2007. we had 6 approx. My son is doing great.

It has worked for him. We have short sentences. We still have a way to go

and I am going to post his metals testing shortly. Dont get overwhelmed it

is a step by step process. Keep your eye on the ball. We are here to help.

Colleen

Mother of Charlie 30 months

[ ] We're at the beginning of our

> journey and

> > needing some advice

> >

> >

> >

> > Most of you moms (and dads) probably don't remember us. We've

only

> > posted once or twice back in July/August when we were just

> beginning

> > our EI journey. My son, , is almost 27 months old now and is

> > receiving speech/OT services once/week and and OT with an EI

> > preschool teacher once/week. At 19-20 months he wasn't using any

> > words to communicate his needs, but would repeat 3-4 words when

> > asked. He wasn't making much eye contact and would just point and

> > grunt when he wanted something. Many of you very nice ladies on

> this

> > board encouraged me to call EI and have him evaluated now, rather

> > than wait until his second birthday. Thank you for that

advice!!!!

> >

> > I set up an appointment and had him evaluated by an audiologist,

> > speech therapist, and psychologist. They told us he clearly

> > qualifies for special education services. I'm not sure I agree,

but

> > they said he might have a cognitive delay as well as an obvious

> > speech delay. At the time, he wasn't following simple one-step

> > commands or requests. For example, if I asked him to go get his

> > shoes, he would just look around and/or ignore me. I'm not sure

if

> > there truly is a cognitive delay or if he was just being

stubborn.

> > (He has proven that he is stubborn in the past) In my mind

though,

> > it didn't matter because having a cognitive delay would mean he

> > qualified for another hour of service/week. The more help

> available,

> > the better. right? At that age, it's so hard to know what

> > is " normal " development and what they " should " be doing. Back

then,

> > I suspected he might have mild autism, but after having him

> evaluated

> > by a pediatric neurologist, I learned that most of his tendencies

> > were most likely the result of his frustration with not being

> > understood and his limited ability to communicate. The

neurologist

> > said he had a developmental speech disorder and that I should

just

> > continue with the speech/OT. I left his office thinking " great

> > news! will catch up. " However, then I started wondering

about

> > the word " disorder. " Isn't that a lifelong condition? Could he

have

> > given me a diagnosis for apraxia? Would he have recommended an

SLP

> > if there was cause for concern?

> >

> > I think the EI services are really helping him. By mid-October,

he

> > began using about 6-8 signs to communicate needs and once in a

> while

> > would put two of them together. Lately, he has been saying more

> > words, calling me " a momma " and my husband " dada " and even naming

> > several shapes and almost all the letters in the alphabet. He

will

> > follow one-step commands and some that require him to move to

> another

> > room. (I'm not sure what it all means, but it sounds pretty

good.)

> > However, I am concerned about the amount of actual " speech

therapy "

> > he is getting. I'm not sure how speech therapy works at this

young

> > of an age and how much is needed to get the best possible

results.

> > Most of what they do with him is OT. I am just now beginning to

> > understand the reason for the OT and how it relates to speech.

But

> > how much speech is enough? The program he is won't provide a

> > diagnosis. They " treat the child, not the disability. " But I am

> > concerned that he is receiving a broad umbrella of " treatment "

and

> > want to be sure it is enough. All the research states that early

> > intervention is so important and that if a child has apraxia,

> he/she

> > would require intense speech therapy as early as possible. He

> hasn't

> > been diagnosed with anything except a speech delay as of yet, but

I

> > don't want to lose any precious time here.

> >

> > Would anyone mind telling me about her child's diagnosis? How and

> > why did you " get the ball rolling? " Is apraxia only diagnosed by

an

> > SLP? At what age was your child diagnosed? Did you simply get a

> > referral from your PED and set up an appointment with an SLP? I

> have

> > heard it cannot be diagnosed until around age 3. Am I jumping the

> > gun here? And what sort of speech therapy do you receive? How

> > often? What do they do? Any suggestions, advice, or comments

would

> > be appreciated. Thank you so much for reading!

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Thank you so much! This is extremely helpful! Especially for a

beginner like me who has no idea where to begin. Thank you, thank

you, thank you!!!

> > >Time to post this again...published through the Pediatric

Academy

> > Society Meetings in Toronto last year...presented at the " Late-

> > breaking session " . An update on nearly 200 families (many of you -

> > thanks for all the info)...has been submitted to the Pediatric

> > mettings this May 2008. Still waiting to hear if it was accepted.

> > Once published, I will post it on the site. However we are

calling

> > this " syndrome of allergy, apraxia and malabsorption " , as most of

> the

> > responding children having a combo of allergy and gut issues

> together

> > with their verbal apraxia, coordination issues (global dyspraxia)

> and

> > sensory issues. This is clearly a syndrome.

> >

> > There is more that can be done for these boys in addition to

speech

> > and occupatioinal therapy - although these are also critical

> > interventions. We need to remove the roadblock that is

contributing

> > to apraxia, and somehow omega 3, vitamin E and inflammation are

> > playing a role. (Neuro symptoms of vit E deficiency: Speech

> > difficulty, coordination problems, low tone, loss of reflexes,

loss

> > of pain sensation (high pain tolerance), poor proprioception and

> > positional sense - ie poor concept of body's position in space -

so

> > walks into walls etc). It is not a coincidence. Vit E protects

the

> > omegas from early destruction in the cell membranes.

