New to board

[Guest guest]

Hi guys,

I am new to this board. My son has a flat spot on the right side of

his head. At his 4 month checkup (~2weeks ago), my pedi referred me to

a orthotist for a band consultation. I have not made the appt yet, b/c

I am not sure I want to do this yet. His plagiocephaly is mild (in my

opinion)...but the fact that he has no hair makes it a bit more

obvious. He was born with a normal shaped head, but has always favored

his right side....when he was younger, it was hard to even get him to

look to his left. That has gotten better with time. Now that he is

4.5 months old and holding his head up better, I've noticed that the

flat spot is getting a little better. Some people have told me that I

just need to give it a little more time and it will correct itself. He

hates tummy time, so I try to at least prop him up on his boppy or sit

him in his bumbo so that his head isn't lying on anything. I want to

do what's best for him of course, so any advice would be greatly

appreciated.

[Guest guest]

Hi guys,

I am new to this board. My son has a flat spot on the right side of

his head. At his 4 month checkup (~2weeks ago), my pedi referred me to

a orthotist for a band consultation. I have not made the appt yet, b/c

I am not sure I want to do this yet. His plagiocephaly is mild (in my

opinion)...but the fact that he has no hair makes it a bit more

obvious. He was born with a normal shaped head, but has always favored

his right side....when he was younger, it was hard to even get him to

look to his left. That has gotten better with time. Now that he is

4.5 months old and holding his head up better, I've noticed that the

flat spot is getting a little better. Some people have told me that I

just need to give it a little more time and it will correct itself. He

hates tummy time, so I try to at least prop him up on his boppy or sit

him in his bumbo so that his head isn't lying on anything. I want to

do what's best for him of course, so any advice would be greatly

appreciated.

[Guest guest]

Hi Kristi,

Welcome to the group. I second and third and Hazel! Good luck

repoing, it's hard work but if you do it 24/7 you'll see correction.

Keep us posted on his progress. Oh yea, take pictures so you can look

back and compare. Take them from a birds eye view.

Take care,

Ps..in the photos section we have a folder of before and after

pictures of babies who were repoed successfully.

>

> Hi guys,

> I am new to this board. My son has a flat spot on the right side of

> his head. At his 4 month checkup (~2weeks ago), my pedi referred me to

> a orthotist for a band consultation. I have not made the appt yet, b/c

> I am not sure I want to do this yet. His plagiocephaly is mild (in my

> opinion)...but the fact that he has no hair makes it a bit more

> obvious. He was born with a normal shaped head, but has always favored

> his right side....when he was younger, it was hard to even get him to

> look to his left. That has gotten better with time. Now that he is

> 4.5 months old and holding his head up better, I've noticed that the

> flat spot is getting a little better. Some people have told me that I

> just need to give it a little more time and it will correct itself. He

> hates tummy time, so I try to at least prop him up on his boppy or sit

> him in his bumbo so that his head isn't lying on anything. I want to

> do what's best for him of course, so any advice would be greatly

> appreciated.

>

[Guest guest]

Hi Kristi,

Welcome to the group. I second and third and Hazel! Good luck

repoing, it's hard work but if you do it 24/7 you'll see correction.

Keep us posted on his progress. Oh yea, take pictures so you can look

back and compare. Take them from a birds eye view.

Take care,

Ps..in the photos section we have a folder of before and after

pictures of babies who were repoed successfully.

>

> Hi guys,

> I am new to this board. My son has a flat spot on the right side of

> his head. At his 4 month checkup (~2weeks ago), my pedi referred me to

> a orthotist for a band consultation. I have not made the appt yet, b/c

> I am not sure I want to do this yet. His plagiocephaly is mild (in my

> opinion)...but the fact that he has no hair makes it a bit more

> obvious. He was born with a normal shaped head, but has always favored

> his right side....when he was younger, it was hard to even get him to

> look to his left. That has gotten better with time. Now that he is

> 4.5 months old and holding his head up better, I've noticed that the

> flat spot is getting a little better. Some people have told me that I

> just need to give it a little more time and it will correct itself. He

> hates tummy time, so I try to at least prop him up on his boppy or sit

> him in his bumbo so that his head isn't lying on anything. I want to

> do what's best for him of course, so any advice would be greatly

> appreciated.

>

[Guest guest]

Hi and welcome!

You don't mention what the signs of autism are -but is it sensory

issues? Sensory issues can stand alone as the diagnosis DSI or co

exist with around twenty diagnosis. Does your daughter know any type

of simple sign or picture exchange? It's easier to know if it's

autism vs a verbal impairment once you provide a way for that child

to communicate a bit to reduce frustrations. Actually...are there

signs of frustrations? (if so that's a good thing!)

It does sound like your child is being overseen by some type of

neurodevelopmental medical doctor and that's great. Many of us have

gone the genetic testing route and as nervous as we all are while we

wait for results -in almost all cases there are not " hard " reasons

for the delays. We do know however that no matter what the delays -

especially at your child's young age -now is the time to work with

your child through early intervention therapies to help bring your

child up to speed. You don't mention if your child is in speech or

occupational therapy but it sounds like she should be if not.

(but since you're a year into this I'd guess yes to both)

Below is a new member archive and then I'll post next a message on

EFA and vitamin E basics since I heard a few people asked for that

once again and know that's something you'll want to share with her MDs.

Here's a new member archive with a link to a longer one!

Hi everyone!

The complete " new member archive is was just posted a few days ago

here:

/message/77590

Here's the main points about " how do you know if it's apraxia? "

What type of apraxic like speech behaviors are you seeing that makes

you and the SLP suspect your child has apraxia vs. a simple delay in

speech? Is your child talking at all yet? At your child's age -

without speech, it's difficult to diagnose verbal apraxia -they

could " suspect " verbal apraxia and begin treatment just in case,

which wouldn't hurt your child if he ended up just having a simple

delay. Just a few questions before we could provide more accurate

answers:

Does your child have signs of oral apraxia? (for example, can he on

command smile, imitate funny faces, blow bubbles...if you put peanut

butter anywhere around his mouth can he lick it off no matter where

it is?)

http://www.cherab.org/information/speechlanguage/oralapraxia.html

Does your child have any neurological " soft signs " such as hypotonia

or sensory integration dysfunction?

http://www.cherab.org/information/speechlanguage/parentfriendlysoftsigns.html

Who else evaluated your child? Was it only the SLP through your

town school or was he also in Early Intervention through the state?

(birth to three) Was he evaluated by both a speech pathologist as

well as an occupational therapist? Was/were they knowledgeable

about apraxia? (If your child wasn't diagnosed by an occupational

therapist as well and professionals suspect apraxia -I highly

recommend you request that too either through both the school as

well as private through insurance for many reasons)

To answer any questions you may have about taking your child to see a

neurodevelopmental MD if he has not yet been to one and apraxia is

suspected... in one word - " Yes!!! " I would have your child diagnosed

(private) by a neurodevelopmental medical doctor (developmental

pediatrician or pediatric neurologist) who is knowledgeable about

apraxia and other neurologically based multi-faceted communication

impairments for numerous reasons. Reasons include (but not limited

to)

*having a " hero " on the outside of the school who can assist in a

therapeutic plan and oversee your child's development over the years

*advocacy support with the insurance company

* ruling out or confirming any neurological soft signs or any other

reasons for the delay in speech

*help those that ask " why isn't he talking yet " understand this is a

medical condition -and has nothing to do with your child's cognitive

ability. (if in your child's case it doesn't. Apraxia in itself

does not affect a child's cognitive ability -and speaking early or

late is no indication of a child's intelligence. Also contrary to

popular belief -most who have speech impairments have average to

above average intelligence)

Here's an article written by Neurodevelopmental Pediatrician Dr.

Marilyn Agin that was featured as a cover article in Contemporary

Pediatrics -a trade magazine for hundreds of thousands of pediatric

medical professionals across the US. (I wrote the parent guide)

" The " late talker " -when silence isn't golden

Not all children with delayed speech are " little Einsteins " or garden

variety " late bloomers. " Some have a speech-language disorder that

will persist unless warning signs are recognized and intervention

comes early. Includes a Guide for Parents. "

Cover feature article by Late Talker co-author Marilyn Agin MD

http://www.contemporarypediatrics.com/contpeds/article/articleDetail.jsp?id=1327\

\

20

Parent guide of article by Late Talker co-author

[Guest guest]

Just noticed that Dr. Marilyn Agin's article is no longer free

through Contemporary Pediatrics website -but found it online elsewhere

where you can read it online for free! If you need either it's

probably best to print it out since not sure if it will always be

here either. (perhaps I should copy and paste them here in the archives

so we have them?)

Podcast interview with Dr. Marilyn Agin from Contemporary Pediatrics

http://contemporarypediatrics.modernmedicine.com/radio_peds4

Actual article (where you can read it for free)

http://drgreene.mediwire.com/main/Default.aspx?P=Content & ArticleID=132720

or

http://opsc.mediwire.com/main/Default.aspx?P=Content & ArticleID=132720

My parent guide still works (for free)

http://www.contemporarypediatrics.com/contpeds/data/articlestandard/contpeds/492\

004/136315/article.pdf

=====

[Guest guest]

- thank you for the response. is in PT, OT, and ST.. She has been

in PT since 15 months of age (when she was not crawling AT ALL) and has shown

amazing progress in the PT arena.. She now walks on her own (since 22 months),

she now finally stands up without assistance (that happened in the last month)..

She does still toe walk, and is not running (she walks faster!), she can't walk

up/down stairs yet without help and that is our next PT goal for the year ot get

her doing that.. She can go up without a problem, but it's more crawling then

walking...

She is in OT 1x a week, and ST 2 times a week right now...

She does have sensory issues and her OT is working with her on those...

In ST they use PROMPT on her which is helping and she is making progress with

that.. She does not really do signs of any sort, even though we are trying.. She

knows " more " - she does that by clapping... She will point to pictures, or even

pick out what she wants on her own.. She COMPLETELY understands everything you

tell her she just can't verbally respond back to you.. SHe will point and grunt,

and yes she gets frustrated and keeps at it, she will come pull me over and

raise her arms for up to help her pick something out off the book shelf, etc...

She has had an MRI and some general testing done - all of which showned

nothing.. We took her to a dev. ped. which told us she is not autistic and is

having us run genetic testing... Hopefully we will have results in another few

weeks.. I have friends and fmaily members who tell me she is apraxic (my mother

is a ST - retired) and has mentioned that to me as well... So now we are waiting

to see if any genetic results come back and if not we will try more.. Until then

I will continue with therapies.. I am also going to try the fish oil this week

and see if we see any improvements with her over hte next few weeks...

I hope that helps fill in some blanks about ..

Thank you for your info!

Cristal

gtzellner@...

[ ] Re: New To Board

Hi and welcome!

You don't mention what the signs of autism are -but is it sensory

issues? Sensory issues can stand alone as the diagnosis DSI or co

exist with around twenty diagnosis. Does your daughter know any type

of simple sign or picture exchange? It's easier to know if it's

autism vs a verbal impairment once you provide a way for that child

to communicate a bit to reduce frustrations. Actually...are there

signs of frustrations? (if so that's a good thing!)

