Frustrated

[Guest guest]

To Alisha-Zeb's mom:

How is the carnosine working for your son? Have you seen a positive change?

Frustrated

Thanks to those who replied, I was hoping for more information but I

know everyone is busy with the holidays. Dana how much and what kind

of Vitamin A and Carnitine?

To the person wanting to know about Carnosine, I get it at Kirkman's

200 mg capsules, one in the a.m. and one at supper in applesauce. I

started at a lower dose but he was younger at the time.

I haven't read Mr. Greenspan's Book but I will. ANy other information

will greatly be appreciated. ALisha-Zeb's mom

[Guest guest]

> Thanks to those who replied, I was hoping for more information but I

> know everyone is busy with the holidays. Dana how much and what kind

> of Vitamin A and Carnitine?

I don't remember your initial message. For vitamin A, you can give TwinLabs

Allergy A or cod liver oil. Start with 5000 IU per day, you

can work up from there if required.

For carnitine, start with 250 mg and work up to 500 mg. This is recommendations

by others, because when I tried it my kids showed

no improvement. But I understand it is helpful for low muscle tone issues.

Good luck.

Dana

[Guest guest]

Hi !

I am so glad you were able to get that off your chest....whew!

Hey, there are people in this world that are just plain ignorant.

Period. Just keep you chin up and know that you are doing the best

thing for your daughter. Feel free to rant anytime! We are here

for you!!

Hugs,

Jill and (7 mos, DOC 5/20)

Dallas

> hi all,

> maybe i am in a bad mood today or maybe this " journey is

> finally taking it's toll on me. between a couple of " well meaning "

> relatives telling me how " sorry they are " and " how sad they are " to

> see kathryn wearing " that awful helmet thing " and people in the

store

> staring, i just have my undies in a wad!!! how dare people! i just

> want to tell them all to go piss off!! no one needs to feel sorry

for

> my daughter- i don't! it is just an experience we have to go thru.

no

> one felt sorry for me when i broke my foot, they just asked how it

> happened. is there some kind of stigma because the band is on her

> head and not a brace on her foot. people would have no problem

asking

> questions if it was a cast on her leg. and another thing...i am so

> tired of the words " developmental delays " as far as the denver list

> goes (it is a list doctors use to chart a childs progress) kathryn

is

> just fine, so she doesn't walk yet...who cares! i didn't walk until

i

> was nearly 2!! and other than a few rants now and then i am just

> normal!!...lol. i am sad to see that we live in a society where we

> judge and compare our children and ourselves by everyone else's

> standards. my husband and i suffered miscarraige after miscarriage

> for over 4 years, finally got pregnant with the help of fertilty

> pills, were pregnant with twins but lost one in the 9th week,and i

> almost died during childbirth, so no one needs to feel sorry for us

> or kathyrn, as far as i am concerned we are blessed beyond blessed

> and if kathryn has to wear this miracle of technology so be it, at

> least i know i am doing what ever i can to give my child a good

life.

>

> whew!!! thank you for listening, i had to get that off my chest and

> kathryn just did not want to listen!! lol

>

> i just want to say to everyone on this site and to all your

beautiful

> children...Thank you! for being here to listen and to answer and to

> show others this journey does not have to be a nightmare. you are

all

> truly blessed angels.

>

> kelly(mom to kathryn,plagio/brachy/tort,banded 5/03,texas)

[Guest guest]

Sherry,

this is a support group for feeding issues. They seem to be very

helpful with my son. Please join and ask your question there too.

feeding/

>

>

> My Will is 3 years and 7 months. He is non-verbal! He doesn't

> sign. He uses PECS only when it pleases him. He is capable, but

> seems to prefer manipulating others into doing what he wants.

He's

> not bad by any means, but boy is he sneaky. He manages to

> communicate basic stuff. He's been in Speech therapy since before

> he was a year old. This is our 3rd. I feel like the first year

was

> really a waste as he and that ST just didn't get along. He did a

> great job of manipulating her. The second was amazing! However,

> she was with Early Intervention. The 3rd is working so hard to

> figure him out. He is smart. THere are NO pictures either nouns

or

> action verbs taht he cannot identify when asked. He does have

great

> receptive skills! He follows directions as much as any 3 year old

> does. I'm working to get im an ACC eval. I " m just at a loss!