> > Scrampled/oxidized omegas in your cell membrane will not allow

> > messages to pass through fluidly...AKA motor planning issues may

> > result. Inflammation/oxidative stress will consume anti-oxidants

> like

> > vit E...and the omegas are more vulnerable to destruction. Poor

> > absorption of nutrients at the gut level as a result of

> inflammation

> > will contribute to multiple nutritional deficiencies and compound

> the

> > problem. Gut inflammation will allow for food proteins to leak

into

> > the blood stream, and the body will react by developing food

> > allergies. It is all linked. A more comprehensive metabolic work-

> up

> > is warranted for these children...then just an OT and speech

> > assessment. Treatable deficiencies like carnitine, zinc, fat

> soluble

> > vitamins...need to be identified and treated. Gluten sensitivity

> and

> > other food allergies (like milk, yeast -which seem common)...need

> to

> > be sought out, and dietary modifications can make a huge

> difference.

> >

> > Writing grants now - still trying to get funding to validate

this.

> > (So very busy and won't be responding to posts - just lurking

> > whenever I have a minute - which is rare, and posting when I

think

> > some info might be helpful).

> >

> >

> > Title: Impact Of Vitamin E And Omega 3 Supplementation In

Children

> > With Verbal Apraxia

> > R , MD1 and Marilyn C Agin, MD. 1Emergency

Medicine,

> > Children's Hospital & Research Center Oakland, Oakland, CA,

United

> > States.

> >

> > Background: Verbal apraxia (VA) is a neurologically-based motor

> > planning disorder of unknown etiology common in autism spectrum

> > disorders (ASD) that anecdotally responds to omega 3

> polyunsaturated

> > fatty acid (PUFA) supplementation. Vitamin (vit) E deficiency

> causes

> > symptoms that overlap those of VA. PUFAs in the cell membrane are

> > vulnerable to lipid peroxidation early destruction if vit E is

not

> > readily available, potentially leading to neurological sequelae.

> > Inflammation of the gastrointestinal tract and gluten sensitivity

> may

> > contribute to malabsorption of nutrients such as vit E and

> carnitine,

> > contributing to fatty acid metabolism dysfunction and

neurological

> > abnormalities.

> > Objective: Determine efficacy of vit E and PUFA supplementation

in

> > children with VA.

> > Design/Methods: 50 children diagnosed with VA were treated with

vit

> E

> > + PUFA. 10 of these children were known to have ASD. A celiac

> panel,

> > fat soluable vitamins, carnitine level was obtained in patients

> > having blood analyzed.

> > Results: Age ranged from 2-13 years, (majority < 5 yrs), 38/50

> were

> > boys. A history of gastrointestinal symptoms, sensory integration

> > dysfunction, low muscle tone coordination difficulties

(dyspraxia)

> > were commonly reported. 48 families (96%) anecdotally reported

> > dramatic improvements in a number of areas including speech,

> > imitation, coordination, eye contact, behavior, sensory issues

the

> > development of pain sensation. 2 children experienced new tearful

> or

> > aggressive behavior within 3 days of initiating vit E (400 IU/d)

> > without apparent benefits in speech, therapy was withdrawn within

> a

> > week. No other adverse effects were reported. Plasma alpha

> tocopherol

> > levels varied in children tested (low in 2, high in 4 and normal

in

> > 4), however pre-treatment levels did not reflect clinical

response.

> > Low plasma carnitine was identified in 13/14 (93%) children.

> > Antigliadin IgG antibodies were high in 9/11 (82%) children

tested.

> 2

> > children reported vit D deficiency early signs of rickets.

> > Conclusions: We describe a new disease paradigm of abnormal vit E

> > fatty acid metabolism causing neurological dysfunction in VA that

> > responds to a safe nutritional intervention. The association of

> > carnitine deficiency gluten sensitivity with VA is a novel

> > observation, suggesting that these children deserve a more

> > comprehensive metabolic work-up than what is current standard

> > practice. Larger controlled trials in apraxia autism are

warranted.

> >

> >

> >

> >

> > >

> > > [ ] We're at the beginning of our

> > journey and

> > > needing some advice

> > >

> > >

> > >

> > > Most of you moms (and dads) probably don't remember us. We've

> only

> > > posted once or twice back in July/August when we were just

> > beginning

> > > our EI journey. My son, , is almost 27 months old now and

is

> > > receiving speech/OT services once/week and and OT with an EI

> > > preschool teacher once/week. At 19-20 months he wasn't using

any

> > > words to communicate his needs, but would repeat 3-4 words when

> > > asked. He wasn't making much eye contact and would just point

and

> > > grunt when he wanted something. Many of you very nice ladies on

> > this

> > > board encouraged me to call EI and have him evaluated now,

rather

> > > than wait until his second birthday. Thank you for that

> advice!!!!

> > >

> > > I set up an appointment and had him evaluated by an

audiologist,

> > > speech therapist, and psychologist. They told us he clearly

> > > qualifies for special education services. I'm not sure I agree,

> but

> > > they said he might have a cognitive delay as well as an obvious

> > > speech delay. At the time, he wasn't following simple one-step

> > > commands or requests. For example, if I asked him to go get his

> > > shoes, he would just look around and/or ignore me. I'm not sure

> if

> > > there truly is a cognitive delay or if he was just being

> stubborn.

> > > (He has proven that he is stubborn in the past) In my mind

> though,

> > > it didn't matter because having a cognitive delay would mean he

> > > qualified for another hour of service/week. The more help

> > available,

> > > the better. right? At that age, it's so hard to know what

> > > is " normal " development and what they " should " be doing. Back

> then,

> > > I suspected he might have mild autism, but after having him

> > evaluated

> > > by a pediatric neurologist, I learned that most of his

tendencies

> > > were most likely the result of his frustration with not being

> > > understood and his limited ability to communicate. The

> neurologist

> > > said he had a developmental speech disorder and that I should

> just

> > > continue with the speech/OT. I left his office thinking " great

> > > news! will catch up. " However, then I started wondering

> about

> > > the word " disorder. " Isn't that a lifelong condition? Could he

> have

> > > given me a diagnosis for apraxia? Would he have recommended an

> SLP

> > > if there was cause for concern?