It does sound like your child is being overseen by some type of

neurodevelopmental medical doctor and that's great. Many of us have

gone the genetic testing route and as nervous as we all are while we

wait for results -in almost all cases there are not " hard " reasons

for the delays. We do know however that no matter what the delays -

especially at your child's young age -now is the time to work with

your child through early intervention therapies to help bring your

child up to speed. You don't mention if your child is in speech or

occupational therapy but it sounds like she should be if not.

(but since you're a year into this I'd guess yes to both)

Below is a new member archive and then I'll post next a message on

EFA and vitamin E basics since I heard a few people asked for that

once again and know that's something you'll want to share with her MDs.

Here's a new member archive with a link to a longer one!

Hi everyone!

The complete " new member archive is was just posted a few days ago

here:

http://health. groups.. com/group/ childrensapraxia net/message/ 77590

Here's the main points about " how do you know if it's apraxia? "

What type of apraxic like speech behaviors are you seeing that makes

you and the SLP suspect your child has apraxia vs. a simple delay in

speech? Is your child talking at all yet? At your child's age -

without speech, it's difficult to diagnose verbal apraxia -they

could " suspect " verbal apraxia and begin treatment just in case,

which wouldn't hurt your child if he ended up just having a simple

delay. Just a few questions before we could provide more accurate

answers:

Does your child have signs of oral apraxia? (for example, can he on

command smile, imitate funny faces, blow bubbles...if you put peanut

butter anywhere around his mouth can he lick it off no matter where

it is?)

http://www.cherab. org/information/ speechlanguage/ oralapraxia. html

Does your child have any neurological " soft signs " such as hypotonia

or sensory integration dysfunction?

http://www.cherab. org/information/ speechlanguage/ parentfriendlyso

ftsigns.html

Who else evaluated your child? Was it only the SLP through your

town school or was he also in Early Intervention through the state?

(birth to three) Was he evaluated by both a speech pathologist as

well as an occupational therapist? Was/were they knowledgeable

about apraxia? (If your child wasn't diagnosed by an occupational

therapist as well and professionals suspect apraxia -I highly

recommend you request that too either through both the school as

well as private through insurance for many reasons)

To answer any questions you may have about taking your child to see a

neurodevelopmental MD if he has not yet been to one and apraxia is

suspected... in one word - " Yes!!! " I would have your child diagnosed

(private) by a neurodevelopmental medical doctor (developmental

pediatrician or pediatric neurologist) who is knowledgeable about

apraxia and other neurologically based multi-faceted communication

impairments for numerous reasons. Reasons include (but not limited

to)

*having a " hero " on the outside of the school who can assist in a

therapeutic plan and oversee your child's development over the years

*advocacy support with the insurance company

* ruling out or confirming any neurological soft signs or any other

reasons for the delay in speech

*help those that ask " why isn't he talking yet " understand this is a

medical condition -and has nothing to do with your child's cognitive

ability. (if in your child's case it doesn't. Apraxia in itself

does not affect a child's cognitive ability -and speaking early or

late is no indication of a child's intelligence. Also contrary to

popular belief -most who have speech impairments have average to

above average intelligence)

Here's an article written by Neurodevelopmental Pediatrician Dr.

Marilyn Agin that was featured as a cover article in Contemporary

Pediatrics -a trade magazine for hundreds of thousands of pediatric

medical professionals across the US. (I wrote the parent guide)

" The " late talker " -when silence isn't golden

Not all children with delayed speech are " little Einsteins " or garden

variety " late bloomers. " Some have a speech-language disorder that

will persist unless warning signs are recognized and intervention

comes early. Includes a Guide for Parents. "

Cover feature article by Late Talker co-author Marilyn Agin MD

http://www.contempo rarypediatrics. com/contpeds/ article/articleD etail.jsp?

id=1327\

20

Parent guide of article by Late Talker co-author

[Guest guest]

that's great she's in ST, OT and PT! If she can't yet do

simple signs it's good that she's able to do simple picture exchange

for now. You'll find the story about " a mother " who drew a menu for

her apraxic child when he couldn't tell her what he wanted for

breakfast each day -that was me! What a difference a corny picture

menu makes!

There are other speech therapies that may be helpful for the apraxia

in addition to the PROMPT -such as Kit 1 of the Kaufman Kit

http://www.speechville.com/KaufmanKitArticle.html

Here's an example for the word " octopus " On one side will be a

brightly colored happy drawing of an octopus. You would start at the

bottom and work up through the heirarchy of speech development to

make it easier for your daughter to attempt words that right now may

be beyond her grasp.

octopus

ok-to-puh

ah-to-puh

ah-puh

It's a brilliant method. Not all that follow one approach let us

know about all the others out there which is why I tended to favor

speech therapists that could pull from a bag of tricks vs. just one

method.

Then again once you start the fish oils you will probably find surges

no matter what methods they are using! In addition to apraxia it's

not unusual to have co existing tonal issues. You don't mention

hypotonia -has mild low tone been pointed out by anyone? In the

mouth are you noticing any oral motor issues? Can she imitate funny

faces on command? If you tell her to smile when you take her picture

can she do that on command? When she turned 2 did she blow the

candles out on her birthday cake by herself?

What about feeding? Does she have any issues with stuffing her mouth

or drooling? Many apraxic children do well with oral motor therapies

in preschool years even though I understand there's a political

debate in the speech therapy world as to that. In theory they can

debate it but in reality I've first hand have witnessed with both of

my boys how oral motor therapy can be very beneficial.

It does sound like your child has global issues but you want to know

if it's all due to motor planning (apraxia/dyspraxia) or weakness

(hypotonia if in the body -dysarthria if in the mouth area)

My son Dakota had global delays at 2 as well. He was in therapy from

3 weeks old for torn neck muscles, crushed facial nerves and global

delays from a traumatic forceps delivery. His therapy was done at a

number of pediatric neurologists offices but the one I remember the

most was Dr. Trevor DeSouza's office. With all the therapies (we

went big time into multisensory therapies) he was in a mainstream

preschool by the time he was 3 because even though there were still

some delays -he no longer qualified for early intervention through

the school. This was back before I knew about fish oils of course -

didn't learn about them until Tanner (my apraxic child) came along.

Both my boys today are mainstreamed and if you saw them today -or

even years ago at this point -you'd have no idea where they were at

2. Children are so remarkable in that way many times. I do hope

that months or years from now you can let us know the same great

update!

Here's Tanner's " Talking Page " http://www.debtsmart.net/talk/tanner.html

=====

[Guest guest]

Dear ,

So glad you joined the group! Welcome. Your daughter sounds a lot

like my son Owen. He's almost 3. Delayed across the board, but 2

different ped neuro's have ruled out autism as it doesn't quite fit -

although, I guess like your daughter, has a couple autistic-like

things he does. For example, he sometimes " hums " to himself. I

guess that's a form of stimming!

Anyway, I'm glad you are running some genetic tests. That's right

where we are at. But I highly recommend you also work with an

integrative practioner who will run ALL the labs necessary to find

out how your daughter's metabolic systems are working. We've

discovered over the past couple weeks that my son is deficient in

carntine .... and has high, out of range lactic acid, pyruvic acid,

citric acid, 3-OH-Butyric acid. All this points to a mitochondrial

dysfunction at best (if not a mito disorder.) I was able to run a

lot of these labs thru my regular ped but it was an unbelievable pain

in the you know what to make it all happen! We'll be seeing a DAN!

tomorrow, Dr. Kurt Woeller, D.O. as he's up on all the current

research and understands mito dysfunction. In any case, your

daughter is at a critical age. I'm glad you are intervening. Do you

know if she has " low tone " ? I now regret waiting until now to push

(yes, I had to push!) for my son's carnitine levels to be checked.

This is critical to know and I highly suggest you find out by

insisting on all the carnitine labs for your daughter.

Feel free to email me off group if you want to connect more.

Warmly,

in CA

>

> Hi all - i am new to this board. I have a 2 1/2 year old little

girl

> who is delayed all the way across the board. We have yet to figure

> out the reasons why, we have been told it is not autism (she is

very

> engaging, and plays with others, etc.), but she shows some signs of

> autism. We are in the process of running genetic tests to see if

we

> can come up with an answer. She did not start walking until she

was

> 22 months, has very bad (or is lacking fine motor skills) and still

> does not talk (she babbles like her 8 month old brother, who at

times

> babbles more) which is why I started reading " the late talker " ... A

co-

> worker friend of mine gave me the suggestion, so here I am.

>

> THought I would just introduce myself as I start this journey (or

> continue it I guess, as we have been on this journey for at least a

> year already)

>

>

>

[Guest guest]

There is a line in your book that describes my child to a tee: A classic case is

a child who had trouble nursing and now sits with an open mouth and protruding

tongue. S he drools more then expected and stuffs her mouth when eating...

had issues nursing (which at the time I figured it was me, until my son

came along and he was too good at it!), she does not keep her mouth close and

drools all the time.. Her drooling is less, but she still does not keep her

mouth closed, and she tongue thrusts EVERYTHING... Her therapist is working on

all of this with her, working on biting food instead of using her tongue, and

using tongue guards on a straw, etc... Her PT has mentioned low muscle tone,

but that is improving or has improved tremendously... In OT they use the swing

and her OT said she has gotten very strong in the trunk area with this, etc.

She smiles ALL THE TIME.. My kid doesn't stop smiling - she is hte happiest 2

year old around! Granted

hse has her meltdowns! Funny faces - no, don't think so... she doesn't

stick out her tongue... she has never shaken her head no or yes (I am realizing

this now b/c our 8 month old is doing all the things she never did)... REbecca

wil lmake funny faces by smooshing her face on teh glass doors..... she blows

rasberries... She does not blow a kiss, she does not blow her candles out on the

cake, she can't blow bubbles, etc... My goal for her by October (3rd birthday)

is to be able to do this, and the therapists are working to help get her

there...

Cristal

gtzellner@...

[ ] Re: New To Board

that's great she's in ST, OT and PT! If she can't yet do

simple signs it's good that she's able to do simple picture exchange

for now. You'll find the story about " a mother " who drew a menu for

her apraxic child when he couldn't tell her what he wanted for

breakfast each day -that was me! What a difference a corny picture

menu makes!

There are other speech therapies that may be helpful for the apraxia

in addition to the PROMPT -such as Kit 1 of the Kaufman Kit

http://www.speechvi lle.com/KaufmanK itArticle. html

Here's an example for the word " octopus " On one side will be a

brightly colored happy drawing of an octopus. You would start at the

bottom and work up through the heirarchy of speech development to

make it easier for your daughter to attempt words that right now may

be beyond her grasp.

octopus

ok-to-puh

ah-to-puh

ah-puh

It's a brilliant method. Not all that follow one approach let us

know about all the others out there which is why I tended to favor

speech therapists that could pull from a bag of tricks vs. just one

method.

Then again once you start the fish oils you will probably find surges

no matter what methods they are using! In addition to apraxia it's

not unusual to have co existing tonal issues. You don't mention

hypotonia -has mild low tone been pointed out by anyone? In the

mouth are you noticing any oral motor issues? Can she imitate funny

faces on command? If you tell her to smile when you take her picture

can she do that on command? When she turned 2 did she blow the

candles out on her birthday cake by herself?

What about feeding? Does she have any issues with stuffing her mouth

or drooling? Many apraxic children do well with oral motor therapies

in preschool years even though I understand there's a political

debate in the speech therapy world as to that. In theory they can

debate it but in reality I've first hand have witnessed with both of

my boys how oral motor therapy can be very beneficial.