> There must be someone somewhere who can help! He does have fine

and

> gross motor issues! He is walking well with a walker. His fine

> motor skills are coming along. He hates to eat! He would quite

> literally starve to death given this choice.

> SO now what?! He goes to a preschool that specializes in dev

> delays. He gets ot and st as often as possible there. He has 3x

> scheduled, but the go see him when they can.

> I'm just so glad someone understands!

>

> Sherry Mom to Will!

[Guest guest]

Hi Sherry and ,

Here are just a few archives from this group on feeding and speech

or sensory issues -there are many more with suggestions. Many here

go through this in one way or another. I did end it with a link to

a feeding support group through -so where you left off!

From: " kiddietalk " <kiddietalk@...>

Date: Thu Dec 4, 2003 8:58 pm

Subject: Re: Question regarding eating constantly.... kiddietalk

Hi ,

I'm not sure how a child can be inactive and eating all

day " stuffing his mouth " and not gain any weight, but if it's

contagious -you can make a fortune by bottling it for the Holidays.

Seriously -sounds like a good question for the doctor to make sure

it's not a problem with digestion.

My son Tanner went through the mouth stuffing part before we knew he

had oral and verbal apraxia, low tone and sensory integration

dysfunction - and before he received appropriate therapies for

them. We have some great oral motor at home exercises in The Late

Talker book -but here are some online in case you don't have the

book yet (which you can pick up at a bookstore or library):

Two articles from Tanner's one SLP - A. Ortega, M.S., CCC-SLP

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

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

Mouth stuffing can also be an important sign of sensory or motor

difficulties in oral-motor control. When the mouth is fully stuffed

with food, children obtain more sensory information about the

boundaries of their mouths and the presence of food in the mouth.

http://www.new-vis.com/fym/papers/p-feed11.htm

=====

[Guest guest]

Hi Sherry,

your email made me tear up! I only recently know

exactly what you are feeling. My son will be 4 in May

and has very little vocab still working on 2 word

phrases, he is making great progress, although only

age appropriate he's more than a year behind. The

problem is I also have another boy who will be 3 in

May. I cannot beleive how much he is talking----HE

WONT STOP!!!! I can have meaningfull conversations

with him! I get down when I think where one boy is

compaired to the other and my husbnand has to bring me

back to reality and remind me that only a year ago my

4 year old couldn't say mommy or iluvyooo. I am now

also getting the looks from people who don't know our

situation. Okay I feel better just getting it out. I

have no cure, but I think as long as you are getting

progress all will be well!

Faneesha

--- Sherry <sherrymilner@...> wrote:

>

>

> My Will is 3 years and 7 months. He is non-verbal!

> He doesn't

> sign. He uses PECS only when it pleases him. He is

> capable, but

> seems to prefer manipulating others into doing what

> he wants. He's

> not bad by any means, but boy is he sneaky. He

> manages to

> communicate basic stuff. He's been in Speech

> therapy since before

> he was a year old. This is our 3rd. I feel like

> the first year was

> really a waste as he and that ST just didn't get

> along. He did a

> great job of manipulating her. The second was

> amazing! However,

> she was with Early Intervention. The 3rd is working

> so hard to

> figure him out. He is smart. THere are NO pictures

> either nouns or

> action verbs taht he cannot identify when asked. He

> does have great

> receptive skills! He follows directions as much as

> any 3 year old

> does. I'm working to get im an ACC eval. I " m just

> at a loss!

> There must be someone somewhere who can help! He

> does have fine and

> gross motor issues! He is walking well with a

> walker. His fine

> motor skills are coming along. He hates to eat! He

> would quite

> literally starve to death given this choice.

> SO now what?! He goes to a preschool that

> specializes in dev

> delays. He gets ot and st as often as possible

> there. He has 3x

> scheduled, but the go see him when they can.

> I'm just so glad someone understands!