> > >

> > > I think the EI services are really helping him. By mid-October,

> he

> > > began using about 6-8 signs to communicate needs and once in a

> > while

> > > would put two of them together. Lately, he has been saying more

> > > words, calling me " a momma " and my husband " dada " and even

naming

> > > several shapes and almost all the letters in the alphabet. He

> will

> > > follow one-step commands and some that require him to move to

> > another

> > > room. (I'm not sure what it all means, but it sounds pretty

> good.)

> > > However, I am concerned about the amount of actual " speech

> therapy "

> > > he is getting. I'm not sure how speech therapy works at this

> young

> > > of an age and how much is needed to get the best possible

> results.

> > > Most of what they do with him is OT. I am just now beginning to

> > > understand the reason for the OT and how it relates to speech.

> But

> > > how much speech is enough? The program he is won't provide a

> > > diagnosis. They " treat the child, not the disability. " But I am

> > > concerned that he is receiving a broad umbrella of " treatment "

> and

> > > want to be sure it is enough. All the research states that

early

> > > intervention is so important and that if a child has apraxia,

> > he/she

> > > would require intense speech therapy as early as possible. He

> > hasn't

> > > been diagnosed with anything except a speech delay as of yet,

but

> I

> > > don't want to lose any precious time here.

> > >

> > > Would anyone mind telling me about her child's diagnosis? How

and

> > > why did you " get the ball rolling? " Is apraxia only diagnosed

by

> an

> > > SLP? At what age was your child diagnosed? Did you simply get a

> > > referral from your PED and set up an appointment with an SLP? I

> > have

> > > heard it cannot be diagnosed until around age 3. Am I jumping

the

> > > gun here? And what sort of speech therapy do you receive? How

> > > often? What do they do? Any suggestions, advice, or comments

> would

> > > be appreciated. Thank you so much for reading!

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

E is a beautiful thing but I would get a plasma level first and

coagulation labs as outlined in the folder on this board.

> > > >Time to post this again...published through the Pediatric

> Academy

> > > Society Meetings in Toronto last year...presented at the " Late-

> > > breaking session " . An update on nearly 200 families (many of

you -

>

> > > thanks for all the info)...has been submitted to the Pediatric

> > > mettings this May 2008. Still waiting to hear if it was

accepted.

> > > Once published, I will post it on the site. However we are

> calling

> > > this " syndrome of allergy, apraxia and malabsorption " , as most

of

> > the

> > > responding children having a combo of allergy and gut issues

> > together

> > > with their verbal apraxia, coordination issues (global

dyspraxia)

> > and

> > > sensory issues. This is clearly a syndrome.

> > >

> > > There is more that can be done for these boys in addition to

> speech

> > > and occupatioinal therapy - although these are also critical

> > > interventions. We need to remove the roadblock that is

> contributing

> > > to apraxia, and somehow omega 3, vitamin E and inflammation are

> > > playing a role. (Neuro symptoms of vit E deficiency: Speech

> > > difficulty, coordination problems, low tone, loss of reflexes,

> loss

> > > of pain sensation (high pain tolerance), poor proprioception

and

> > > positional sense - ie poor concept of body's position in space -

> so

> > > walks into walls etc). It is not a coincidence. Vit E protects

> the

> > > omegas from early destruction in the cell membranes.

> > > Scrampled/oxidized omegas in your cell membrane will not allow

> > > messages to pass through fluidly...AKA motor planning issues

may

> > > result. Inflammation/oxidative stress will consume anti-

oxidants

> > like

> > > vit E...and the omegas are more vulnerable to destruction. Poor

> > > absorption of nutrients at the gut level as a result of

> > inflammation

> > > will contribute to multiple nutritional deficiencies and

compound

> > the

> > > problem. Gut inflammation will allow for food proteins to leak

> into

> > > the blood stream, and the body will react by developing food

> > > allergies. It is all linked. A more comprehensive metabolic

work-

> > up

> > > is warranted for these children...then just an OT and speech

> > > assessment. Treatable deficiencies like carnitine, zinc, fat

> > soluble

> > > vitamins...need to be identified and treated. Gluten

sensitivity

> > and

> > > other food allergies (like milk, yeast -which seem

common)...need

> > to

> > > be sought out, and dietary modifications can make a huge

> > difference.

> > >

> > > Writing grants now - still trying to get funding to validate

> this.

> > > (So very busy and won't be responding to posts - just lurking

> > > whenever I have a minute - which is rare, and posting when I

> think

> > > some info might be helpful).

> > >

> > >

> > > Title: Impact Of Vitamin E And Omega 3 Supplementation In

> Children

> > > With Verbal Apraxia

> > > R , MD1 and Marilyn C Agin, MD. 1Emergency

> Medicine,

> > > Children's Hospital & Research Center Oakland, Oakland, CA,

> United

> > > States.

> > >

> > > Background: Verbal apraxia (VA) is a neurologically-based motor

> > > planning disorder of unknown etiology common in autism spectrum

> > > disorders (ASD) that anecdotally responds to omega 3

> > polyunsaturated

> > > fatty acid (PUFA) supplementation. Vitamin (vit) E deficiency

> > causes

> > > symptoms that overlap those of VA. PUFAs in the cell membrane

are

> > > vulnerable to lipid peroxidation early destruction if vit E is

> not

> > > readily available, potentially leading to neurological

sequelae.