It does sound like your child has global issues but you want to know

if it's all due to motor planning (apraxia/dyspraxia) or weakness

(hypotonia if in the body -dysarthria if in the mouth area)

My son Dakota had global delays at 2 as well. He was in therapy from

3 weeks old for torn neck muscles, crushed facial nerves and global

delays from a traumatic forceps delivery. His therapy was done at a

number of pediatric neurologists offices but the one I remember the

most was Dr. Trevor DeSouza's office. With all the therapies (we

went big time into multisensory therapies) he was in a mainstream

preschool by the time he was 3 because even though there were still

some delays -he no longer qualified for early intervention through

the school. This was back before I knew about fish oils of course -

didn't learn about them until Tanner (my apraxic child) came along.

Both my boys today are mainstreamed and if you saw them today -or

even years ago at this point -you'd have no idea where they were at

2. Children are so remarkable in that way many times. I do hope

that months or years from now you can let us know the same great

update!

Here's Tanner's " Talking Page " http://www.debtsmar t.net/talk/ tanner.html

=====

[Guest guest]

I had those kids. Two actually but kid #1 did not have the tongue

thing bad and her speech came in on its own in time. #2 was more of a

challenge but we got the things you describe by age 3. Fear not and

never give up. I am living a dream with a walking, talking, and happy

boy. Was not that way a year ago...not even close. You will get here

where she needs to be:)

>

> There is a line in your book that describes my child to a tee: A

classic case is a child who had trouble nursing and now sits with an

open mouth and protruding tongue. S he drools more then expected and

stuffs her mouth when eating... had issues nursing (which at

the time I figured it was me, until my son came along and he was too

good at it!), she does not keep her mouth close and drools all the

time.. Her drooling is less, but she still does not keep her mouth

closed, and she tongue thrusts EVERYTHING... Her therapist is working

on all of this with her, working on biting food instead of using her

tongue, and using tongue guards on a straw, etc... Her PT has

mentioned low muscle tone, but that is improving or has improved

tremendously... In OT they use the swing and her OT said she has

gotten very strong in the trunk area with this, etc. She smiles ALL

THE TIME.. My kid doesn't stop smiling - she is hte happiest 2 year

old around! Granted

> hse has her meltdowns! Funny faces - no, don't think so... she

doesn't stick out her tongue... she has never shaken her head no or

yes (I am realizing this now b/c our 8 month old is doing all the

things she never did)... REbecca wil lmake funny faces by smooshing

her face on teh glass doors..... she blows rasberries... She does not

blow a kiss, she does not blow her candles out on the cake, she can't

blow bubbles, etc... My goal for her by October (3rd birthday) is to

be able to do this, and the therapists are working to help get her

there...

>

>

> Cristal

> gtzellner@...

>

>

>

> [ ] Re: New To Board

>

> that's great she's in ST, OT and PT! If she can't yet do

> simple signs it's good that she's able to do simple picture

exchange

> for now. You'll find the story about " a mother " who drew a menu for

> her apraxic child when he couldn't tell her what he wanted for

> breakfast each day -that was me! What a difference a corny picture

> menu makes!

>

> There are other speech therapies that may be helpful for the

apraxia

> in addition to the PROMPT -such as Kit 1 of the Kaufman Kit

> http://www.speechvi lle.com/KaufmanK itArticle. html

>

> Here's an example for the word " octopus " On one side will be a

> brightly colored happy drawing of an octopus. You would start at

the

> bottom and work up through the heirarchy of speech development to

> make it easier for your daughter to attempt words that right now

may

> be beyond her grasp.

> octopus

> ok-to-puh

> ah-to-puh

> ah-puh

>

> It's a brilliant method. Not all that follow one approach let us

> know about all the others out there which is why I tended to favor

> speech therapists that could pull from a bag of tricks vs. just one

> method.

>

> Then again once you start the fish oils you will probably find

surges

> no matter what methods they are using! In addition to apraxia it's

> not unusual to have co existing tonal issues. You don't mention

> hypotonia -has mild low tone been pointed out by anyone? In the

> mouth are you noticing any oral motor issues? Can she imitate funny

> faces on command? If you tell her to smile when you take her

picture

> can she do that on command? When she turned 2 did she blow the

> candles out on her birthday cake by herself?

>

> What about feeding? Does she have any issues with stuffing her

mouth

> or drooling? Many apraxic children do well with oral motor

therapies

> in preschool years even though I understand there's a political

> debate in the speech therapy world as to that. In theory they can

> debate it but in reality I've first hand have witnessed with both

of

> my boys how oral motor therapy can be very beneficial.

>

> It does sound like your child has global issues but you want to

know

> if it's all due to motor planning (apraxia/dyspraxia) or weakness

> (hypotonia if in the body -dysarthria if in the mouth area)

>

> My son Dakota had global delays at 2 as well. He was in therapy

from

> 3 weeks old for torn neck muscles, crushed facial nerves and global

> delays from a traumatic forceps delivery. His therapy was done at a

> number of pediatric neurologists offices but the one I remember the

> most was Dr. Trevor DeSouza's office. With all the therapies (we

> went big time into multisensory therapies) he was in a mainstream

> preschool by the time he was 3 because even though there were still

> some delays -he no longer qualified for early intervention through

> the school. This was back before I knew about fish oils of course -

> didn't learn about them until Tanner (my apraxic child) came along.

>

> Both my boys today are mainstreamed and if you saw them today -or

> even years ago at this point -you'd have no idea where they were at

> 2. Children are so remarkable in that way many times. I do hope

> that months or years from now you can let us know the same great

> update!

>

> Here's Tanner's " Talking Page " http://www.debtsmar t.net/talk/

tanner.html

>

> =====

>

[Guest guest]

,

One of my OTs got my daugther to blow by using a birthday blower and cutting

it to about one inch and she blew at candle through the small blower. We just

cut an inch off the end and used the end part. After my daughter did this a

couple of times she started blowing out the candles without it. The first time

she blew the candles out herself I had the blower in her mouth and told her to

blow and when I saw she was about to blow I took the blower away and she blew

out the candles and we all clapped and said hurray. Boy was she proud !

I too am new to this board and the more I read the more I am realising that my

daugther may have global apraxia. The doctor said developmental delays with

some autistic traits but the new speech path we have who uses techniques of

prompt and talk tools told me my daugher seems apraxic to her. I think she is

right. She also lets her tongue hand out at times. This is getting less though

with oral motor excercises.

Anyhow, I am glad to be part of this group too and plan to learn alot.

In the end regardless of dx we are all on one mission to help our children

together !

Demi

Cristal <gtzellner@...> wrote:

There is a line in your book that describes my child to a tee: A

classic case is a child who had trouble nursing and now sits with an open mouth

and protruding tongue. S he drools more then expected and stuffs her mouth when

eating... had issues nursing (which at the time I figured it was me,

until my son came along and he was too good at it!), she does not keep her mouth

close and drools all the time.. Her drooling is less, but she still does not

keep her mouth closed, and she tongue thrusts EVERYTHING... Her therapist is

working on all of this with her, working on biting food instead of using her

tongue, and using tongue guards on a straw, etc... Her PT has mentioned low

muscle tone, but that is improving or has improved tremendously... In OT they

use the swing and her OT said she has gotten very strong in the trunk area with

this, etc. She smiles ALL THE TIME.. My kid doesn't stop smiling - she is hte

happiest 2 year old around! Granted

hse has her meltdowns! Funny faces - no, don't think so... she doesn't stick

out her tongue... she has never shaken her head no or yes (I am realizing this

now b/c our 8 month old is doing all the things she never did)... REbecca wil

lmake funny faces by smooshing her face on teh glass doors..... she blows

rasberries... She does not blow a kiss, she does not blow her candles out on the

cake, she can't blow bubbles, etc... My goal for her by October (3rd birthday)

is to be able to do this, and the therapists are working to help get her

there...

Cristal

gtzellner@...

[ ] Re: New To Board

that's great she's in ST, OT and PT! If she can't yet do

simple signs it's good that she's able to do simple picture exchange

for now. You'll find the story about " a mother " who drew a menu for

her apraxic child when he couldn't tell her what he wanted for

breakfast each day -that was me! What a difference a corny picture

menu makes!

There are other speech therapies that may be helpful for the apraxia

in addition to the PROMPT -such as Kit 1 of the Kaufman Kit

http://www.speechvi lle.com/KaufmanK itArticle. html

Here's an example for the word " octopus " On one side will be a

brightly colored happy drawing of an octopus. You would start at the

bottom and work up through the heirarchy of speech development to

make it easier for your daughter to attempt words that right now may

be beyond her grasp.

octopus

ok-to-puh

ah-to-puh

ah-puh

It's a brilliant method. Not all that follow one approach let us

know about all the others out there which is why I tended to favor

speech therapists that could pull from a bag of tricks vs. just one

method.

Then again once you start the fish oils you will probably find surges

no matter what methods they are using! In addition to apraxia it's

not unusual to have co existing tonal issues. You don't mention

hypotonia -has mild low tone been pointed out by anyone? In the

mouth are you noticing any oral motor issues? Can she imitate funny

faces on command? If you tell her to smile when you take her picture

can she do that on command? When she turned 2 did she blow the

candles out on her birthday cake by herself?

What about feeding? Does she have any issues with stuffing her mouth

or drooling? Many apraxic children do well with oral motor therapies

in preschool years even though I understand there's a political

debate in the speech therapy world as to that. In theory they can

debate it but in reality I've first hand have witnessed with both of

my boys how oral motor therapy can be very beneficial.

It does sound like your child has global issues but you want to know

if it's all due to motor planning (apraxia/dyspraxia) or weakness

(hypotonia if in the body -dysarthria if in the mouth area)

My son Dakota had global delays at 2 as well. He was in therapy from

3 weeks old for torn neck muscles, crushed facial nerves and global

delays from a traumatic forceps delivery. His therapy was done at a

number of pediatric neurologists offices but the one I remember the

most was Dr. Trevor DeSouza's office. With all the therapies (we

went big time into multisensory therapies) he was in a mainstream

preschool by the time he was 3 because even though there were still

some delays -he no longer qualified for early intervention through

the school. This was back before I knew about fish oils of course -

didn't learn about them until Tanner (my apraxic child) came along.

Both my boys today are mainstreamed and if you saw them today -or

even years ago at this point -you'd have no idea where they were at

2. Children are so remarkable in that way many times. I do hope

that months or years from now you can let us know the same great

update!

Here's Tanner's " Talking Page " http://www.debtsmar t.net/talk/ tanner.html

=====

[Guest guest]

There is a talktools set of blowers for $28 at super dooper. The

blowers go from easy to hard and are a fun way to practice this

skill.