>

> Sherry Mom to Will!

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Thanks! So all is not lost! It's just so hard to figure out which therapy or

method is the best. It's nice to know that kids do still start to talk even

this late!

Sherry

Faneesha Russo <reddallover@...> wrote:

Hi Sherry,

your email made me tear up! I only recently know

exactly what you are feeling. My son will be 4 in May

and has very little vocab still working on 2 word

phrases, he is making great progress, although only

age appropriate he's more than a year behind. The

problem is I also have another boy who will be 3 in

May. I cannot beleive how much he is talking----HE

WONT STOP!!!! I can have meaningfull conversations

with him! I get down when I think where one boy is

compaired to the other and my husbnand has to bring me

back to reality and remind me that only a year ago my

4 year old couldn't say mommy or iluvyooo. I am now

also getting the looks from people who don't know our

situation. Okay I feel better just getting it out. I

have no cure, but I think as long as you are getting

progress all will be well!

Faneesha

[Guest guest]

Yes, it's OK to use more than one speech therapist from different clinics if

that's all you

can find available, we've had private and school therapists simulataneously.

And YES we

are in the middle of an epidemic of speech problems and autism.

Peace,

Kathy E.

>

> Is it ok to use more than one speech therapist from different clinics?

> I am so envious of people who's kids are talking and have been released

> from therapy because they got 2+ hours of speech a week......I can't

> even get that because everyone is booked up and I can only get one

> session a week, and everytime I hear about some mom who's kid is seeing

> a certain top therapist who I wish my son was seeing, I could just

> scream. Has autism/speech delays in children increased in the past

> couple of years? Right now I am feeling kind of hopeless...my son is

> saying 3-4 word sentences now, but still mumbles unintelligibly.

>

> Patty

>

[Guest guest]

thats what I do. I take my daughter to a private speech therapy once a week

and to ish Rite another day. We don't pay for ish Rite Speech

Tharapy place. Call your local ish Rite and ask them. Both places are

wonderful.

As far as them being busy, I was just having this conversation with our

private therapist and they are extremely busy. Too many kids with too many

speech problems and not easy problems to be fixed. I wonder whats going on

too.

Houry

[ ] Frustrated

Is it ok to use more than one speech therapist from different clinics?

I am so envious of people who's kids are talking and have been released

from therapy because they got 2+ hours of speech a week......I can't

even get that because everyone is booked up and I can only get one

session a week, and everytime I hear about some mom who's kid is seeing

a certain top therapist who I wish my son was seeing, I could just

scream. Has autism/speech delays in children increased in the past

couple of years? Right now I am feeling kind of hopeless...my son is

saying 3-4 word sentences now, but still mumbles unintelligibly.

Patty

[Guest guest]

HELLO PATTY: I'M COMING IN ON THE END OF THIS BUT I CAN TELL YOU THAT IF

EVERYONE IS TOO BUSY TO SEE YOU.....MAKE A CALL TO A LOCAL CONGRESSWOMAN (YES

WOMAN) TELL HER WHAT'S HAPPENING AND I PROMISE YOU THAT SHE WILL UNDERSTAND AND

SHE WILL GET YOU AN APPOINTMENT QUICKER THAN IF YOU TRY ON YOUR OWN. JUST HAVE

DATES AND TIMES OF YOUR CALLS SO YOU CAN GIVE HER FACTS WHEN YOU CALL. GOOD

LUCK. BARBARA (MY GRANDSON HAS VERBAL APRAXIA AND I'M LEARNING SO MUCH FROM THIS

SUPPORT GROUP.)

nicmat22003 <prabito@...> wrote: Is it ok to use more than one speech

therapist from different clinics?

I am so envious of people who's kids are talking and have been released

from therapy because they got 2+ hours of speech a week......I can't

even get that because everyone is booked up and I can only get one

session a week, and everytime I hear about some mom who's kid is seeing

a certain top therapist who I wish my son was seeing, I could just

scream. Has autism/speech delays in children increased in the past

couple of years? Right now I am feeling kind of hopeless...my son is

saying 3-4 word sentences now, but still mumbles unintelligibly.