> > > Inflammation of the gastrointestinal tract and gluten

sensitivity

> > may

> > > contribute to malabsorption of nutrients such as vit E and

> > carnitine,

> > > contributing to fatty acid metabolism dysfunction and

> neurological

> > > abnormalities.

> > > Objective: Determine efficacy of vit E and PUFA supplementation

> in

> > > children with VA.

> > > Design/Methods: 50 children diagnosed with VA were treated with

> vit

> > E

> > > + PUFA. 10 of these children were known to have ASD. A celiac

> > panel,

> > > fat soluable vitamins, carnitine level was obtained in patients

> > > having blood analyzed.

> > > Results: Age ranged from 2-13 years, (majority < 5 yrs), 38/50

> > were

> > > boys. A history of gastrointestinal symptoms, sensory

integration

> > > dysfunction, low muscle tone coordination difficulties

> (dyspraxia)

> > > were commonly reported. 48 families (96%) anecdotally reported

> > > dramatic improvements in a number of areas including speech,

> > > imitation, coordination, eye contact, behavior, sensory issues

> the

> > > development of pain sensation. 2 children experienced new

tearful

> > or

> > > aggressive behavior within 3 days of initiating vit E (400

IU/d)

> > > without apparent benefits in speech, therapy was withdrawn

within

> > a

> > > week. No other adverse effects were reported. Plasma alpha

> > tocopherol

> > > levels varied in children tested (low in 2, high in 4 and

normal

> in

> > > 4), however pre-treatment levels did not reflect clinical

> response.

> > > Low plasma carnitine was identified in 13/14 (93%) children.

> > > Antigliadin IgG antibodies were high in 9/11 (82%) children

> tested.

> > 2

> > > children reported vit D deficiency early signs of rickets.

> > > Conclusions: We describe a new disease paradigm of abnormal vit

E

> > > fatty acid metabolism causing neurological dysfunction in VA

that

> > > responds to a safe nutritional intervention. The association of

> > > carnitine deficiency gluten sensitivity with VA is a novel

> > > observation, suggesting that these children deserve a more

> > > comprehensive metabolic work-up than what is current standard

> > > practice. Larger controlled trials in apraxia autism are

> warranted.

> > >

> > >

> > >

> > >

> > > >

> > > > [ ] We're at the beginning of our

> > > journey and

> > > > needing some advice

> > > >

> > > >

> > > >

> > > > Most of you moms (and dads) probably don't remember us. We've

> > only

> > > > posted once or twice back in July/August when we were just

> > > beginning

> > > > our EI journey. My son, , is almost 27 months old now and

> is

> > > > receiving speech/OT services once/week and and OT with an EI

> > > > preschool teacher once/week. At 19-20 months he wasn't using

> any

> > > > words to communicate his needs, but would repeat 3-4 words

when

> > > > asked. He wasn't making much eye contact and would just point

> and

> > > > grunt when he wanted something. Many of you very nice ladies

on

> > > this

> > > > board encouraged me to call EI and have him evaluated now,

> rather

> > > > than wait until his second birthday. Thank you for that

> > advice!!!!

> > > >

> > > > I set up an appointment and had him evaluated by an

> audiologist,

> > > > speech therapist, and psychologist. They told us he clearly

> > > > qualifies for special education services. I'm not sure I

agree,

> > but

> > > > they said he might have a cognitive delay as well as an

obvious

> > > > speech delay. At the time, he wasn't following simple one-

step

> > > > commands or requests. For example, if I asked him to go get

his

> > > > shoes, he would just look around and/or ignore me. I'm not

sure

> > if

> > > > there truly is a cognitive delay or if he was just being

> > stubborn.

> > > > (He has proven that he is stubborn in the past) In my mind

> > though,

> > > > it didn't matter because having a cognitive delay would mean

he

> > > > qualified for another hour of service/week. The more help

> > > available,

> > > > the better. right? At that age, it's so hard to know what

> > > > is " normal " development and what they " should " be doing. Back

> > then,

> > > > I suspected he might have mild autism, but after having him

> > > evaluated

> > > > by a pediatric neurologist, I learned that most of his

> tendencies

> > > > were most likely the result of his frustration with not being

> > > > understood and his limited ability to communicate. The

> > neurologist

> > > > said he had a developmental speech disorder and that I should

> > just

> > > > continue with the speech/OT. I left his office

thinking " great

> > > > news! will catch up. " However, then I started wondering

> > about

> > > > the word " disorder. " Isn't that a lifelong condition? Could

he

> > have

> > > > given me a diagnosis for apraxia? Would he have recommended

an

> > SLP

> > > > if there was cause for concern?

> > > >

> > > > I think the EI services are really helping him. By mid-

October,

> > he

> > > > began using about 6-8 signs to communicate needs and once in

a

> > > while

> > > > would put two of them together. Lately, he has been saying

more

> > > > words, calling me " a momma " and my husband " dada " and even

> naming

> > > > several shapes and almost all the letters in the alphabet. He

> > will

> > > > follow one-step commands and some that require him to move to

> > > another

> > > > room. (I'm not sure what it all means, but it sounds pretty

> > good.)

> > > > However, I am concerned about the amount of actual " speech

> > therapy "

> > > > he is getting. I'm not sure how speech therapy works at this

> > young

> > > > of an age and how much is needed to get the best possible

> > results.

> > > > Most of what they do with him is OT. I am just now beginning

to

> > > > understand the reason for the OT and how it relates to

speech.