> There is a line in your book that describes my child to a

tee: A classic case is a child who had trouble nursing and now sits

with an open mouth and protruding tongue. S he drools more then

expected and stuffs her mouth when eating... had issues

nursing (which at the time I figured it was me, until my son came

along and he was too good at it!), she does not keep her mouth close

and drools all the time.. Her drooling is less, but she still does

not keep her mouth closed, and she tongue thrusts EVERYTHING... Her

therapist is working on all of this with her, working on biting food

instead of using her tongue, and using tongue guards on a straw,

etc... Her PT has mentioned low muscle tone, but that is improving or

has improved tremendously... In OT they use the swing and her OT said

she has gotten very strong in the trunk area with this, etc. She

smiles ALL THE TIME.. My kid doesn't stop smiling - she is hte

happiest 2 year old around! Granted

> hse has her meltdowns! Funny faces - no, don't think so... she

doesn't stick out her tongue... she has never shaken her head no or

yes (I am realizing this now b/c our 8 month old is doing all the

things she never did)... REbecca wil lmake funny faces by smooshing

her face on teh glass doors..... she blows rasberries... She does not

blow a kiss, she does not blow her candles out on the cake, she can't

blow bubbles, etc... My goal for her by October (3rd birthday) is to

be able to do this, and the therapists are working to help get her

there...

>

> Cristal

> gtzellner@...

>

> [ ] Re: New To Board

>

> that's great she's in ST, OT and PT! If she can't yet do

> simple signs it's good that she's able to do simple picture

exchange

> for now. You'll find the story about " a mother " who drew a menu for

> her apraxic child when he couldn't tell her what he wanted for

> breakfast each day -that was me! What a difference a corny picture

> menu makes!

>

> There are other speech therapies that may be helpful for the

apraxia

> in addition to the PROMPT -such as Kit 1 of the Kaufman Kit

> http://www.speechvi lle.com/KaufmanK itArticle. html

>

> Here's an example for the word " octopus " On one side will be a

> brightly colored happy drawing of an octopus. You would start at

the

> bottom and work up through the heirarchy of speech development to

> make it easier for your daughter to attempt words that right now

may

> be beyond her grasp.

> octopus

> ok-to-puh

> ah-to-puh

> ah-puh

>

> It's a brilliant method. Not all that follow one approach let us

> know about all the others out there which is why I tended to favor

> speech therapists that could pull from a bag of tricks vs. just one

> method.

>

> Then again once you start the fish oils you will probably find

surges

> no matter what methods they are using! In addition to apraxia it's

> not unusual to have co existing tonal issues. You don't mention

> hypotonia -has mild low tone been pointed out by anyone? In the

> mouth are you noticing any oral motor issues? Can she imitate funny

> faces on command? If you tell her to smile when you take her

picture

> can she do that on command? When she turned 2 did she blow the

> candles out on her birthday cake by herself?

>

> What about feeding? Does she have any issues with stuffing her

mouth

> or drooling? Many apraxic children do well with oral motor

therapies

> in preschool years even though I understand there's a political

> debate in the speech therapy world as to that. In theory they can

> debate it but in reality I've first hand have witnessed with both

of

> my boys how oral motor therapy can be very beneficial.

>

> It does sound like your child has global issues but you want to

know

> if it's all due to motor planning (apraxia/dyspraxia) or weakness

> (hypotonia if in the body -dysarthria if in the mouth area)

>

> My son Dakota had global delays at 2 as well. He was in therapy

from

> 3 weeks old for torn neck muscles, crushed facial nerves and global

> delays from a traumatic forceps delivery. His therapy was done at a

> number of pediatric neurologists offices but the one I remember the

> most was Dr. Trevor DeSouza's office. With all the therapies (we

> went big time into multisensory therapies) he was in a mainstream

> preschool by the time he was 3 because even though there were still

> some delays -he no longer qualified for early intervention through

> the school. This was back before I knew about fish oils of course -

> didn't learn about them until Tanner (my apraxic child) came along.

>

> Both my boys today are mainstreamed and if you saw them today -or

> even years ago at this point -you'd have no idea where they were at

> 2. Children are so remarkable in that way many times. I do hope

> that months or years from now you can let us know the same great

> update!

>

> Here's Tanner's " Talking Page " http://www.debtsmar t.net/talk/

tanner.html

>

> =====

>

[Guest guest]

Welcome ,

I have two kids with speech issues, one () now tests age-

appropriate and no longer receives therapy, and one (Tyler) is 21

months old and is way behind. The nursing thing drew my attention,

because we sorta had a problem there, too. And between my four kids

I've nursed for more than eight years, so I knew for sure it wasn't

my technique. He nursed and got plenty of nourishment, but I

experienced sharp pain for the first six months, and dull pain after

that. A friend of mine, who happens to be a La Leche Leader,

immediately dx'd (correctly) the situation: tongue tie. This was

confirmed by several medical professionals, including an ENT at

CHOP. Since the feeding issue was not major (for the baby, that is),

we waited until he was one to a frenuloplasty (frenulum was slightly

clipped -- only required one stitch). On the one hand, the surgery

was a definite success for me -- no more pain when nursing, which

continues to this day, a little bit. On the other hand, he still

doesn't know what to do with that tongue! I can't decide if the

tongue tie did nothing for his speech, or whether it was done too

late. Either way, it is a major reason for his bad articulation, and

he still has a hard time with softer foods like yogurt and applesauce.

We are trying to work on it with our NACD home program, but he really

hates it! The one exercise specifically for the tongue is to put a

spoon in his mouth and press down on his tongue for five seconds

(don't push back, as that will just make him stick his tongue out,

not the goal here; straight down). We do this twice per day,

repeating it as many times as he will let us, which is not much, for

up to a minute.

So if you haven't ruled out a tongue tie, you might want to have that

checked out. (It is not uncommon, but it is also not the usual cause

for speech issues. Our pediatrician says one of his college friends

has a complete tongue tie, but perfect speech. Go figure.) And I

hear from others that the spoon does eventually help over time.

in NJ

>

> There is a line in your book that describes my child to a tee: A

classic case is a child who had trouble nursing and now sits with an

open mouth and protruding tongue. S he drools more then expected and

stuffs her mouth when eating... had issues nursing (which at

the time I figured it was me, until my son came along and he was too

good at it!), she does not keep her mouth close and drools all the

time.. Her drooling is less, but she still does not keep her mouth

closed, and she tongue thrusts EVERYTHING... Her therapist is working

on all of this with her, working on biting food instead of using her

tongue, and using tongue guards on a straw, etc... Her PT has

mentioned low muscle tone, but that is improving or has improved

tremendously... In OT they use the swing and her OT said she has

gotten very strong in the trunk area with this, etc. She smiles ALL

THE TIME.. My kid doesn't stop smiling - she is hte happiest 2 year

old around! Granted

> hse has her meltdowns! Funny faces - no, don't think so... she

doesn't stick out her tongue... she has never shaken her head no or

yes (I am realizing this now b/c our 8 month old is doing all the

things she never did)... REbecca wil lmake funny faces by smooshing

her face on teh glass doors..... she blows rasberries... She does not

blow a kiss, she does not blow her candles out on the cake, she can't

blow bubbles, etc... My goal for her by October (3rd birthday) is to

be able to do this, and the therapists are working to help get her

there...

>

>

> Cristal

> gtzellner@...

>

>

>

> [ ] Re: New To Board

>

> that's great she's in ST, OT and PT! If she can't yet do

> simple signs it's good that she's able to do simple picture

exchange

> for now. You'll find the story about " a mother " who drew a menu for

> her apraxic child when he couldn't tell her what he wanted for

> breakfast each day -that was me! What a difference a corny picture

> menu makes!

>

> There are other speech therapies that may be helpful for the

apraxia

> in addition to the PROMPT -such as Kit 1 of the Kaufman Kit

> http://www.speechvi lle.com/KaufmanK itArticle. html

>

> Here's an example for the word " octopus " On one side will be a

> brightly colored happy drawing of an octopus. You would start at

the

> bottom and work up through the heirarchy of speech development to

> make it easier for your daughter to attempt words that right now

may

> be beyond her grasp.

> octopus

> ok-to-puh

> ah-to-puh

> ah-puh

>

> It's a brilliant method. Not all that follow one approach let us

> know about all the others out there which is why I tended to favor

> speech therapists that could pull from a bag of tricks vs. just one

> method.

>

> Then again once you start the fish oils you will probably find

surges

> no matter what methods they are using! In addition to apraxia it's

> not unusual to have co existing tonal issues. You don't mention

> hypotonia -has mild low tone been pointed out by anyone? In the

> mouth are you noticing any oral motor issues? Can she imitate funny

> faces on command? If you tell her to smile when you take her

picture

> can she do that on command? When she turned 2 did she blow the

> candles out on her birthday cake by herself?

>

> What about feeding? Does she have any issues with stuffing her

mouth

> or drooling? Many apraxic children do well with oral motor

therapies

> in preschool years even though I understand there's a political

> debate in the speech therapy world as to that. In theory they can

> debate it but in reality I've first hand have witnessed with both

of

> my boys how oral motor therapy can be very beneficial.

>

> It does sound like your child has global issues but you want to

know

> if it's all due to motor planning (apraxia/dyspraxia) or weakness

> (hypotonia if in the body -dysarthria if in the mouth area)

>

> My son Dakota had global delays at 2 as well. He was in therapy

from

> 3 weeks old for torn neck muscles, crushed facial nerves and global

> delays from a traumatic forceps delivery. His therapy was done at a

> number of pediatric neurologists offices but the one I remember the

> most was Dr. Trevor DeSouza's office. With all the therapies (we

> went big time into multisensory therapies) he was in a mainstream

> preschool by the time he was 3 because even though there were still

> some delays -he no longer qualified for early intervention through

> the school. This was back before I knew about fish oils of course -

> didn't learn about them until Tanner (my apraxic child) came along.

>

> Both my boys today are mainstreamed and if you saw them today -or

> even years ago at this point -you'd have no idea where they were at

> 2. Children are so remarkable in that way many times. I do hope

> that months or years from now you can let us know the same great

> update!

>

> Here's Tanner's " Talking Page " http://www.debtsmar t.net/talk/

tanner.html

>

> =====

>

[Guest guest]

that is a great idea, i'll have to try that one!

I just spoke with her ST (emailed) and she did agree with me that has

SEVERE apraxia and dysarthria... So thankfully she knows what she is talking

about and is working with her to help " fix " the areas needed... She also

mentioned Fish Oil and was happy that I am going to be starting on it!!

Cristal

gtzellner@...

[childrensapraxiane t] Re: New To Board

that's great she's in ST, OT and PT! If she can't yet do

simple signs it's good that she's able to do simple picture exchange

for now. You'll find the story about " a mother " who drew a menu for

her apraxic child when he couldn't tell her what he wanted for

breakfast each day -that was me! What a difference a corny picture

menu makes!

There are other speech therapies that may be helpful for the apraxia

in addition to the PROMPT -such as Kit 1 of the Kaufman Kit

http://www.speechvi lle.com/KaufmanK itArticle. html

Here's an example for the word " octopus " On one side will be a

brightly colored happy drawing of an octopus. You would start at the

bottom and work up through the heirarchy of speech development to

make it easier for your daughter to attempt words that right now may

be beyond her grasp.

octopus

ok-to-puh

ah-to-puh

ah-puh

It's a brilliant method. Not all that follow one approach let us

know about all the others out there which is why I tended to favor

speech therapists that could pull from a bag of tricks vs. just one

method.

Then again once you start the fish oils you will probably find surges

no matter what methods they are using! In addition to apraxia it's

not unusual to have co existing tonal issues. You don't mention

hypotonia -has mild low tone been pointed out by anyone? In the

mouth are you noticing any oral motor issues? Can she imitate funny

faces on command? If you tell her to smile when you take her picture

can she do that on command? When she turned 2 did she blow the

candles out on her birthday cake by herself?