Patty

[Guest guest]

I'm intrigued by this statement:

" YES we are in the middle of an epidemic of speech problems and

autism. "

Do you think there's a connection between the two? What do you

think is the cause?

> >

> > Is it ok to use more than one speech therapist from different

clinics?

> > I am so envious of people who's kids are talking and have been

released

> > from therapy because they got 2+ hours of speech a week......I

can't

> > even get that because everyone is booked up and I can only get

one

> > session a week, and everytime I hear about some mom who's kid is

seeing

> > a certain top therapist who I wish my son was seeing, I could

just

> > scream. Has autism/speech delays in children increased in the

past

> > couple of years? Right now I am feeling kind of hopeless...my

son is

> > saying 3-4 word sentences now, but still mumbles unintelligibly.

> >

> > Patty

> >

>

[Guest guest]

My son sees a private therapist 2 hours per week and gets two hours with a

public school therapist in classroom each week. There hasn't been a

problem for him. He's extremely adaptable. I also don't feel the public

school therapist is doing anything for him (his teachers agree with that

assessment - she's a wonderful person, but we don't see anything that's

happening that connects to progress he's made compared to his private

therapy which is clearly directly related!) Even in private therapy he

sees two therapists and he's been fine. His primary private therapist is

directly mentored by the specialist who sees him when she can. They follow

the same plan and do the same thing. In an ideal world his school

therapist would be right there in the mix as well, but since she is not

Prompt trained she can't do the same techniques that work so well with him.

Oh and even with 4 hours a week for the past 2.5 months and two hours a

week since last November, he's no where close to being released from therapy.

Miche

At 12:21 AM 5/6/2006, you wrote:

>Is it ok to use more than one speech therapist from different clinics?

>I am so envious of people who's kids are talking and have been released

>from therapy because they got 2+ hours of speech a week......I can't

>even get that because everyone is booked up and I can only get one

>session a week, and everytime I hear about some mom who's kid is seeing

>a certain top therapist who I wish my son was seeing, I could just

>scream. Has autism/speech delays in children increased in the past

>couple of years? Right now I am feeling kind of hopeless...my son is

>saying 3-4 word sentences now, but still mumbles unintelligibly.

>

>Patty

[Guest guest]

To give a short answer: chemicals. That includes thimerosal in immunizations,

stuff we

blithely spray around the house to make it smell better, chemicals on food,

water, in the

air, and drugs used recreationally. My PhD is in ecology. I think we are

almost getting to

the point where the human species is having difficulty in reproducing ourselves.

I think

the fall of Rome, which many historians think was due to lead plumbing, is

something we

should take very seriously. Remember the slogan of the post WWII generation was

(was it

Dow Chemical?) " Better living through chemistry " ? Well, we've managed to

disrupt the

ecosystem to the point that it's affecting us seriously and gets worse with each

generation.

Many of these chemicals are stored in fat and even present in human breastmilk.

You

asked. Off soapbox now.

Peace,

Kathy E.

>

> I'm intrigued by this statement:

>

> " YES we are in the middle of an epidemic of speech problems and

> autism. "

>

> Do you think there's a connection between the two? What do you

> think is the cause?

>

>

[Guest guest]

http://www.cherab.org/news/Save.html

(Wow is this my shortest answer ever or what?!!)

=====

[Guest guest]

If you can, hire an advocate. It's the best thing I've ever done for my twins

boys who are apraxic

barbara robbie <kjrobbie2003@...> wrote: HELLO PATTY: I'M COMING IN ON

THE END OF THIS BUT I CAN TELL YOU THAT IF EVERYONE IS TOO BUSY TO SEE

YOU.....MAKE A CALL TO A LOCAL CONGRESSWOMAN (YES WOMAN) TELL HER WHAT'S

HAPPENING AND I PROMISE YOU THAT SHE WILL UNDERSTAND AND SHE WILL GET YOU AN

APPOINTMENT QUICKER THAN IF YOU TRY ON YOUR OWN. JUST HAVE DATES AND TIMES OF

YOUR CALLS SO YOU CAN GIVE HER FACTS WHEN YOU CALL. GOOD LUCK. BARBARA (MY

GRANDSON HAS VERBAL APRAXIA AND I'M LEARNING SO MUCH FROM THIS SUPPORT GROUP.)

nicmat22003 <prabito@...> wrote: Is it ok to use more than one speech

therapist from different clinics?

I am so envious of people who's kids are talking and have been released

from therapy because they got 2+ hours of speech a week......I can't

even get that because everyone is booked up and I can only get one

session a week, and everytime I hear about some mom who's kid is seeing

a certain top therapist who I wish my son was seeing, I could just

scream. Has autism/speech delays in children increased in the past

couple of years? Right now I am feeling kind of hopeless...my son is

saying 3-4 word sentences now, but still mumbles unintelligibly.

Patty

[Guest guest]

There is also speculation about partially hydrogenated fats (trans

fats) which are found in almost every fast food and junk food,

especially sweets. Trans fats actually block the EFAs from doing

their job in the brain, and the brain is what affects these speech

and autism issues.

Here are a couple of sites:

http://www.bantransfats.com/

http://www.autismfries.com/

-kim

>

> >

> > I'm intrigued by this statement:

> >

> > " YES we are in the middle of an epidemic of speech problems and

> > autism. "

> >

> > Do you think there's a connection between the two? What do you

> > think is the cause?

>

__________________________________________________

[Guest guest]

That's scary, awful, frustrating and depressing. I wonder if there

is any place left to live that's clean.

>

> http://www.cherab.org/news/Save.html

>

>

> (Wow is this my shortest answer ever or what?!!)

>

> =====

>

[Guest guest]

What is ish Rite?

Houry Partridge <noubar2@...> wrote: thats what I do. I take my daughter

to a private speech therapy once a week

and to ish Rite another day. We don't pay for ish Rite Speech

Tharapy place. Call your local ish Rite and ask them. Both places are

wonderful.

As far as them being busy, I was just having this conversation with our

private therapist and they are extremely busy. Too many kids with too many

speech problems and not easy problems to be fixed. I wonder whats going on

too.

Houry

[ ] Frustrated

Is it ok to use more than one speech therapist from different clinics?

I am so envious of people who's kids are talking and have been released

from therapy because they got 2+ hours of speech a week......I can't

even get that because everyone is booked up and I can only get one

session a week, and everytime I hear about some mom who's kid is seeing

a certain top therapist who I wish my son was seeing, I could just

scream. Has autism/speech delays in children increased in the past

couple of years? Right now I am feeling kind of hopeless...my son is

saying 3-4 word sentences now, but still mumbles unintelligibly.

Patty

[Guest guest]

http://www.srmason-sj.org/council/temple/booklet/cldp.htm

check your state and call them. Since it is free there may be a wait but it

is worth it.

Houry

RE: [ ] Frustrated

What is ish Rite?

Houry Partridge <noubar2@...> wrote: thats what I do. I take my

daughter to a private speech therapy once a week

and to ish Rite another day. We don't pay for ish Rite Speech

Tharapy place. Call your local ish Rite and ask them. Both places

are

wonderful.

As far as them being busy, I was just having this conversation with our

private therapist and they are extremely busy. Too many kids with too

many

speech problems and not easy problems to be fixed. I wonder whats going

on

too.

Houry

[Guest guest]

Thanks for the info:)

Patty

Houry Partridge <noubar2@...> wrote:

http://www.srmason-sj.org/council/temple/booklet/cldp.htm

check your state and call them. Since it is free there may be a wait but it

is worth it.

Houry

RE: [ ] Frustrated

What is ish Rite?

Houry Partridge <noubar2@...> wrote: thats what I do. I take my

daughter to a private speech therapy once a week

and to ish Rite another day. We don't pay for ish Rite Speech

Tharapy place. Call your local ish Rite and ask them. Both places

are

wonderful.

As far as them being busy, I was just having this conversation with our

private therapist and they are extremely busy. Too many kids with too

many

speech problems and not easy problems to be fixed. I wonder whats going

on

too.

Houry

[Guest guest]

Sorry the pics did not post. You can find them in the S album under Saylor. I just don't know if I am being a bit obsessive or if she really does need a band. What makes it equally difficult is the lack of understanding with some of our relatives and even our pediatrician! Thanks for your responses. Symborski Media Specialist stacy_holcombe@... A library is a hospital for the mind. Anonymous

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

Hello. I looked at her pics and I do see some brachy and also a

little bit of facial (and possibly ear) asymmetry. Hopefully you

will be able to get a Dr to listen to you. Just remember don't let

them bully you and push to get help for her.

Good luck and try not to worry too much about what others (relatives

and friends) have to say. After all... she is YOUR child, and you

don't want to regret it later if you do nothing for her and her head

doesn't improve on its own.

Good luck and keep us updated.

Jen

(almost 2), tort resolved, Hanger Band Grad

(4.5 years)

>

> Sorry the pics did not post. You can find them in the S album

under Saylor. I just don't know if I am being a bit obsessive or if

she really does need a band. What makes it equally difficult is the

lack of understanding with some of our relatives and even our

pediatrician!

>

> Thanks for your responses.

>

>

> Symborski

> Media Specialist

> stacy_holcombe@...

> A library is a hospital for the mind.

> Anonymous

>

>

>

>

> ---------------------------------

> Talk is cheap. Use Messenger to make PC-to-Phone calls.

Great rates starting at 1¢/min.

>

[Guest guest]

Hi ,

I looked at the pics - what a cute girl. To me it looks like a band

would be good for her. It does look like shes a little wider and flat

in back (my daughter has brachy too).

Just do what you think is right. My sister-in-law tried to talk us out

of banding, but I'm so glad we did it. She does't say anything now

that we're doing it. Good luck.

=christine

mom to sydney/ 7 mo / 5-31-06

>

> Sorry the pics did not post. You can find them in the S album under

Saylor. I just don't know if I am being a bit obsessive or if she

really does need a band. What makes it equally difficult is the lack

of understanding with some of our relatives and even our pediatrician!

>

> Thanks for your responses.

>

>

> Symborski

> Media Specialist

> stacy_holcombe@...

> A library is a hospital for the mind.

> Anonymous

>

>

>

>

> ---------------------------------

> Talk is cheap. Use Messenger to make PC-to-Phone calls.

Great rates starting at 1¢/min.

>

[Guest guest]

I took a look at the pictures and could see the overall flattening on

the back. If you live anywhere near a Cranial Technologies office I

would recommend going there and asking for measurements. Our son had

some assymmetry and flattening and the measurements were the most

telling for me in being able to figure out how severe it really was.

You may be able to do the cephalic index measurement yourself to get a

rough idea. Here are some sites that have more details on the

measurements and what would be considered severe enough (at least

according to some insurance companies)

http://www.aetna.com/cpb/data/CPBA0379.html

http://www.cigna.com/health/provider/medical/procedural/coverage_positions/medic\

al/mm_0056_coveragepositioncriteria_cranial_orthotic_devices.pdf

http://medpolicy.bluecrossca.com/policies/OR-PR/cranial_orthosis.html

Our son wore a DOC band for 2 months (from age 4-6mo) and had

virtually no problems with it. The very first night he had trouble

sleeping, but after that he never even seemed aware of it. The

biggest things most people have to deal with are cost and possibly

finding/traveling to a provider (if you don't live near one).

Good luck,

[Guest guest]

HI ! Welcome!!

I understand your frustrations! I looked at Saylors pics - What a CUTIE!!!!!!!

I see what you are talking about. My dd has plagio from torticollis and we saw Cranio-facial drs to get the prescription for her helmet. If you don't get anywhere with the neuro try getting an appt with a Cranio-facial team.

Also, I'm sure others have said this, try Cranial Technologies. They can do a free evaluation to see her #'s and will let you know if she needs a helmet and you can give that to your dr. You might wanna think about getting a new ped. too.

HTH!!!

Keep us updated!

Jen

Mommy to 4...and 1 more!!!!

"Luli"

www.babiesonline.com/babies/j/jens5th/