> > But

> > > > how much speech is enough? The program he is won't provide a

> > > > diagnosis. They " treat the child, not the disability. " But I

am

> > > > concerned that he is receiving a broad umbrella

of " treatment "

> > and

> > > > want to be sure it is enough. All the research states that

> early

> > > > intervention is so important and that if a child has apraxia,

> > > he/she

> > > > would require intense speech therapy as early as possible. He

> > > hasn't

> > > > been diagnosed with anything except a speech delay as of yet,

> but

> > I

> > > > don't want to lose any precious time here.

> > > >

> > > > Would anyone mind telling me about her child's diagnosis? How

> and

> > > > why did you " get the ball rolling? " Is apraxia only diagnosed

> by

> > an

> > > > SLP? At what age was your child diagnosed? Did you simply get

a

> > > > referral from your PED and set up an appointment with an SLP?

I

> > > have

> > > > heard it cannot be diagnosed until around age 3. Am I jumping

> the

> > > > gun here? And what sort of speech therapy do you receive? How

> > > > often? What do they do? Any suggestions, advice, or comments

> > would

> > > > be appreciated. Thank you so much for reading!

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Colleen:

Thanks for laying this out for me...I'm on my way to get the book and

our way to help! thanks!!!

> > > >Time to post this again...published through the Pediatric

> Academy

> > > Society Meetings in Toronto last year...presented at the " Late-

> > > breaking session " . An update on nearly 200 families (many of

you -

>

> > > thanks for all the info)...has been submitted to the Pediatric

> > > mettings this May 2008. Still waiting to hear if it was

accepted.

> > > Once published, I will post it on the site. However we are

> calling

> > > this " syndrome of allergy, apraxia and malabsorption " , as most

of

> > the

> > > responding children having a combo of allergy and gut issues

> > together

> > > with their verbal apraxia, coordination issues (global

dyspraxia)

> > and

> > > sensory issues. This is clearly a syndrome.

> > >

> > > There is more that can be done for these boys in addition to

> speech

> > > and occupatioinal therapy - although these are also critical

> > > interventions. We need to remove the roadblock that is

> contributing

> > > to apraxia, and somehow omega 3, vitamin E and inflammation are

> > > playing a role. (Neuro symptoms of vit E deficiency: Speech

> > > difficulty, coordination problems, low tone, loss of reflexes,

> loss

> > > of pain sensation (high pain tolerance), poor proprioception

and

> > > positional sense - ie poor concept of body's position in space -

> so

> > > walks into walls etc). It is not a coincidence. Vit E protects

> the

> > > omegas from early destruction in the cell membranes.

> > > Scrampled/oxidized omegas in your cell membrane will not allow

> > > messages to pass through fluidly...AKA motor planning issues

may

> > > result. Inflammation/oxidative stress will consume anti-

oxidants

> > like

> > > vit E...and the omegas are more vulnerable to destruction. Poor

> > > absorption of nutrients at the gut level as a result of

> > inflammation

> > > will contribute to multiple nutritional deficiencies and

compound

> > the

> > > problem. Gut inflammation will allow for food proteins to leak

> into

> > > the blood stream, and the body will react by developing food

> > > allergies. It is all linked. A more comprehensive metabolic

work-

> > up

> > > is warranted for these children...then just an OT and speech

> > > assessment. Treatable deficiencies like carnitine, zinc, fat

> > soluble

> > > vitamins...need to be identified and treated. Gluten

sensitivity

> > and

> > > other food allergies (like milk, yeast -which seem

common)...need

> > to

> > > be sought out, and dietary modifications can make a huge

> > difference.

> > >

> > > Writing grants now - still trying to get funding to validate

> this.

> > > (So very busy and won't be responding to posts - just lurking

> > > whenever I have a minute - which is rare, and posting when I

> think

> > > some info might be helpful).

> > >

> > >

> > > Title: Impact Of Vitamin E And Omega 3 Supplementation In

> Children

> > > With Verbal Apraxia

> > > R , MD1 and Marilyn C Agin, MD. 1Emergency

> Medicine,

> > > Children's Hospital & Research Center Oakland, Oakland, CA,

> United

> > > States.

> > >

> > > Background: Verbal apraxia (VA) is a neurologically-based motor

> > > planning disorder of unknown etiology common in autism spectrum

> > > disorders (ASD) that anecdotally responds to omega 3

> > polyunsaturated

> > > fatty acid (PUFA) supplementation. Vitamin (vit) E deficiency

> > causes

> > > symptoms that overlap those of VA. PUFAs in the cell membrane

are

> > > vulnerable to lipid peroxidation early destruction if vit E is

> not

> > > readily available, potentially leading to neurological

sequelae.

> > > Inflammation of the gastrointestinal tract and gluten

sensitivity

> > may

> > > contribute to malabsorption of nutrients such as vit E and

> > carnitine,

> > > contributing to fatty acid metabolism dysfunction and

> neurological

> > > abnormalities.

> > > Objective: Determine efficacy of vit E and PUFA supplementation

> in

> > > children with VA.

> > > Design/Methods: 50 children diagnosed with VA were treated with

> vit

> > E

> > > + PUFA. 10 of these children were known to have ASD. A celiac

> > panel,

> > > fat soluable vitamins, carnitine level was obtained in patients

> > > having blood analyzed.

> > > Results: Age ranged from 2-13 years, (majority < 5 yrs), 38/50

> > were

> > > boys. A history of gastrointestinal symptoms, sensory

integration

> > > dysfunction, low muscle tone coordination difficulties

> (dyspraxia)

> > > were commonly reported. 48 families (96%) anecdotally reported

> > > dramatic improvements in a number of areas including speech,

> > > imitation, coordination, eye contact, behavior, sensory issues

> the

> > > development of pain sensation. 2 children experienced new

tearful

> > or

> > > aggressive behavior within 3 days of initiating vit E (400

IU/d)

> > > without apparent benefits in speech, therapy was withdrawn

within

> > a

> > > week. No other adverse effects were reported. Plasma alpha

> > tocopherol

> > > levels varied in children tested (low in 2, high in 4 and

normal

> in

> > > 4), however pre-treatment levels did not reflect clinical

> response.