What about feeding? Does she have any issues with stuffing her mouth

or drooling? Many apraxic children do well with oral motor therapies

in preschool years even though I understand there's a political

debate in the speech therapy world as to that. In theory they can

debate it but in reality I've first hand have witnessed with both of

my boys how oral motor therapy can be very beneficial.

It does sound like your child has global issues but you want to know

if it's all due to motor planning (apraxia/dyspraxia) or weakness

(hypotonia if in the body -dysarthria if in the mouth area)

My son Dakota had global delays at 2 as well. He was in therapy from

3 weeks old for torn neck muscles, crushed facial nerves and global

delays from a traumatic forceps delivery. His therapy was done at a

number of pediatric neurologists offices but the one I remember the

most was Dr. Trevor DeSouza's office. With all the therapies (we

went big time into multisensory therapies) he was in a mainstream

preschool by the time he was 3 because even though there were still

some delays -he no longer qualified for early intervention through

the school. This was back before I knew about fish oils of course -

didn't learn about them until Tanner (my apraxic child) came along.

Both my boys today are mainstreamed and if you saw them today -or

even years ago at this point -you'd have no idea where they were at

2. Children are so remarkable in that way many times. I do hope

that months or years from now you can let us know the same great

update!

Here's Tanner's " Talking Page " http://www.debtsmar t.net/talk/ tanner.html

=====

[Guest guest]

Thanks!

Cristal

gtzellner@...

[childrensapraxiane t] Re: New To Board

>

> that's great she's in ST, OT and PT! If she can't yet do

> simple signs it's good that she's able to do simple picture

exchange

> for now. You'll find the story about " a mother " who drew a menu for

> her apraxic child when he couldn't tell her what he wanted for

> breakfast each day -that was me! What a difference a corny picture

> menu makes!

>

> There are other speech therapies that may be helpful for the

apraxia

> in addition to the PROMPT -such as Kit 1 of the Kaufman Kit

> http://www.speechvi lle.com/KaufmanK itArticle. html

>

> Here's an example for the word " octopus " On one side will be a

> brightly colored happy drawing of an octopus. You would start at

the

> bottom and work up through the heirarchy of speech development to

> make it easier for your daughter to attempt words that right now

may

> be beyond her grasp.

> octopus

> ok-to-puh

> ah-to-puh

> ah-puh

>

> It's a brilliant method. Not all that follow one approach let us

> know about all the others out there which is why I tended to favor

> speech therapists that could pull from a bag of tricks vs. just one

> method.

>

> Then again once you start the fish oils you will probably find

surges

> no matter what methods they are using! In addition to apraxia it's

> not unusual to have co existing tonal issues. You don't mention

> hypotonia -has mild low tone been pointed out by anyone? In the

> mouth are you noticing any oral motor issues? Can she imitate funny

> faces on command? If you tell her to smile when you take her

picture

> can she do that on command? When she turned 2 did she blow the

> candles out on her birthday cake by herself?

>

> What about feeding? Does she have any issues with stuffing her

mouth

> or drooling? Many apraxic children do well with oral motor

therapies

> in preschool years even though I understand there's a political

> debate in the speech therapy world as to that. In theory they can

> debate it but in reality I've first hand have witnessed with both

of

> my boys how oral motor therapy can be very beneficial.

>

> It does sound like your child has global issues but you want to

know

> if it's all due to motor planning (apraxia/dyspraxia) or weakness

> (hypotonia if in the body -dysarthria if in the mouth area)

>

> My son Dakota had global delays at 2 as well. He was in therapy

from

> 3 weeks old for torn neck muscles, crushed facial nerves and global

> delays from a traumatic forceps delivery. His therapy was done at a

> number of pediatric neurologists offices but the one I remember the

> most was Dr. Trevor DeSouza's office. With all the therapies (we

> went big time into multisensory therapies) he was in a mainstream

> preschool by the time he was 3 because even though there were still

> some delays -he no longer qualified for early intervention through

> the school. This was back before I knew about fish oils of course -

> didn't learn about them until Tanner (my apraxic child) came along.

>

> Both my boys today are mainstreamed and if you saw them today -or

> even years ago at this point -you'd have no idea where they were at

> 2. Children are so remarkable in that way many times. I do hope

> that months or years from now you can let us know the same great

> update!

>

> Here's Tanner's " Talking Page " http://www.debtsmar t.net/talk/

tanner.html

>

> =====

>

[Guest guest]

, I am new to the group too. I don’t know whether I am set up right or

not regarding the email system. I don’t have a account but I

registered with the group and seem to be getting all the emails through our

regular email system.

Anyway, I have a 3-year-old boy who has a severe speech delay. He only has

about 10 words right now and approximations of others. We have had three

different diagnoses for him – apraxia, possible autism, and PDD-NOS. I need

to ask you 2 questions regarding your email below.

1. What do you mean by “low tone?” I have heard about this but have never

understood it.

2. Also we think our son has a carnitine deficiency also, and our DAN

doctor has prescribed L-carnitine for him. We were unsuccessful in getting

him to take it orally so we tried suppositories and failed there too. He

would either spit out or vomit the oral medicine and with the suppositories

he was clearly uncomfortable with them and on the third night he was

practically in tears after we put it in so we have discontinued us of them

until we can talk to our doctor. Do you know what can result in a carnitine

deficiency?

Ann

[ ] Re: New To Board

Dear ,

So glad you joined the group! Welcome. Your daughter sounds a lot

like my son Owen. He's almost 3. Delayed across the board, but 2

different ped neuro's have ruled out autism as it doesn't quite fit -

although, I guess like your daughter, has a couple autistic-like

things he does. For example, he sometimes " hums " to himself. I

guess that's a form of stimming!

Anyway, I'm glad you are running some genetic tests. That's right

where we are at. But I highly recommend you also work with an

integrative practioner who will run ALL the labs necessary to find

out how your daughter's metabolic systems are working. We've

discovered over the past couple weeks that my son is deficient in

carntine .... and has high, out of range lactic acid, pyruvic acid,

citric acid, 3-OH-Butyric acid. All this points to a mitochondrial

dysfunction at best (if not a mito disorder.) I was able to run a

lot of these labs thru my regular ped but it was an unbelievable pain

in the you know what to make it all happen! We'll be seeing a DAN!

tomorrow, Dr. Kurt Woeller, D.O. as he's up on all the current

research and understands mito dysfunction. In any case, your

daughter is at a critical age. I'm glad you are intervening. Do you

know if she has " low tone " ? I now regret waiting until now to push

(yes, I had to push!) for my son's carnitine levels to be checked.

This is critical to know and I highly suggest you find out by

insisting on all the carnitine labs for your daughter.

Feel free to email me off group if you want to connect more.

Warmly,

in CA

>

> Hi all - i am new to this board. I have a 2 1/2 year old little

girl

> who is delayed all the way across the board. We have yet to figure

> out the reasons why, we have been told it is not autism (she is

very

> engaging, and plays with others, etc.), but she shows some signs of

> autism. We are in the process of running genetic tests to see if

we

> can come up with an answer. She did not start walking until she

was

> 22 months, has very bad (or is lacking fine motor skills) and still

> does not talk (she babbles like her 8 month old brother, who at

times

> babbles more) which is why I started reading " the late talker " ... A

co-

> worker friend of mine gave me the suggestion, so here I am.

>

> THought I would just introduce myself as I start this journey (or

> continue it I guess, as we have been on this journey for at least a

> year already)

>

>

>

[Guest guest]

our therapist actually told me to look at talktools.net and purchase their

whistles! I'm goign to look into that today... She loves bubbles but i have to

blow them for her - all she wants to do is eat the wand thing, so looking for a

way for her to learn how to blow her own bubbles!

Does anyone else have issues with their child MOUTHING everything????? It

doesn't matter what it is, my child puts everything in her mouth.. Is that part

of hte apraxia?

Cristal

gtzellner@...

[childrensapraxiane t] Re: New To Board

>

> that's great she's in ST, OT and PT! If she can't yet do

> simple signs it's good that she's able to do simple picture

exchange

> for now. You'll find the story about " a mother " who drew a menu for

> her apraxic child when he couldn't tell her what he wanted for

> breakfast each day -that was me! What a difference a corny picture

> menu makes!

>

> There are other speech therapies that may be helpful for the

apraxia

> in addition to the PROMPT -such as Kit 1 of the Kaufman Kit

> http://www.speechvi lle.com/KaufmanK itArticle. html

>

> Here's an example for the word " octopus " On one side will be a

> brightly colored happy drawing of an octopus. You would start at

the

> bottom and work up through the heirarchy of speech development to

> make it easier for your daughter to attempt words that right now

may

> be beyond her grasp.

> octopus

> ok-to-puh

> ah-to-puh

> ah-puh

>

> It's a brilliant method. Not all that follow one approach let us

> know about all the others out there which is why I tended to favor

> speech therapists that could pull from a bag of tricks vs. just one

> method.

>

> Then again once you start the fish oils you will probably find

surges

> no matter what methods they are using! In addition to apraxia it's

> not unusual to have co existing tonal issues. You don't mention

> hypotonia -has mild low tone been pointed out by anyone? In the

> mouth are you noticing any oral motor issues? Can she imitate funny

> faces on command? If you tell her to smile when you take her

picture

> can she do that on command? When she turned 2 did she blow the

> candles out on her birthday cake by herself?

>

> What about feeding? Does she have any issues with stuffing her

mouth

> or drooling? Many apraxic children do well with oral motor

therapies

> in preschool years even though I understand there's a political

> debate in the speech therapy world as to that. In theory they can

> debate it but in reality I've first hand have witnessed with both

of

> my boys how oral motor therapy can be very beneficial.

>

> It does sound like your child has global issues but you want to

know

> if it's all due to motor planning (apraxia/dyspraxia) or weakness

> (hypotonia if in the body -dysarthria if in the mouth area)

>

> My son Dakota had global delays at 2 as well. He was in therapy

from

> 3 weeks old for torn neck muscles, crushed facial nerves and global

> delays from a traumatic forceps delivery. His therapy was done at a

> number of pediatric neurologists offices but the one I remember the

> most was Dr. Trevor DeSouza's office. With all the therapies (we

> went big time into multisensory therapies) he was in a mainstream

> preschool by the time he was 3 because even though there were still

> some delays -he no longer qualified for early intervention through

> the school. This was back before I knew about fish oils of course -

> didn't learn about them until Tanner (my apraxic child) came along.

>

> Both my boys today are mainstreamed and if you saw them today -or

> even years ago at this point -you'd have no idea where they were at

> 2. Children are so remarkable in that way many times. I do hope

> that months or years from now you can let us know the same great

> update!

>

> Here's Tanner's " Talking Page " http://www.debtsmar t.net/talk/

tanner.html

>

> =====

>

[Guest guest]

My on time talker ate books when she was little yet my speech kid

mouthed nothing. As I understand it mouthing is kind of a sensory

seeking thing...they want to feel. I think thumbsucking and even

cutting as a teen is all part of that. Not saying it evolves like

that but the reasons overlap.

The talk tools feel like a rip off when you get them but the money

you save in gas trying to find them makes the cost the same.

I hate bubbles but did them religiously anyway. My son could never do

them. We tried the ones that they can eat and he was allergic. Bif

marks on his skin wherever they landed. Berry allergy.