> > > Low plasma carnitine was identified in 13/14 (93%) children.

> > > Antigliadin IgG antibodies were high in 9/11 (82%) children

> tested.

> > 2

> > > children reported vit D deficiency early signs of rickets.

> > > Conclusions: We describe a new disease paradigm of abnormal vit

E

> > > fatty acid metabolism causing neurological dysfunction in VA

that

> > > responds to a safe nutritional intervention. The association of

> > > carnitine deficiency gluten sensitivity with VA is a novel

> > > observation, suggesting that these children deserve a more

> > > comprehensive metabolic work-up than what is current standard

> > > practice. Larger controlled trials in apraxia autism are

> warranted.

> > >

> > >

> > >

> > >

> > > >

> > > > [ ] We're at the beginning of our

> > > journey and

> > > > needing some advice

> > > >

> > > >

> > > >

> > > > Most of you moms (and dads) probably don't remember us. We've

> > only

> > > > posted once or twice back in July/August when we were just

> > > beginning

> > > > our EI journey. My son, , is almost 27 months old now and

> is

> > > > receiving speech/OT services once/week and and OT with an EI

> > > > preschool teacher once/week. At 19-20 months he wasn't using

> any

> > > > words to communicate his needs, but would repeat 3-4 words

when

> > > > asked. He wasn't making much eye contact and would just point

> and

> > > > grunt when he wanted something. Many of you very nice ladies

on

> > > this

> > > > board encouraged me to call EI and have him evaluated now,

> rather

> > > > than wait until his second birthday. Thank you for that

> > advice!!!!

> > > >

> > > > I set up an appointment and had him evaluated by an

> audiologist,

> > > > speech therapist, and psychologist. They told us he clearly

> > > > qualifies for special education services. I'm not sure I

agree,

> > but

> > > > they said he might have a cognitive delay as well as an

obvious

> > > > speech delay. At the time, he wasn't following simple one-

step

> > > > commands or requests. For example, if I asked him to go get

his

> > > > shoes, he would just look around and/or ignore me. I'm not

sure

> > if

> > > > there truly is a cognitive delay or if he was just being

> > stubborn.

> > > > (He has proven that he is stubborn in the past) In my mind

> > though,

> > > > it didn't matter because having a cognitive delay would mean

he

> > > > qualified for another hour of service/week. The more help

> > > available,

> > > > the better. right? At that age, it's so hard to know what

> > > > is " normal " development and what they " should " be doing. Back

> > then,

> > > > I suspected he might have mild autism, but after having him

> > > evaluated

> > > > by a pediatric neurologist, I learned that most of his

> tendencies

> > > > were most likely the result of his frustration with not being

> > > > understood and his limited ability to communicate. The

> > neurologist

> > > > said he had a developmental speech disorder and that I should

> > just

> > > > continue with the speech/OT. I left his office

thinking " great

> > > > news! will catch up. " However, then I started wondering

> > about

> > > > the word " disorder. " Isn't that a lifelong condition? Could

he

> > have

> > > > given me a diagnosis for apraxia? Would he have recommended

an

> > SLP

> > > > if there was cause for concern?

> > > >

> > > > I think the EI services are really helping him. By mid-

October,

> > he

> > > > began using about 6-8 signs to communicate needs and once in

a

> > > while

> > > > would put two of them together. Lately, he has been saying

more

> > > > words, calling me " a momma " and my husband " dada " and even

> naming

> > > > several shapes and almost all the letters in the alphabet. He

> > will

> > > > follow one-step commands and some that require him to move to

> > > another

> > > > room. (I'm not sure what it all means, but it sounds pretty

> > good.)

> > > > However, I am concerned about the amount of actual " speech

> > therapy "

> > > > he is getting. I'm not sure how speech therapy works at this

> > young

> > > > of an age and how much is needed to get the best possible

> > results.

> > > > Most of what they do with him is OT. I am just now beginning

to

> > > > understand the reason for the OT and how it relates to

speech.

> > But

> > > > how much speech is enough? The program he is won't provide a

> > > > diagnosis. They " treat the child, not the disability. " But I

am

> > > > concerned that he is receiving a broad umbrella

of " treatment "

> > and

> > > > want to be sure it is enough. All the research states that

> early

> > > > intervention is so important and that if a child has apraxia,

> > > he/she

> > > > would require intense speech therapy as early as possible. He

> > > hasn't

> > > > been diagnosed with anything except a speech delay as of yet,

> but

> > I

> > > > don't want to lose any precious time here.

> > > >

> > > > Would anyone mind telling me about her child's diagnosis? How

> and

> > > > why did you " get the ball rolling? " Is apraxia only diagnosed

> by

> > an

> > > > SLP? At what age was your child diagnosed? Did you simply get

a

> > > > referral from your PED and set up an appointment with an SLP?

I

> > > have

> > > > heard it cannot be diagnosed until around age 3. Am I jumping

> the

> > > > gun here? And what sort of speech therapy do you receive? How

> > > > often? What do they do? Any suggestions, advice, or comments

> > would

> > > > be appreciated. Thank you so much for reading!