> > There is a line in your book that describes my child to a

> tee: A classic case is a child who had trouble nursing and now sits

> with an open mouth and protruding tongue. S he drools more then

> expected and stuffs her mouth when eating... had issues

> nursing (which at the time I figured it was me, until my son came

> along and he was too good at it!), she does not keep her mouth

close

> and drools all the time.. Her drooling is less, but she still does

> not keep her mouth closed, and she tongue thrusts EVERYTHING.. .

Her

> therapist is working on all of this with her, working on biting

food

> instead of using her tongue, and using tongue guards on a straw,

> etc... Her PT has mentioned low muscle tone, but that is improving

or

> has improved tremendously. .. In OT they use the swing and her OT

said

> she has gotten very strong in the trunk area with this, etc. She

> smiles ALL THE TIME.. My kid doesn't stop smiling - she is hte

> happiest 2 year old around! Granted

> > hse has her meltdowns! Funny faces - no, don't think so... she

> doesn't stick out her tongue... she has never shaken her head no or

> yes (I am realizing this now b/c our 8 month old is doing all the

> things she never did)... REbecca wil lmake funny faces by smooshing

> her face on teh glass doors..... she blows rasberries.. . She does

not

> blow a kiss, she does not blow her candles out on the cake, she

can't

> blow bubbles, etc... My goal for her by October (3rd birthday) is

to

> be able to do this, and the therapists are working to help get her

> there...

> >

> > Cristal

> > gtzellner@ .

> >

> > [childrensapraxiane t] Re: New To Board

> >

> > that's great she's in ST, OT and PT! If she can't yet do

> > simple signs it's good that she's able to do simple picture

> exchange

> > for now. You'll find the story about " a mother " who drew a menu

for

> > her apraxic child when he couldn't tell her what he wanted for

> > breakfast each day -that was me! What a difference a corny

picture

> > menu makes!

> >

> > There are other speech therapies that may be helpful for the

> apraxia

> > in addition to the PROMPT -such as Kit 1 of the Kaufman Kit

> > http://www.speechvi lle.com/KaufmanK itArticle. html

> >

> > Here's an example for the word " octopus " On one side will be a

> > brightly colored happy drawing of an octopus. You would start at

> the

> > bottom and work up through the heirarchy of speech development to

> > make it easier for your daughter to attempt words that right now

> may

> > be beyond her grasp.

> > octopus

> > ok-to-puh

> > ah-to-puh

> > ah-puh

> >

> > It's a brilliant method. Not all that follow one approach let us

> > know about all the others out there which is why I tended to

favor

> > speech therapists that could pull from a bag of tricks vs. just

one

> > method.

> >

> > Then again once you start the fish oils you will probably find

> surges

> > no matter what methods they are using! In addition to apraxia

it's

> > not unusual to have co existing tonal issues. You don't mention

> > hypotonia -has mild low tone been pointed out by anyone? In the

> > mouth are you noticing any oral motor issues? Can she imitate

funny

> > faces on command? If you tell her to smile when you take her

> picture

> > can she do that on command? When she turned 2 did she blow the

> > candles out on her birthday cake by herself?

> >

> > What about feeding? Does she have any issues with stuffing her

> mouth

> > or drooling? Many apraxic children do well with oral motor

> therapies

> > in preschool years even though I understand there's a political

> > debate in the speech therapy world as to that. In theory they can

> > debate it but in reality I've first hand have witnessed with both

> of

> > my boys how oral motor therapy can be very beneficial.

> >

> > It does sound like your child has global issues but you want to

> know

> > if it's all due to motor planning (apraxia/dyspraxia) or weakness

> > (hypotonia if in the body -dysarthria if in the mouth area)

> >

> > My son Dakota had global delays at 2 as well. He was in therapy

> from

> > 3 weeks old for torn neck muscles, crushed facial nerves and

global

> > delays from a traumatic forceps delivery. His therapy was done at

a

> > number of pediatric neurologists offices but the one I remember

the

> > most was Dr. Trevor DeSouza's office. With all the therapies (we

> > went big time into multisensory therapies) he was in a mainstream

> > preschool by the time he was 3 because even though there were

still

> > some delays -he no longer qualified for early intervention

through

> > the school. This was back before I knew about fish oils of

course -

> > didn't learn about them until Tanner (my apraxic child) came

along.

> >

> > Both my boys today are mainstreamed and if you saw them today -or

> > even years ago at this point -you'd have no idea where they were

at

> > 2. Children are so remarkable in that way many times. I do hope

> > that months or years from now you can let us know the same great

> > update!

> >

> > Here's Tanner's " Talking Page " http://www.debtsmar t.net/talk/

> tanner.html

> >

> > =====

> >

[Guest guest]

Why does he hate it do you think? Do his teeth hurt? Does he give you

trouble brushing them?

We had nursing troubles with both kids but it turns out that was

malabsorption...mine were getting what should have been the right

amount if I were not an undiagnosed celiac lalabsorbing and if they

were not getting supplemented with allergens and bad water.

With that said, at Tylers age hated anything touching his

face/mouth. Still stonefaced at 2 he loved and responded well to the

exercise you speak of. That was when his gums stopped bleeding and

his mouth, while still sensitive, was less so. Got better completely

after changes you already know about.

> >

> > There is a line in your book that describes my child to a tee: A

> classic case is a child who had trouble nursing and now sits with

an

> open mouth and protruding tongue. S he drools more then expected

and

> stuffs her mouth when eating... had issues nursing (which

at

> the time I figured it was me, until my son came along and he was

too

> good at it!), she does not keep her mouth close and drools all the

> time.. Her drooling is less, but she still does not keep her mouth

> closed, and she tongue thrusts EVERYTHING... Her therapist is

working

> on all of this with her, working on biting food instead of using

her

> tongue, and using tongue guards on a straw, etc... Her PT has

> mentioned low muscle tone, but that is improving or has improved

> tremendously... In OT they use the swing and her OT said she has

> gotten very strong in the trunk area with this, etc. She smiles

ALL

> THE TIME.. My kid doesn't stop smiling - she is hte happiest 2 year

> old around! Granted

> > hse has her meltdowns! Funny faces - no, don't think so...

she

> doesn't stick out her tongue... she has never shaken her head no or

> yes (I am realizing this now b/c our 8 month old is doing all the

> things she never did)... REbecca wil lmake funny faces by smooshing

> her face on teh glass doors..... she blows rasberries... She does

not

> blow a kiss, she does not blow her candles out on the cake, she

can't

> blow bubbles, etc... My goal for her by October (3rd birthday) is

to

> be able to do this, and the therapists are working to help get her

> there...

> >

> >

> > Cristal

> > gtzellner@

> >

> >

> >

> > [ ] Re: New To Board

> >

> > that's great she's in ST, OT and PT! If she can't yet do

> > simple signs it's good that she's able to do simple picture

> exchange

> > for now. You'll find the story about " a mother " who drew a menu

for

> > her apraxic child when he couldn't tell her what he wanted for

> > breakfast each day -that was me! What a difference a corny

picture

> > menu makes!

> >

> > There are other speech therapies that may be helpful for the

> apraxia

> > in addition to the PROMPT -such as Kit 1 of the Kaufman Kit

> > http://www.speechvi lle.com/KaufmanK itArticle. html

> >

> > Here's an example for the word " octopus " On one side will be a

> > brightly colored happy drawing of an octopus. You would start at

> the

> > bottom and work up through the heirarchy of speech development to

> > make it easier for your daughter to attempt words that right now

> may

> > be beyond her grasp.

> > octopus

> > ok-to-puh

> > ah-to-puh

> > ah-puh

> >

> > It's a brilliant method. Not all that follow one approach let us

> > know about all the others out there which is why I tended to

favor

> > speech therapists that could pull from a bag of tricks vs. just

one

> > method.

> >

> > Then again once you start the fish oils you will probably find

> surges

> > no matter what methods they are using! In addition to apraxia

it's

> > not unusual to have co existing tonal issues. You don't mention

> > hypotonia -has mild low tone been pointed out by anyone? In the

> > mouth are you noticing any oral motor issues? Can she imitate

funny

> > faces on command? If you tell her to smile when you take her

> picture

> > can she do that on command? When she turned 2 did she blow the

> > candles out on her birthday cake by herself?

> >

> > What about feeding? Does she have any issues with stuffing her

> mouth

> > or drooling? Many apraxic children do well with oral motor

> therapies

> > in preschool years even though I understand there's a political

> > debate in the speech therapy world as to that. In theory they can

> > debate it but in reality I've first hand have witnessed with both

> of

> > my boys how oral motor therapy can be very beneficial.

> >

> > It does sound like your child has global issues but you want to

> know

> > if it's all due to motor planning (apraxia/dyspraxia) or weakness

> > (hypotonia if in the body -dysarthria if in the mouth area)

> >

> > My son Dakota had global delays at 2 as well. He was in therapy

> from

> > 3 weeks old for torn neck muscles, crushed facial nerves and

global

> > delays from a traumatic forceps delivery. His therapy was done at

a

> > number of pediatric neurologists offices but the one I remember

the

> > most was Dr. Trevor DeSouza's office. With all the therapies (we

> > went big time into multisensory therapies) he was in a mainstream

> > preschool by the time he was 3 because even though there were

still

> > some delays -he no longer qualified for early intervention

through

> > the school. This was back before I knew about fish oils of

course -

> > didn't learn about them until Tanner (my apraxic child) came

along.

> >

> > Both my boys today are mainstreamed and if you saw them today -or

> > even years ago at this point -you'd have no idea where they were

at

> > 2. Children are so remarkable in that way many times. I do hope

> > that months or years from now you can let us know the same great

> > update!

> >

> > Here's Tanner's " Talking Page " http://www.debtsmar t.net/talk/

> tanner.html

> >

> > =====

> >

[Guest guest]

Low tone is described well in The Late Talker and I think on the

intro page to this board. Dis your boy feel like dead weight when he

was a baby? Fall back if you did not support him well past the age

for that? Can't sit up well? Tone issues can occur in the face only

or throughout the body. A good PT or OT can help dx for sure. The

docs miss it a lot. I think it is just that they have less time with

the kids whereas the therapists see it more.

Carnitine deficiency is serious business. Many supplement and get

energy and speech gains but it is best to get tested for a base level

first. Also, it is important to see if any carnitine is in diet to

rule out true deficiency versus voluntary. Carnitine deficiency is

nothing to take lightly. Take a look at emedicine. It is considered

rare but has been seen here in apraxic children and certainly

warrants investigation so you know one way or the other.

Best Wishes!

> >

> > Hi all - i am new to this board. I have a 2 1/2 year old little

> girl

> > who is delayed all the way across the board. We have yet to figure

> > out the reasons why, we have been told it is not autism (she is

> very

> > engaging, and plays with others, etc.), but she shows some signs

of

> > autism. We are in the process of running genetic tests to see if

> we

> > can come up with an answer. She did not start walking until she

> was

> > 22 months, has very bad (or is lacking fine motor skills) and

still

> > does not talk (she babbles like her 8 month old brother, who at

> times

> > babbles more) which is why I started reading " the late talker " ...

A

> co-

> > worker friend of mine gave me the suggestion, so here I am.

> >

> > THought I would just introduce myself as I start this journey (or

> > continue it I guess, as we have been on this journey for at least

a

> > year already)

> >

> >

> >

>

>

>

>

[Guest guest]

The first blower, I think it was like a pre-blower from Talk Tools got my

daughter blowing in general and then she was able to blow bubbles.

For mouthing alot of objects I found that increasing zinc helped this. When we

did a blood test I found out that her zinc levels were low. My dd usually does

not mouth things anymore after I increased the zinc. What I have not been able

to stop yet is the tongue sucking she does on and off. Any suggestions on this

from anyone ?

Demi

Cristal <gtzellner@...> wrote:

our therapist actually told me to look at talktools.net and purchase

their whistles! I'm goign to look into that today... She loves bubbles but i

have to blow them for her - all she wants to do is eat the wand thing, so

looking for a way for her to learn how to blow her own bubbles!

Does anyone else have issues with their child MOUTHING everything????? It

doesn't matter what it is, my child puts everything in her mouth.. Is that part

of hte apraxia?

Cristal

gtzellner@...

[childrensapraxiane t] Re: New To Board

>

> that's great she's in ST, OT and PT! If she can't yet do

> simple signs it's good that she's able to do simple picture

exchange

> for now. You'll find the story about " a mother " who drew a menu for

> her apraxic child when he couldn't tell her what he wanted for

> breakfast each day -that was me! What a difference a corny picture

> menu makes!

>

> There are other speech therapies that may be helpful for the

apraxia

> in addition to the PROMPT -such as Kit 1 of the Kaufman Kit

> http://www.speechvi lle.com/KaufmanK itArticle. html

>

> Here's an example for the word " octopus " On one side will be a

> brightly colored happy drawing of an octopus. You would start at

the

> bottom and work up through the heirarchy of speech development to

> make it easier for your daughter to attempt words that right now

may

> be beyond her grasp.

> octopus

> ok-to-puh

> ah-to-puh

> ah-puh

>

> It's a brilliant method. Not all that follow one approach let us

> know about all the others out there which is why I tended to favor

> speech therapists that could pull from a bag of tricks vs. just one

> method.

>

> Then again once you start the fish oils you will probably find

surges

> no matter what methods they are using! In addition to apraxia it's

> not unusual to have co existing tonal issues. You don't mention

> hypotonia -has mild low tone been pointed out by anyone? In the

> mouth are you noticing any oral motor issues? Can she imitate funny

> faces on command? If you tell her to smile when you take her

picture

> can she do that on command? When she turned 2 did she blow the

> candles out on her birthday cake by herself?

>

> What about feeding? Does she have any issues with stuffing her

mouth

> or drooling? Many apraxic children do well with oral motor

therapies

> in preschool years even though I understand there's a political

> debate in the speech therapy world as to that. In theory they can

> debate it but in reality I've first hand have witnessed with both

of

> my boys how oral motor therapy can be very beneficial.

>

> It does sound like your child has global issues but you want to

know

> if it's all due to motor planning (apraxia/dyspraxia) or weakness

> (hypotonia if in the body -dysarthria if in the mouth area)

>

> My son Dakota had global delays at 2 as well. He was in therapy

from

> 3 weeks old for torn neck muscles, crushed facial nerves and global

> delays from a traumatic forceps delivery. His therapy was done at a

> number of pediatric neurologists offices but the one I remember the

> most was Dr. Trevor DeSouza's office. With all the therapies (we

> went big time into multisensory therapies) he was in a mainstream

> preschool by the time he was 3 because even though there were still

> some delays -he no longer qualified for early intervention through

> the school. This was back before I knew about fish oils of course -

> didn't learn about them until Tanner (my apraxic child) came along.

>

> Both my boys today are mainstreamed and if you saw them today -or

> even years ago at this point -you'd have no idea where they were at

> 2. Children are so remarkable in that way many times. I do hope

> that months or years from now you can let us know the same great

> update!

>

> Here's Tanner's " Talking Page " http://www.debtsmar t.net/talk/

tanner.html

>

> =====

>

[Guest guest]

Hi Ann and welcome!

Low tone is also called hypotonia when it's in the body. It's the way

the muscles are at rest -there is a weakness. If it's in the mouth

it's called a dysarthria and it's not unusual for a child to have

both apraxia (motor planning) and dysarthria (weakness) issues going

on which is why it's best to secure appropriate diagnosis so you can

secure appropriate treatment.

Here's a quick clip on what low tone is

" Here are some quick parent friendly signs of mild hypotonia:

A child with hypotonia will feel heavier than a child of the same

weight without hypotonia (kind of like the difference between picking

up your child when he's fast asleep vs. awake) Hypotonia can be

anywhere in the body. Does your child appear to tire faster than

other kids his age walking in the mall etc.? Will you and your wife

not dream of taking him anywhere without the stroller because you

know if you don't bring the stroller you will be stuck carrying him

because if you don't pick him up he will sit on the floor crying with

his arms in the air for you to pick him up again? And since he's

nonverbal -you will get looks from people passing by, or perhaps even

comments -that your child is acting spoiled. When you pick him off

the floor -it's not as easy as it looks for you -or others that try!

Most will say " wow he's solid! " when picking him up. " Solid " is the

word used by almost everyone to describe your child when people pick

him up come to think of it. His body may look small and light -and

many times both look like a cherub, and feel a bit like a

marshmallow -rounded and soft. He may sit in the " W " position. If a

child has severe hypotonia -he may look a bit like a rag doll (those

are the children however that are spotted early however) -gravity

just pulls them down. For a school age child -look for the child who

can't sit at the desk long before leaning down on it. The child who

when waiting on line will either lean or sit down. The child (or

adult) with rounded shoulders who is always being told " stand up

straight! " or " sit up! " etc. "

http://www.cherab.org/information/speechlanguage/parentfriendlysoftsig

ns.html

While mild low tone is not something to freak out over as it's

something that can be treated quite effectively through occupational

and speech therapies- a carnitine deficiency is another story and it

doesn't sound like you are in the right hands yet to help you with

this. The person that gave you the lab results should have explained

what this meant to you -and you would have known that you HAVE to get

the carnitine supplement into your child because you have to now that

you know.

It's good that you didn't supplement (try to supplement) prior to

blood testing this this important amino acid. Just a side note first

to the new parents: this message is not to scare anyone-just the

facts that we all need to be aware of and it appears many are not -

even many of these NACD or DAN people that just recommend it and

don't provide all the facts about it. It's easy to find credible

information if you search PubMed or even just google it. For example

here's just one site that comes right up

http://www.emedicine.com/ped/topic321.htm momresearch posted a

couple of really great articles here and Tina who is a moderator here

has a link or file section on what medical doctors to see and why as

her son is another tested low.

A carnitine deficiency is one reason that it's critical to include

mainstream MDs in your child's treatment if they are diagnosed with

apraxia or autism. (dan people are not all medical doctors -some are

social workers)

If one was to just supplement their child with carnitine without

testing for a deficiency first -which you could and from what is

posted here some " professionals " recommend to " try " -one would not

know if their child was carnitine deficient. Not all professionals

are golden and not all are medical doctors -and even if both -people

make mistakes and recommending carnitine supplements without blood

testing or not letting parents know the severity of a deficiency are

both mistakes.

Unlike other supplements -a carnitine deficiency could come with the

most severe consequence over time since carnitine deficiency is

associated with sudden death. The good news is that at least you'll

know early -most people don't find out their child was deficient in

carnitine until it's too late. (we all heard about that football

player in HS with the sudden heart attack) Also how else are you

going to guarantee that not only are you going to give and keep

giving your child this supplement which they 'have' to take -but

that your child will know to monitor with his doctor and continue to

supplement if needed perhaps the rest of his or her life? This is

why you want to investigate this aggressively with a geneticist.

There are a few who have been recommended here as I understand that

there are not yet enough geneticist who specialize in metabolic or

mitochondrial disorders.

If found to have a carnitine deficiency, like your child, you would

want to take your child to a medical doctor that was knowledgeable

about what that means as this is not something to take lightly. It's

good to get the prescription form of carnitine so you know the

quality, correct dosage -overseen by an MD. Also once tested low in

caritine you would also want to discover why by taking your child to

a geneticist who specializes in metabolic disorders. I believe based

on the findings of blood analysis from this group that any child

going ahead diagnosed with apraxia or autism should be tested for a

carnitine deficiency. As you'll be hearing more about this soon from

Dr. -the numbers of children that tested low in this

amino acid were off the charts. Typically it's a rare disorder

affecting one in 20 to 40,000. This was also the reason I took my

son Tanner for all the blood testing -to test for this one deficiency

since it can be so severe if left untreated.

Here's some quotes from Dr. who is head of fellowship

research at her hospital -a pediatrician -and mom to an apraxic child

who also tested to be carnitine deficient. Below this is an archive

on this which includes all the testing which you can share with your

child's medical doctor to secure the testing. We did this with our

son's " regular " pediatrician and all the blood word was covered by

BC/BS.

" Impact of carnitine supplements may not be clinically obvious - but

could be

helping strengthen heart muscle. Low levels are associated with a

floppy

dilated weak heart, and when it approachs 10-20% of normal, sudden

death can

occur. Carnitine is essential for normal cell/mitochondria function.

It

allows fatty acids to get transported into the mitochondria (or the

battery

of the cell). Major problems if this is not working properly. So you

may be

getting benefits that you don't obviously see. One does not want to

run

around with a severe carnitine deficiency and not treat it.

Carnitine and Carnosine are 2 TOTALLY different supplements.

Carnitine plays a key role in transfering long-chain fatty acids

into the mitochondria.

There has been some research done on carnoSine (amino acids

histidine and alanine), and carnaware has carnoSine + vit E + zinc.

There have been some preliminary studies that show benefit of

carnaware in autism and other speech disorders. THere are many

members with personal experience with both carnosine and carnoware.

I suspect the vitamin E of carnoware is contributing to benefits,

based on what vit E alone can do.

Without sufficient CarniTine...the mitochondria (or

cell " batteries " ) don't run very well. There can be symptoms from

muscle weakness, heart problems to severe brain and metabolic

abnormalities and in some (rare) cases... to the extreme of sudden

death from carnitine deficiency...depending on how severe and the

exact cause.

I know very little about Carnosine...was planning to try it some

day, but then discovered vitamin E. Carnitine is harmless. If you

take too much, you will smell bad. Otherwise, harmless. It can cause

stomach upset, so should be taken with food. - "

Carnitine deficiency is typically rare -around 1 in 40,000. I don't

know if the deficiency your child has is considered severe or not but

either way I'd check it out. In this group out of the few that did

blood draws an alarmingly high number tested low in this amino acid

and that's concerning for a number of reasons. The main one is that

there may be no sign of a carnitine deficiency -but it can have

serious affects if left untreated. If discovered consider it a

blessing as most don't know about this deficiency until it's " too

late " and it's easily treated by prescription carnitine.

The suggestion is that if a child tests low on carnitine to take him

to a geneticist who is a metabolic specialist for a complete work-

up. There have been a few suggestions for particular MDs posted

here. Many of us including me took our child to get tested because

we respect Dr. who is a researcher/pediatrician and

mom to a 3 year old apraxic child. Many of us have children that are

considered doing " well " today -so in other words no sign that there

was any underlying issue. Besides -most don' consider apraxia a

disorder that has any serious health tone to it.

We were fortunate that Dr. is part of this group. I

am also fortunate in that my son Tanner tested normal -but I

recommend this testing for all here if the diagnosis is apraxia or

autism. I had the tests ordered through Tanner's pediatrician and

all was covered by our BC/BS insurance. Just share all the

information with your pediatrician. And , since your child

already tested low in carnitine -I'm sure it won't be an issue to

secure a referral to a specialist.

Below are a few archives on this -but there's much in the archives

here and all over the internet. Just search " carntine deficiency "

CarnoSine and CarnoTine are both amino acids -but different -and not

just the letter S or T. Many have supplemented with the amino acid

carnosine (or Carn-Aware)or read some of the research on this

published by ped neurologist Dr. Chez, and that's fine. Not all

supplement with the amino acid carnotine -but if you wanted to " try "

it -you 'do' want to get blood draws prior to supplementation to see

if there is a deficiency because:

From a direct quote from pediatrician/parent member here Dr.

from an email to me (not to scare anyone...but)

" No harm in supplements (ie very safe - if you give to much one

starts to smell fishy - ironically) and yes you could just start

supplementing without any health concerns. But honestly - a

carnitine deficiency is something you would want to identify first -

before supplementing. The results from bloodwork will not be

helpful otherwise once supplementing - since it could be normal.

One doesn't just have a carnitine deficiency for no reason. This is

something that should be worked up - aggressively, medically. So I

would seriously consider getting him checked prior to supplements "

and from the same email another clip:

" The benefits of carnitine (like those on the heart) - may not be

obvious (in speech and muscle tone -the sort of thing we are looking

for) and you wouldn't know you were making a difference. The

carnitine deficiency that ph had could have led to serious

cardiac complications over the next few years if not picked up. "

R. , MD

Attending Physician

Director of Fellowship Research

Department of Emergency Medicine

Children's Hospital & Research Center at Oakland

747 52nd Street

Oakland, CA 94609

I really can't " advice " anyone. A lot of this new info is just that -

very new, and totally anecdotal. Your child is very young to make the

diagnosis of apraxia - so it is important for you to get a good

neurodevelopmental ped eval to help you set off in the right

direction, since intervention does differ depending on the diagnosis.

But just because the info isn't published...it doesn't make it

invalid. But all this needs to be confirmed in a clinical trial

before there will be broader applications and true recommendations

made.

What I can tell you that we have learned:

2. Carnitine deficiency is common among our kids with apraxia. This

is also reported in the autism literature as common in ASD. If a

child has low tone, part of the work-up should include plasma

carnitine (total and free), and acetyl-carnitine, and a complete

metabolic panel, CBC (basic labs).

Re: ABSTRACT-Carnitine Deficiency

Below are the tests that Dr. has suggested for our

children diagnosed with apraxia or autism. For me my main concern

was testing for carnitine deficiency due to the severity of

it..sudden death

(and the much higher than usual number testing low in carnitine here)

-but

if you are getting your child tested may as well test for all she

suggests. I would take the abstract with you to show your child's

pediatrician. My son pediatrician didn't question sending Tanner for

all the blood work once I shared why we wanted to have him tested.

It was all covered by my insurance BC/BS The fish oils and vitamin E

won't affect the carnitine test -and most of us have our children on

these oils prior to the blood draw -just make sure you don't

supplement with carnitine prior to the blood draw.

Celiac panel

Vitamin E plasma levels (alpha and gamma)

Other fat soluble vitamins (A, D, K) (Many have fat malabsorption)

Metabolic studies: Lead level, CBC, complete metabolic panel, plasma

quant amino acids

carnitine (total, free, esters), acyl-carnitine panel (plasma),

urine organic acids, lactic acid, comprehensive fatty acid profile

(C8-26) -

a sendout to Mayo clinic - but other labs do it too.(rule out

metabolic disorder as cause of severe neurodevelopmental disorder -

apraxia/dyspraxia).

Celiac pane includes:

serum for

1) human tissue transglutaminase antibodies (TTG),

2) antiendomysial antibodies (EMA),

3) anti-gliadin IgA antibody,

4) anti-gliadin IgG antibody, and

5) total immunoglobulin A.

Consider below:

Supplement with omega 3/6/9 (2 caps) + 1 EPA given 2-3 times a day.

(Twice a

day may be sufficient with Vit E)

Vit E (alpha " d " tocophorol) NOT synthetic " dl " 400 IU

Gamma tocophorol 200-300 mg day

L-Carnitine if testing shows a deficit.

Consider a trial of gluten/casein free diet, but I would give the

above supplements at least a month or 2, since the diet may not be

necessary? Unless celiac positive, of course. Then gluten-free is

essential.

note from -and then the abstract is below:

These vitamin levels can be drawn by Quest or whatever lab your

insurance covers. They are just probably a sendout. YOu need it

ordered by your MD.

Impact of carnitine supplements may not be clinically obvious - but

could be helping strengthen heart muscle. Low levels are associated

with a floppy dilated weak heart, and when it approachs 10-20% of

normal, sudden death can occur. Carnitine is essential for normal

cell/mitochondria function. It allows fatty acids to get transported

into the mitochondria (or the battery of the cell). Major problems if

this is not working properly. So you may be getting benefits that you

don't obviously see. One does not want to run around with a severe

carnitine deficiency and not treat it.

I had been wondering whether the EPA benefits we saw (which was the

most dramatic of the fish oil)...was vitamin E (even though it was

only 15 IU a dose, or an additional 45 IU a day). But we saw

regression within 48 hours off EPA when I ran out, even though I gave

an additional 1/4 tsp of EFA liquid to make up for it while I reorder

more online. ph lost ALL the gains he had from EPA. So I

wonder...was it the higher EPA dose, or was it the vit E? But even

the increased vitamin E switching from liquid to capsules over July 4

weekend created such a dramatic surge in ph that we were in

search of the explanation...which only came after he started

regressing again a few days after we switched back to the liquid form

(cutting his vitamin E dose by 90 IU a day). So lower doses seemed to

make a HUGE difference. However we didn't get a development of pain

sensation until we went to much higher doses. Fascinating.

-

Print out the following abstract and bring with you

I have great news! The below abstract has been accepted at the Late-

Breaking Platform at the Pediatric Academy Society meetings in

Toronto this May 2007 for an oral presentation. This is one of the

largest annual pediatric meetings and many general pediatricians will

be there. This is an incredible opportunity to get information on

apraxia out to the general pediatric community. This session is also

well attended by the media which will likely pick up this story.

Hopefully the next step will be a funded clinical trial! Marilyn Agin

is going to join me there. Anyway this is something you can now print

out for your pediatrician. It will be published in the PAS/AAP

meeting proceedings - so now at least " something " will be published.

We have a long way to go, since this is still the summary of

anecdotal stories, but it is an excellent start. Many thanks to all

the families who emailed me clinical information after trying vit E +

omega 3. You have helped to move this forward. I stopped counting

once we hit 50 families. I know there are dozens more out there now.

And of course, many thanks to

[Guest guest]

I had the exact same issues with mouthing. everything.. with my then 4 year

old adopted daughter. we included a vitamin with added zinc now we do not

have that problem and we also include a tablet of zinc each night along with

her omegas and vitamin E.we didn't have a problem with tongue sucking but

that could she is experimenting with new nerve sensations in her mouth..

Roxanne

_____

From:

[mailto: ] On Behalf Of td232006

Sent: Tuesday, April 22, 2008 3:40 PM

Subject: Re: [ ] Re: New To Board

The first blower, I think it was like a pre-blower from Talk Tools got my

daughter blowing in general and then she was able to blow bubbles.

For mouthing alot of objects I found that increasing zinc helped this. When

we did a blood test I found out that her zinc levels were low. My dd usually

does not mouth things anymore after I increased the zinc. What I have not

been able to stop yet is the tongue sucking she does on and off. Any

suggestions on this from anyone ?

Demi

Cristal <gtzellner (DOT) <mailto:gtzellner%40> com> wrote:

our therapist actually told me to look at talktools.net and purchase their

whistles! I'm goign to look into that today... She loves bubbles but i have

to blow them for her - all she wants to do is eat the wand thing, so looking

for a way for her to learn how to blow her own bubbles!

Does anyone else have issues with their child MOUTHING everything????? It

doesn't matter what it is, my child puts everything in her mouth.. Is that

part of hte apraxia?

Cristal

gtzellner (DOT) <mailto:gtzellner%40> com

[childrensapraxiane t] Re: New To Board

>

> that's great she's in ST, OT and PT! If she can't yet do

> simple signs it's good that she's able to do simple picture

exchange

> for now. You'll find the story about " a mother " who drew a menu for

> her apraxic child when he couldn't tell her what he wanted for

> breakfast each day -that was me! What a difference a corny picture

> menu makes!

>

> There are other speech therapies that may be helpful for the

apraxia

> in addition to the PROMPT -such as Kit 1 of the Kaufman Kit

> http://www.speechvi lle.com/KaufmanK itArticle. html

>

> Here's an example for the word " octopus " On one side will be a

> brightly colored happy drawing of an octopus. You would start at

the

> bottom and work up through the heirarchy of speech development to

> make it easier for your daughter to attempt words that right now

may

> be beyond her grasp.

> octopus

> ok-to-puh

> ah-to-puh

> ah-puh

>

> It's a brilliant method. Not all that follow one approach let us

> know about all the others out there which is why I tended to favor

> speech therapists that could pull from a bag of tricks vs. just one

> method.

>

> Then again once you start the fish oils you will probably find

surges

> no matter what methods they are using! In addition to apraxia it's

> not unusual to have co existing tonal issues. You don't mention

> hypotonia -has mild low tone been pointed out by anyone? In the

> mouth are you noticing any oral motor issues? Can she imitate funny

> faces on command? If you tell her to smile when you take her

picture

> can she do that on command? When she turned 2 did she blow the

> candles out on her birthday cake by herself?

>

> What about feeding? Does she have any issues with stuffing her

mouth

> or drooling? Many apraxic children do well with oral motor

therapies

> in preschool years even though I understand there's a political

> debate in the speech therapy world as to that. In theory they can

> debate it but in reality I've first hand have witnessed with both

of

> my boys how oral motor therapy can be very beneficial.

>

> It does sound like your child has global issues but you want to

know

> if it's all due to motor planning (apraxia/dyspraxia) or weakness

> (hypotonia if in the body -dysarthria if in the mouth area)

>

> My son Dakota had global delays at 2 as well. He was in therapy

from

> 3 weeks old for torn neck muscles, crushed facial nerves and global

> delays from a traumatic forceps delivery. His therapy was done at a

> number of pediatric neurologists offices but the one I remember the

> most was Dr. Trevor DeSouza's office. With all the therapies (we

> went big time into multisensory therapies) he was in a mainstream

> preschool by the time he was 3 because even though there were still

> some delays -he no longer qualified for early intervention through

> the school. This was back before I knew about fish oils of course -

> didn't learn about them until Tanner (my apraxic child) came along.

>

> Both my boys today are mainstreamed and if you saw them today -or

> even years ago at this point -you'd have no idea where they were at

> 2. Children are so remarkable in that way many times. I do hope

> that months or years from now you can let us know the same great

> update!

>

> Here's Tanner's " Talking Page " http://www.debtsmar t.net/talk/

tanner.html

>

> =====

>