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

On the Vitamin E, don't forget the d-gamma (approx 200mg to start

along with the 400IUs d-alpha). Also, if you don't see a difference

with the Vitamin E you are using, try switching brands. I was lucky

and got a brand that worked for us on the first try (15 months

ago). I recently tried to switch brands and it is like he never

received the dose. Same goes for us if we don't use d-gamma along

with the d-alpha - it's like he didn't receive the dose.

So if at first you don't succeed, don't give up hope that your child

isn't a " Vit E responder " . It may be that you haven't found the

right brand.

> > > > >Time to post this again...published through the Pediatric

> > Academy

> > > > Society Meetings in Toronto last year...presented at

the " Late-

> > > > breaking session " . An update on nearly 200 families (many of

> you -

> >

> > > > thanks for all the info)...has been submitted to the

Pediatric

> > > > mettings this May 2008. Still waiting to hear if it was

> accepted.

> > > > Once published, I will post it on the site. However we are

> > calling

> > > > this " syndrome of allergy, apraxia and malabsorption " , as

most

> of

> > > the

> > > > responding children having a combo of allergy and gut issues

> > > together

> > > > with their verbal apraxia, coordination issues (global

> dyspraxia)

> > > and

> > > > sensory issues. This is clearly a syndrome.

> > > >

> > > > There is more that can be done for these boys in addition to

> > speech

> > > > and occupatioinal therapy - although these are also critical

> > > > interventions. We need to remove the roadblock that is

> > contributing

> > > > to apraxia, and somehow omega 3, vitamin E and inflammation

are

> > > > playing a role. (Neuro symptoms of vit E deficiency: Speech

> > > > difficulty, coordination problems, low tone, loss of

reflexes,

> > loss

> > > > of pain sensation (high pain tolerance), poor proprioception

> and

> > > > positional sense - ie poor concept of body's position in

space -

>

> > so

> > > > walks into walls etc). It is not a coincidence. Vit E

protects

> > the

> > > > omegas from early destruction in the cell membranes.

> > > > Scrampled/oxidized omegas in your cell membrane will not

allow

> > > > messages to pass through fluidly...AKA motor planning issues

> may

> > > > result. Inflammation/oxidative stress will consume anti-

> oxidants

> > > like

> > > > vit E...and the omegas are more vulnerable to destruction.

Poor

> > > > absorption of nutrients at the gut level as a result of

> > > inflammation

> > > > will contribute to multiple nutritional deficiencies and

> compound

> > > the

> > > > problem. Gut inflammation will allow for food proteins to

leak

> > into

> > > > the blood stream, and the body will react by developing food

> > > > allergies. It is all linked. A more comprehensive metabolic

> work-

> > > up

> > > > is warranted for these children...then just an OT and speech

> > > > assessment. Treatable deficiencies like carnitine, zinc, fat

> > > soluble

> > > > vitamins...need to be identified and treated. Gluten

> sensitivity

> > > and

> > > > other food allergies (like milk, yeast -which seem

> common)...need

> > > to

> > > > be sought out, and dietary modifications can make a huge

> > > difference.

> > > >

> > > > Writing grants now - still trying to get funding to validate

> > this.

> > > > (So very busy and won't be responding to posts - just

lurking

> > > > whenever I have a minute - which is rare, and posting when I

> > think

> > > > some info might be helpful).

> > > >

> > > >

> > > > Title: Impact Of Vitamin E And Omega 3 Supplementation In

> > Children

> > > > With Verbal Apraxia

> > > > R , MD1 and Marilyn C Agin, MD. 1Emergency

> > Medicine,

> > > > Children's Hospital & Research Center Oakland, Oakland, CA,

> > United

> > > > States.

> > > >

> > > > Background: Verbal apraxia (VA) is a neurologically-based

motor

> > > > planning disorder of unknown etiology common in autism

spectrum

> > > > disorders (ASD) that anecdotally responds to omega 3

> > > polyunsaturated

> > > > fatty acid (PUFA) supplementation. Vitamin (vit) E

deficiency

> > > causes

> > > > symptoms that overlap those of VA. PUFAs in the cell

membrane

> are

> > > > vulnerable to lipid peroxidation early destruction if vit E

is

> > not

> > > > readily available, potentially leading to neurological

> sequelae.

> > > > Inflammation of the gastrointestinal tract and gluten

> sensitivity

> > > may

> > > > contribute to malabsorption of nutrients such as vit E and

> > > carnitine,

> > > > contributing to fatty acid metabolism dysfunction and

> > neurological

> > > > abnormalities.

> > > > Objective: Determine efficacy of vit E and PUFA

supplementation

> > in

> > > > children with VA.

> > > > Design/Methods: 50 children diagnosed with VA were treated

with

> > vit

> > > E

> > > > + PUFA. 10 of these children were known to have ASD. A

celiac

> > > panel,

> > > > fat soluable vitamins, carnitine level was obtained in

patients

> > > > having blood analyzed.

> > > > Results: Age ranged from 2-13 years, (majority < 5 yrs),

38/50

> > > were

> > > > boys. A history of gastrointestinal symptoms, sensory

> integration

> > > > dysfunction, low muscle tone coordination difficulties

> > (dyspraxia)

> > > > were commonly reported. 48 families (96%) anecdotally

reported

> > > > dramatic improvements in a number of areas including speech,

> > > > imitation, coordination, eye contact, behavior, sensory

issues

> > the

> > > > development of pain sensation. 2 children experienced new

> tearful

> > > or

> > > > aggressive behavior within 3 days of initiating vit E (400

> IU/d)

> > > > without apparent benefits in speech, therapy was withdrawn

> within

> > > a

> > > > week. No other adverse effects were reported. Plasma alpha

> > > tocopherol

> > > > levels varied in children tested (low in 2, high in 4 and

> normal

> > in

> > > > 4), however pre-treatment levels did not reflect clinical

> > response.

> > > > Low plasma carnitine was identified in 13/14 (93%) children.

> > > > Antigliadin IgG antibodies were high in 9/11 (82%) children

> > tested.

> > > 2

> > > > children reported vit D deficiency early signs of rickets.

> > > > Conclusions: We describe a new disease paradigm of abnormal

vit

> E

> > > > fatty acid metabolism causing neurological dysfunction in VA

> that

> > > > responds to a safe nutritional intervention. The association

of

> > > > carnitine deficiency gluten sensitivity with VA is a novel

> > > > observation, suggesting that these children deserve a more

> > > > comprehensive metabolic work-up than what is current

standard

> > > > practice. Larger controlled trials in apraxia autism are

> > warranted.

> > > >

> > > >

> > > >

> > > >

> > > > >

> > > > > [ ] We're at the beginning of

our

> > > > journey and

> > > > > needing some advice

> > > > >

> > > > >

> > > > >

> > > > > Most of you moms (and dads) probably don't remember us.

We've

> > > only

> > > > > posted once or twice back in July/August when we were just

> > > > beginning

> > > > > our EI journey. My son, , is almost 27 months old now

and

> > is

> > > > > receiving speech/OT services once/week and and OT with an

EI

> > > > > preschool teacher once/week. At 19-20 months he wasn't

using

> > any

> > > > > words to communicate his needs, but would repeat 3-4 words

> when

> > > > > asked. He wasn't making much eye contact and would just

point

> > and

> > > > > grunt when he wanted something. Many of you very nice

ladies

> on

> > > > this

> > > > > board encouraged me to call EI and have him evaluated now,

> > rather

> > > > > than wait until his second birthday. Thank you for that

> > > advice!!!!

> > > > >

> > > > > I set up an appointment and had him evaluated by an

> > audiologist,

> > > > > speech therapist, and psychologist. They told us he

clearly

> > > > > qualifies for special education services. I'm not sure I

> agree,

> > > but

> > > > > they said he might have a cognitive delay as well as an

> obvious

> > > > > speech delay. At the time, he wasn't following simple one-

> step

> > > > > commands or requests. For example, if I asked him to go

get

> his

> > > > > shoes, he would just look around and/or ignore me. I'm not

> sure

> > > if

> > > > > there truly is a cognitive delay or if he was just being

> > > stubborn.

> > > > > (He has proven that he is stubborn in the past) In my mind

> > > though,

> > > > > it didn't matter because having a cognitive delay would

mean

> he

> > > > > qualified for another hour of service/week. The more help

> > > > available,

> > > > > the better. right? At that age, it's so hard to know what

> > > > > is " normal " development and what they " should " be doing.

Back

> > > then,

> > > > > I suspected he might have mild autism, but after having

him

> > > > evaluated

> > > > > by a pediatric neurologist, I learned that most of his

> > tendencies

> > > > > were most likely the result of his frustration with not

being

> > > > > understood and his limited ability to communicate. The

> > > neurologist

> > > > > said he had a developmental speech disorder and that I

should

> > > just

> > > > > continue with the speech/OT. I left his office

> thinking " great

> > > > > news! will catch up. " However, then I started

wondering

> > > about

> > > > > the word " disorder. " Isn't that a lifelong condition?

Could

> he

> > > have

> > > > > given me a diagnosis for apraxia? Would he have

recommended

> an

> > > SLP

> > > > > if there was cause for concern?

> > > > >

> > > > > I think the EI services are really helping him. By mid-

> October,

> > > he

> > > > > began using about 6-8 signs to communicate needs and once

in

> a

> > > > while

> > > > > would put two of them together. Lately, he has been saying

> more

> > > > > words, calling me " a momma " and my husband " dada " and even

> > naming

> > > > > several shapes and almost all the letters in the alphabet.

He

> > > will

> > > > > follow one-step commands and some that require him to move

to

> > > > another

> > > > > room. (I'm not sure what it all means, but it sounds

pretty

> > > good.)

> > > > > However, I am concerned about the amount of actual " speech

> > > therapy "

> > > > > he is getting. I'm not sure how speech therapy works at

this

> > > young

> > > > > of an age and how much is needed to get the best possible

> > > results.

> > > > > Most of what they do with him is OT. I am just now

beginning

> to

> > > > > understand the reason for the OT and how it relates to

> speech.

> > > But

> > > > > how much speech is enough? The program he is won't provide

a

> > > > > diagnosis. They " treat the child, not the disability. " But

I

> am

> > > > > concerned that he is receiving a broad umbrella

> of " treatment "

> > > and

> > > > > want to be sure it is enough. All the research states that

> > early

> > > > > intervention is so important and that if a child has

apraxia,

> > > > he/she

> > > > > would require intense speech therapy as early as possible.

He

> > > > hasn't

> > > > > been diagnosed with anything except a speech delay as of

yet,

> > but

> > > I

> > > > > don't want to lose any precious time here.

> > > > >

> > > > > Would anyone mind telling me about her child's diagnosis?

How

> > and

> > > > > why did you " get the ball rolling? " Is apraxia only

diagnosed

> > by

> > > an

> > > > > SLP? At what age was your child diagnosed? Did you simply

get

> a

> > > > > referral from your PED and set up an appointment with an

SLP?

> I

> > > > have

> > > > > heard it cannot be diagnosed until around age 3. Am I

jumping

> > the

> > > > > gun here? And what sort of speech therapy do you receive?

How

> > > > > often? What do they do? Any suggestions, advice, or

comments

> > > would

> > > > > be appreciated. Thank you so much for reading!

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >