new to the group

[Guest guest]

Hi Jill,

Welcome! I know it's hard to want to help your child and yet feel so

scared for him. For me, personally, it helps to always be doing

something that I feel will help him: researching, reading, chatting

with this group, put therapies I've learned into practice, and just

reminding myself to relax and to enjoy my son. We played together

almost all day and it was the best way to spend Mother's Day that I

could imagine.

I just posted to another new member my take on the fish oils.

You'll probably see it if you scan the recent posts. If not, I can

email it to you. There are lots of fish oil experts in this group

who can also help.

Is your son receiving speech therapy? When my son was about 15-16

mos his SLP was VERY concerned that he wasn't making eye contact

consistently or always responding to his name. We weren't sure how

much receptive language he had. This started to improve for us when

he finally started signing (around 20-22 mos I think) and when we

got OT. I think his sensory processing issues were getting in the

way of him showing us what he new and I think when he grasped sign

language, he just grasped the symbolism involved in communication.

These things really helped us, and I think the fish oils have too.

Now his eye contact is really strong and consistent and his

receptive language seems to be very good.

Hang in there, Jill. You are here to help your little boy and you

aren't alone.

Happy Mother's Day,

Kristi

>

> Hello everyone!!! My name is Jill and I have a 3 year old son

named Lucas who was just diagnosed with mixed-expressive-receptive

speech disorder and articulation disorder. I have been reading your

chats and I am interested in the Omega stuff. I went out and bought

Omega 3 (it says it contains EFA and EPA) and I was wondering how

much I should give my son. Is this even the stuff that I read

about??? He is a big boy who weighs in at 50 pounds.

>

> I feel that my son is sooo far behind adn he will never catch

up. I feel that he does not understand some of the things that I

tell him. He avoids eye contact at times and I think it is because

he feels bad that he can't talk and can't understand language. He

usually can not answere questions? He was tested for autism but

thankfully was not diagnosed with that. He is close to the autistic

spectrum but does not qualify mainly because he has so many friends

and loves playing with them. He is a shy boy at first but then he

warms up. I think he would be even more confident if he could talk.

>

> Can any mone help me??? Does anyone have a similar situation to

mine?? I am scared of what the future may hold. I have wanted to be

amother my entire life and now I am and I feel so helpless. I am

not sure if the insurance will pay for speech therapy. We have

United Health - choice.

>

> Lost and depressed,

> Jill

>

>

>

>

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

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

Great rates starting at 1 & cent;/min.

>

>

[Guest guest]

Hi Jill,

Welcome to the best support group around..you've reached the perfect place

not only for information but for genuine SUPPORT! We here are all pretty

much going through the same feelings and emotions that you are

experiencing. Some have even had their children resolve their issues and

are still here providing us much need anecdotes.

Jill, my best advice is to have your son diagnosed by a medical

professional or a Speech Language Pathologist that can write a letter of

medical necessity for your insurance and depending on your individual

policy..it should be covered. My son has verbal and oral apraxia and that's

how we received coverage. He takes Nordic Naturals-Pro EFA formula. I

started him out on a half a teaspoon and gradually increased it to two

teaspoons. I pretty much give it to him throughout the day in his pureed

fruit. He's an extremely picky eater!

Don't let your heart be troubled...my son didn't speak a word until his was

3 1/2 years old...and just now at 4 1/2 years old is he talking 3-5 word

sentences but not concurrently. Nevertheless, he has made great progress

with all the Speech Therapy he receives. He goes to a local Pre-K

speech-delay program at our local elementary school and receives Speech 3x

a week and he receives an additional hr 2x a week privately. I can tell you

that the more frequent and consistent speech therapy he receives the more

he will improve. A positive attitude will also make that experience a more

pleasant one for him and yourself. We celebrate every new word and every

new cognition.

Take care,

Jill Valdez

<jmv_weinc@...>

Sent by: cc:

@yaho Subject:

[ ] new to the group

ogroups.com

05/14/2006 02:41 PM

Please respond to

Hello everyone!!! My name is Jill and I have a 3 year old son named Lucas

who was just diagnosed with mixed-expressive-receptive speech disorder and

articulation disorder. I have been reading your chats and I am interested

in the Omega stuff. I went out and bought Omega 3 (it says it contains EFA

and EPA) and I was wondering how much I should give my son. Is this even

the stuff that I read about??? He is a big boy who weighs in at 50 pounds.

I feel that my son is sooo far behind adn he will never catch up. I feel

that he does not understand some of the things that I tell him. He avoids

eye contact at times and I think it is because he feels bad that he can't

talk and can't understand language. He usually can not answere questions?

He was tested for autism but thankfully was not diagnosed with that. He is

close to the autistic spectrum but does not qualify mainly because he has

so many friends and loves playing with them. He is a shy boy at first but

then he warms up. I think he would be even more confident if he could

talk.

Can any mone help me??? Does anyone have a similar situation to mine?? I

am scared of what the future may hold. I have wanted to be amother my

entire life and now I am and I feel so helpless. I am not sure if the

insurance will pay for speech therapy. We have United Health - choice.

Lost and depressed,

Jill

---------------------------------

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

starting at 1 & cent;/min.

[Guest guest]

Welcome ,

We developed the condition around the same times +/- a year or two

and we are close in age too. We also have many of the same

symptoms. I haven't had surgeries but a past rheumatologist noticed

changes in neck on an xray long before I had neck pain. I guess you

have to watch out for autoimmune conditions in your 30s. hahaha!

I am responding because I too notice a huge difference just before

the cycle. Took me a little while to make the connection. It was

actually my husband who made the connection and sure enough a huge

flare comes a week prior, then eases the day of. I think this

condition is hormonal like diabetes. It definitely responds to

allergies as well. If I am having an allergic reaction or upset

stomach I am more likely to flare. I think we end up with the same

condition and symptoms, but how we arrive to RA is as varied as the

treatment plan. I feel one way is hormonal imbalance from my

personal observation and I am sure I can find articles to support

that on the internet.

Red clover herbal tea helped with the PMS for a little while. I

think if the PMS symptoms are controlled then the flares are

controlled somewhat --that is for those whose RA is hormonal. But

there are many things on the market for PMS, not just the red clover

herbal tea.

How is the swimming working for you. I originally joined an RA group

to hopefully find a group in my area involved in swimming or walking

for RA. Take care.

best wishes,

Ebony

[Guest guest]

Jumping in here to add that I agree that RA is hormonally linked. I started

having RA type symptoms and went to my doctor about them a couple of years

ago. We were going to begin testing and such, then I started feeling much

better. We attributed it to a virus or something...3 weeks later I

(surprisingly) found out I was pregnant with my 3rd child. I had no

symptoms of RA until she was about born, and then slowly all of them started

back, and have continued to build and multiply since her birth about 10

months ago. I have not had a cycle since she was born (gotta love

breastfeeding), so I can't speak to the cycles, but I do know I felt awesome

while I was pregnant!

I am new here too, and looking forward to hearing about all of your

struggles and especially success stories. I am only 36 (almost 37) with 3

kids 6 and under...I have lots of LIVING to do and want to do it with

enjoyment.

Hugs,

On 5/16/06, Ebony <stillbreathing29@...> wrote:

>

> Welcome ,

>

> We developed the condition around the same times +/- a year or two

> and we are close in age too. We also have many of the same

> symptoms. I haven't had surgeries but a past rheumatologist noticed

> changes in neck on an xray long before I had neck pain. I guess you

> have to watch out for autoimmune conditions in your 30s. hahaha!

>

> I am responding because I too notice a huge difference just before

> the cycle. Took me a little while to make the connection. It was

> actually my husband who made the connection and sure enough a huge

> flare comes a week prior, then eases the day of. I think this

> condition is hormonal like diabetes. It definitely responds to

> allergies as well. If I am having an allergic reaction or upset

> stomach I am more likely to flare. I think we end up with the same

> condition and symptoms, but how we arrive to RA is as varied as the

> treatment plan. I feel one way is hormonal imbalance from my

> personal observation and I am sure I can find articles to support

> that on the internet.

>

> Red clover herbal tea helped with the PMS for a little while. I

> think if the PMS symptoms are controlled then the flares are

> controlled somewhat --that is for those whose RA is hormonal. But

> there are many things on the market for PMS, not just the red clover

> herbal tea.

>

> How is the swimming working for you. I originally joined an RA group

> to hopefully find a group in my area involved in swimming or walking

> for RA. Take care.

>

> best wishes,

> Ebony

>

>

>

>

>

>

>

>

>

[Guest guest]

Welcome :

This is a great group! I have learned so much, and

the people here are very sharing and supportive.

I can relate to the fear of not knowing what will

happen as far as the RA goes, what will the disease do

to me, can I still do the things I am enjoying now in

a few years? My grandmother had RA, and was very

crippled and in a wheelchair her last years, but I am

confident with the new meds out now, I won't end up

like that. But it is still a worry in the back of my

mind anyway.

I also have RA & FM, and also OA and Raynaud's. You

are on similar meds to me - I am on Enbrel,

Methotrexate, Mobic, and Ultram for pain of both the

RA and FM; I also take Effexor XR, Skelaxin and Lyrica

for FM, and Ambien CR and Zanaflex at bedtime. I also

have high blood pressure and asthma. That's a lot of

meds! However, without them I am scared to think of

how it would be.

Anyway, here you will find a lot of new friends, I am

sure - take care -

Kathe in CA

Kathe

" To ride a horse is to borrow freedom. "

__________________________________________________

[Guest guest]

Welcome Noelle,

It's been almost 7 years since my son's diagnosis and he is doing well. I

began giving him omega3 (www.coromega.com) at 2.5 yo b/c he had been seen by

a DAN nutritionist and he had severe eczema on his face and further testing

(blood, stools) showed an internal yeast infection.

A clinical/educational speech pathologist diagnosed him as verbal apraxia. I

have tried to go back to the point when I was given the diagnosis and can

remember the " mourning period " I went through b/c I never thought he would

get better.

It is a long process but if every 3 months you are seeing progress, things

are working. You know your child best, and a mother's instincts seems to be

the path to take. Early intervention is key and a lot of it too! My son

not only went through the early intervention program and preschool disabled

program, but privately received support in speech, ot, vision, sound

therapies.

I would suggest:

an OT evaluation (both medically and educationally) www.sinetwork.org

Vision Test - www.covd.org lists providers

Audiologist - tests for hearing and listening (hypersensitivities)

Check out www.thedaviscenter.com for more information

DAN nutritionist - tests for possible internal toxicity Not all children on

this list have needed a DAN protocol, but those that have seeked the

biochemical procedures, like myself, have seen my child come out of the

" fog " . http://www.talkautism.org/video/df/index.asp?id=3#

Maureen McDonnell is a registered nurse, nutritionist who helped my son

immensely. She treated him for leaky gut.

My son not only had verbal apraxia but sensory integration dysfunction,

auditory processing, hypotonia, motor planning disorder, dysgraphia, and

written expression. These other symptoms appeared over the years. He has

been in a parochial school since kindergarten (I started him at age 6) and

does very well academically and will be attending 4th grade in the Fall. No

layperson would be able to see any delays.

You know your child best. Go with your instincts and never stop asking

questions to the professionals, parents, caregivers, teachers, etc. The

professionals are experts in their fields and may not know what the other

one is doing. You are the nucleus and can bring the group of professionals

together so that the individual plan your child needs is a success. I have

spent many nights on the computer educating myself, and printing out

information to give to my speech therapist, occupational therapist, vision

therapist and/or audiologist. Those professionals who look down on you for

feeding them information, may not be the right person for your child's team.

Good luck on your journey and it is very normal to go through a " mourning

period " .

All the best,

Joanne Mulholland

[Guest guest]

>

> My 4 year old son was recently diagnosed with verbal apraxia. So of

> course I'm trying to find out as much as I possibily can about this

> disorder. I actually just read the book Late Talker, and is how I

> found out about the Cherab Foundation. Right now I'm just

overwhelmed

> as I'm sure all of you were when your children were first diagnosed.

> Any advice or knowledge or anything would be greatly appreciated.

>

> By the way my name is Noelle and my son's name is . I look

> forward to hearing from you.

>

> Thanks,

>

> Noelle

>

dear Noelle,

We are somewhat in the same stage of learning to deal with and accept

our " new life " of having a chid with apraxia.Although I read The Late

talker a little more than year ago when our daughter Shea was around

22months old,we didn't see a developmental pediatrician until afew

months later. Unfortunately she only suggested apraxia and told us to

get further speech evals. and recommended therapy.I could cry and I

feel sick every time I look back to ayear ago because our insurance

denied private therapy(saying the delay was developmental),early

intervention said just modeling good speech and encouraging " language "

was all she needed,and when we had an independent speech eval. they

said if she was truly apraxic she wouldn't be able to do " such and

such " . SO,we hung onto false hope that she didn't have apraxia,even

though she had every single sign listed in the Late Tlaker . Our

daughter also has other motor planning problems, mild hypotonia, and

perceptual problems. WE know this only because I finally got an

appointment with an outstanding neurodevelopmental pediatrician who

knows about apraxia. WE had our daughter tested by three differnt

developmental pediatrcians (one with a neuro background and they could

not diagnose apraxia!) sSO now you know and that lets you take the

correct action. The Omega 3,6,9 fish oils are an important start. This

group informed me of those which I did start ayear ago when

we " suspected apraxia " and maybe that's why Shea could make some words

and sounds that the independent therapists couldn't confirm the dx.. We

use the Nordic naturals from the Cherub Shop Inservice. Our local

health store also carries them. Shea now takes 2 efa's with 1 epa in

the morning, and 1 efa with 1 epa at night.We worked up to this in the

last year with a boost of the extra 2 efa's just in the last 3 weeks

recommended by Dr. Agin herself. WE saw an improvement in her word

vocbulary and she's stringing three words together now on a more

consistent basis. MOST importantly, with this eval. from the qualified

Dr. we just got our preschool handicap program to offer Shea the 4-5

individual therapy sessions a week and they are sending their therapist

to PROMPT training this summer.Finally Shea will be getting speech

therapy for the first time ever treating her apraxiThe school therapist

in March said Shea's speech errors were typical andthe language would

come.She recommended group languge therapy only 1x PER WEEK!!!! We

insisted she not work with our daughter and the district pulled another

therapist from another school to work with Shea.{this all just happened

last thursday,life seems like a whirl wind) Our district asked for the

Dr.'s qualifications and we handed over a three page list of the dr's

qualifications in this area,so they couldn't argue and deny our

daughter. Our next step, or battle, is the ignorant insurance company.

Everything you do needs to be done in steps, and set in priority. I'm

the type that wants to work really hard and get everything done as soon

as possible. I've learned helping our children can't be done that way.

Take the info. from this group and other sources and prioritise. GET

SLEEP.(I've not been following my own advice and have some serious

health issues I now have to deal with on top of this} We also had a

mineral analysis done on shea's hair which found her deficient in some

areas so we are supplimenting her with the recommended vitamins and

minerals. This also has just started this week.She hates the vitamins

and cries NO everytime I try to give them to her.(she is 36 months old

by the way)I tried the gluten free diet(to help possble leaky gut and

to enhance her overall health} but it was so difficult because we have

three other children and she wanted what they were eating. I am still

numb and sad and wishing this wasn't how our life and our little

daughters life has to be.I'm hoping I can find happiness in our " new

normal " ,I wish you the best. GOOD LUCK. Cheryl,capetalkers mom

[Guest guest]

To Noelle

Welcome to the Group, I am sure you will find great support within the Group.

My daughter Andrianna is two years old and she has Dyspraxia, Hypotonia,

Strabismus and Global Developmental Delays.

She has physiotherapy 2xweeks, one group therapy and one Individual Therapy.

Andrianna was diagnosed recently with Hypotonia, Dyspraxia and Strabismus,

Global Developmental Delays in November 2004.

I do hope you have a lovely day and take care

Chrissy

capetalker <capetalker@...> wrote:

>

> My 4 year old son was recently diagnosed with verbal apraxia. So of

> course I'm trying to find out as much as I possibily can about this

> disorder. I actually just read the book Late Talker, and is how I

> found out about the Cherab Foundation. Right now I'm just

overwhelmed

> as I'm sure all of you were when your children were first diagnosed.

> Any advice or knowledge or anything would be greatly appreciated.

>

> By the way my name is Noelle and my son's name is . I look

> forward to hearing from you.

>

> Thanks,

>

> Noelle

>

dear Noelle,

We are somewhat in the same stage of learning to deal with and accept

our " new life " of having a chid with apraxia.Although I read The Late

talker a little more than year ago when our daughter Shea was around

22months old,we didn't see a developmental pediatrician until afew

months later. Unfortunately she only suggested apraxia and told us to

get further speech evals. and recommended therapy.I could cry and I

feel sick every time I look back to ayear ago because our insurance

denied private therapy(saying the delay was developmental),early

intervention said just modeling good speech and encouraging " language "

was all she needed,and when we had an independent speech eval. they

said if she was truly apraxic she wouldn't be able to do " such and

such " . SO,we hung onto false hope that she didn't have apraxia,even

though she had every single sign listed in the Late Tlaker . Our

daughter also has other motor planning problems, mild hypotonia, and

perceptual problems. WE know this only because I finally got an

appointment with an outstanding neurodevelopmental pediatrician who

knows about apraxia. WE had our daughter tested by three differnt

developmental pediatrcians (one with a neuro background and they could

not diagnose apraxia!) sSO now you know and that lets you take the

correct action. The Omega 3,6,9 fish oils are an important start. This

group informed me of those which I did start ayear ago when

we " suspected apraxia " and maybe that's why Shea could make some words

and sounds that the independent therapists couldn't confirm the dx.. We

use the Nordic naturals from the Cherub Shop Inservice. Our local

health store also carries them. Shea now takes 2 efa's with 1 epa in

the morning, and 1 efa with 1 epa at night.We worked up to this in the

last year with a boost of the extra 2 efa's just in the last 3 weeks

recommended by Dr. Agin herself. WE saw an improvement in her word

vocbulary and she's stringing three words together now on a more

consistent basis. MOST importantly, with this eval. from the qualified

Dr. we just got our preschool handicap program to offer Shea the 4-5

individual therapy sessions a week and they are sending their therapist

to PROMPT training this summer.Finally Shea will be getting speech

therapy for the first time ever treating her apraxiThe school therapist

in March said Shea's speech errors were typical andthe language would

come.She recommended group languge therapy only 1x PER WEEK!!!! We

insisted she not work with our daughter and the district pulled another

therapist from another school to work with Shea.{this all just happened

last thursday,life seems like a whirl wind) Our district asked for the

Dr.'s qualifications and we handed over a three page list of the dr's

qualifications in this area,so they couldn't argue and deny our

daughter. Our next step, or battle, is the ignorant insurance company.

Everything you do needs to be done in steps, and set in priority. I'm

the type that wants to work really hard and get everything done as soon

as possible. I've learned helping our children can't be done that way.

Take the info. from this group and other sources and prioritise. GET

SLEEP.(I've not been following my own advice and have some serious

health issues I now have to deal with on top of this} We also had a

mineral analysis done on shea's hair which found her deficient in some

areas so we are supplimenting her with the recommended vitamins and

minerals. This also has just started this week.She hates the vitamins

and cries NO everytime I try to give them to her.(she is 36 months old

by the way)I tried the gluten free diet(to help possble leaky gut and

to enhance her overall health} but it was so difficult because we have

three other children and she wanted what they were eating. I am still

numb and sad and wishing this wasn't how our life and our little

daughters life has to be.I'm hoping I can find happiness in our " new

normal " ,I wish you the best. GOOD LUCK. Cheryl,capetalkers mom

[Guest guest]

In addition to seeing your pediatrician, has he seen a developmental

pediatrician? It sounds like he needs an OT evaluation for feeding issues at

the very least, as well as a speech evaluation. All these things take time

to set up - so I suggest you start making these appts. When is your next

pediatric visit? You will need referrals to get these evals done through

your insurance. At 33 months you are almost too late for an EI eval, but

you may want to contact your state early intervention center since at age 3

it is the school district that provides (hopefully) some services. You

should also contact your school district and find out who to talk to since

you have a nearly 3 year old who may need speech and OT - there may be an

appropriate language-based preschool your child will qualify for. In the

beginning it seems like an endless line-up of evaluations. Very time

consuming and exhausting. Read The Late Talker by Marilyn Agin and

Geng - if you haven't already done so. It is a wealth of information, and

the " how to " book for families of apraxic children. -

[ ] New to the Group

Hi,

My name is Vidya. My 33 month old son Yash has speech delay, eating

problems and hypotonia. He has not yet been diagnosed as having

verbal/oral apraxia, but we are planning to bring this up at his next

pediatric visit. He babbles a lot, but only few meaningful words.

Feeding him is stressful for both Yash and me. He cannot

chew food and will never voluntarily put any food into his mouth. Any

words of advise would be greatly appreciated.

Thanks,

Vidya.

[Guest guest]

Vidya,

You will need to get him evaluated by a specialist..perhaps a developmental

pediatrician. My son was basically non-verbal at 3 y.o.; never put anything

in his mouth, drooled excessively and had very poor eating habits. He was

diagnosed with Severe Verbal/Oral Apraxia, Hypotonia and Sensory

Integration Disorder. She asked he be put on Pro-EFA (Essential Fatty Acids

and a Multi-Vitamin). She also recommended Speech at least 2x a week

outside of the school district pre-school program where he gets Speech 3x a

week. For his Hypotonia, she prescribed OT at least 2x a week. All of

these things in combination have helped him tremendously. He still has a

long way to go...but he's a completely different child. He still has eating

issues which we have to struggle with daily.

" sm_veda "

<sm_veda@...>

Sent by: cc:

@yaho Subject:

[ ] New to the Group

ogroups.com

05/30/2006 01:07 PM

Please respond to

Hi,

My name is Vidya. My 33 month old son Yash has speech delay, eating

problems and hypotonia. He has not yet been diagnosed as having

verbal/oral apraxia, but we are planning to bring this up at his next

pediatric visit. He babbles a lot, but only few meaningful words.

Feeding him is stressful for both Yash and me. He cannot

chew food and will never voluntarily put any food into his mouth. Any

words of advise would be greatly appreciated.

Thanks,

Vidya.

[Guest guest]

Myra,

I'm interested in the fact that your son's developmental

pediatrician instructed you to give your child ProEFA. I keep

hearing about how doctors pooh-pooh the EFA thing and haven't been

very excited about bringing it up to my son's pediatrician. Just

curious, what did she tell you about it? How much did she suggest

and what does she think about giving very high doses? Thanks!

Kristi

>

> Vidya,

> You will need to get him evaluated by a specialist..perhaps a

developmental

> pediatrician. My son was basically non-verbal at 3 y.o.; never put

anything

> in his mouth, drooled excessively and had very poor eating habits.

He was

> diagnosed with Severe Verbal/Oral Apraxia, Hypotonia and Sensory

> Integration Disorder. She asked he be put on Pro-EFA (Essential

Fatty Acids

> and a Multi-Vitamin). She also recommended Speech at least 2x a

week

> outside of the school district pre-school program where he gets

Speech 3x a

> week. For his Hypotonia, she prescribed OT at least 2x a week.

All of

> these things in combination have helped him tremendously. He still

has a

> long way to go...but he's a completely different child. He still

has eating

> issues which we have to struggle with daily.

[Guest guest]

You will find that those doctors who have actually read the literature, will

in fact recommend it. Many other physicians will be open to it. But many

just don't know about it. Its not something you learn about in med

school...at least not yet. Its not mainstream. You may find you are the

first family with an apraxic in the pediatrician's office. Its not something

they see every day.

There is in fact some good science to the use of omega supplements for

several developmental disorders - particularly dyslexia/dyspraxia/ ADHD in

addition to the anecdotal reports on apraxia. J. Stordy PhD, and A.

MD are 2 researchers that have published a great deal on the

topic.

The 2nd developmental pediatrician we had my son evaluated by - who

confirmed the global apraxia dx suspected by our SLP, and has been

instrumental in our increasing services through EI, overturning denials by

insurance through letters of medical necessity - recommends omega

supplements to all of his speech delayed kids. So when I brought it up to

him, his response was, oh yeah - I was going to tell you about that. He's

not sure on the dosing, nor can he ( or anyone else at this time) say why it

works. But his experience is that it works for some kids. He was not

specifically aware of the dramatic results for some apraxic kids. But as he

put it...if it works - not too many families care WHY its working, as long

as its working.

Personally, I'm thrilled its working - but REALLY want to understand why. An

understanding of the mechanism may lead to a better formula or ideal dosing.

-

[ ] Re: New to the Group

Myra,

I'm interested in the fact that your son's developmental

pediatrician instructed you to give your child ProEFA. I keep

hearing about how doctors pooh-pooh the EFA thing and haven't been

very excited about bringing it up to my son's pediatrician. Just

curious, what did she tell you about it? How much did she suggest

and what does she think about giving very high doses? Thanks!

Kristi

>

> Vidya,

> You will need to get him evaluated by a specialist..perhaps a

developmental

> pediatrician. My son was basically non-verbal at 3 y.o.; never put

anything

> in his mouth, drooled excessively and had very poor eating habits.

He was

> diagnosed with Severe Verbal/Oral Apraxia, Hypotonia and Sensory

> Integration Disorder. She asked he be put on Pro-EFA (Essential

Fatty Acids

> and a Multi-Vitamin). She also recommended Speech at least 2x a

week

> outside of the school district pre-school program where he gets

Speech 3x a

> week. For his Hypotonia, she prescribed OT at least 2x a week.

All of

> these things in combination have helped him tremendously. He still

has a

> long way to go...but he's a completely different child. He still

has eating

> issues which we have to struggle with daily.

[Guest guest]

> >

> > Vidya,

> > You will need to get him evaluated by a specialist..perhaps a

> developmental

> > pediatrician. My son was basically non-verbal at 3 y.o.; never

put

> anything

> > in his mouth, drooled excessively and had very poor eating

habits.

> He was

> > diagnosed with Severe Verbal/Oral Apraxia, Hypotonia and Sensory

> > Integration Disorder. She asked he be put on Pro-EFA (Essential

> Fatty Acids

> > and a Multi-Vitamin). She also recommended Speech at least 2x a

> week

> > outside of the school district pre-school program where he gets

> Speech 3x a

> > week. For his Hypotonia, she prescribed OT at least 2x a week.

> All of

> > these things in combination have helped him tremendously. He

still

> has a

> > long way to go...but he's a completely different child. He still

> has eating

> > issues which we have to struggle with daily.

>

>

>

>

>

>

>

[Guest guest]

My son is 6 and still doesn't chew food!! I have to self feed him pureed food

some still baby food. His weight is 43-44lbs for the last year. He pretty

much has the same staple diet daily. He will only self feed applesauce and

vanilla pudding. Eating therapy is O.K., he just started sucking from a

straw. He just now puts 2-3 words together. His apraxia is so severe of

course so 75% intelligible... He is the greatest happpiest kid w/no behavior

problems other than growling and sometimes grinding his teeth. He also has a

habit of picking his lip which we keep lots of chap stick nearby. School is

fun for him, he loves it, next year he'll be in K (inclusion class) he's in

pre-K incusion now. He still is in diapers.. We are trying this summer,

again... I have him on 4 EFA and 2 EPA which I give all at once in the AM

added in his 2 yogurts w/his 2 oatmeal jars... He also takes a drop & dissolve

multivitamin, and a dissolvable B12,B6 Folic pill in his juice.

Any other ideas for the feeding issues, greatly appreciated. (Every day at

school he takes 1 applesauce and 1 pudding w/a juice box and water bottle) Of

course tried to alter no luck....

myra.bauza@... wrote: Vidya,

You will need to get him evaluated by a specialist..perhaps a developmental

pediatrician. My son was basically non-verbal at 3 y.o.; never put anything

in his mouth, drooled excessively and had very poor eating habits. He was

diagnosed with Severe Verbal/Oral Apraxia, Hypotonia and Sensory

Integration Disorder. She asked he be put on Pro-EFA (Essential Fatty Acids

and a Multi-Vitamin). She also recommended Speech at least 2x a week

outside of the school district pre-school program where he gets Speech 3x a

week. For his Hypotonia, she prescribed OT at least 2x a week. All of

these things in combination have helped him tremendously. He still has a

long way to go...but he's a completely different child. He still has eating

issues which we have to struggle with daily.

" sm_veda "

<sm_veda@...>

Sent by: cc:

@yaho Subject:

[ ] New to the Group

ogroups.com

05/30/2006 01:07 PM

Please respond to

Hi,

My name is Vidya. My 33 month old son Yash has speech delay, eating

problems and hypotonia. He has not yet been diagnosed as having

verbal/oral apraxia, but we are planning to bring this up at his next

pediatric visit. He babbles a lot, but only few meaningful words.

Feeding him is stressful for both Yash and me. He cannot

chew food and will never voluntarily put any food into his mouth. Any

words of advise would be greatly appreciated.

Thanks,

Vidya.

[Guest guest]

>

> Myra,

>

> I'm interested in the fact that your son's developmental

> pediatrician instructed you to give your child ProEFA. I keep

> hearing about how doctors pooh-pooh the EFA thing and haven't been

> very excited about bringing it up to my son's pediatrician. Just

> curious, what did she tell you about it? How much did she suggest

> and what does she think about giving very high doses? Thanks!

>

> Kristi

My ped didn't recommend EFA supplements, but was certainly supportive

of them when I suggested it. Of course, it helps that she has a son

who is autistic and gives him Coreomega. She didn't know about

ProEFA, and is sort of using me as her guinnea pig. She says if

will take it, maybe she will switch to get the Omega 6s. It just

came, so here we go...

Sue

[Guest guest]

,

I recommend a book called " Just Take a Bite. " It's written by an OT

and a PhD and has a lot of great tips for working with kids who have

food aversions. Check it out on Amazon for reviews and a full

description.

My 25 mo old still eats a good bit of baby food but lately we have

made huge progress with eating table food and chewing. Meal times

can take a while. I always have board books for him to look at with

me because it takes a while to chew. I sing songs and entertain him

so he's willing to take the time needed to eat.

He was self feeding apple/fruit sauces and baby cereal but won't do

it anymore. Not sure what to do about that. You are probably

already doing this, but one thing I've found that helps is to

stimulate the inside of his moust with a nuk brush, vibrating

toothbrush or z-vibe and massaging his gums before meals. I do the

brushing protocol 2-3 times a day and body massage every night to

further desensitize him (some tactile defensiveness) and to give him

input (some sensory seeking).

I also encourage him to chew on a chewy tube to strengthen the

muscles in his mouth. His OT wants him to chew on chewy candy like

twizzlers but he won't, but maybe yours would. You could try laughy

taffy too, since your son is older. (I'm kind of worried about

choking. If you are too, you could try securing it in some organza

and letting him chew on it through the material).

You didn't say if your child is averse to certain textures or just

has muscle weakness. Maybe some of each? For aversions, you can

try the methods described above to desensitize, messy play with

sand, shaving cream, finger paints, play doh, etc and you can

encourage him to touch and play with food (maybe in the back yard or

bath tub, sometimes the kitchen table is too threatening. In order

to strengthen the muscles in his mouth, talk to your OT about trying

some of the methods my OT suggests.

Can your child spit out food he doesn't like? Mine couldn't until

recently, but now that he's learned how, he is more opening to

putting new things in there, since he knows he can always get them

back out!

One last tip, I worry about my child getting enough fiber especially

when consuming sugary things like fruit sauce, flavored yogurt and

juice. Fiber, fat and protein help slow the absorbtion of sugar

into the system. I add wheat germ or oat bran to his yogurt, baby

food cereal and sometimes to fruit sauce for added nutrition. Since

your son is sipping through a straw, you could make him smoothies,

in which you could also add wheat germ, nut butters (just a

tablespoon) and powdered milk (added protein and calcium). You can

even add purreed vegetable baby food if you're careful about the

color (sweet potatoes and carrots for red/orange ones, or make a

green one with avocado and maybe even a little strained green beans

or peas. If you mix this with pineapple juice and kiwi it will be a

pretty color and sweet enough to hide the veggies.)

Kristi

Vidya,

> You will need to get him evaluated by a specialist..perhaps a

developmental

> pediatrician. My son was basically non-verbal at 3 y.o.; never

put anything

> in his mouth, drooled excessively and had very poor eating

habits. He was

> diagnosed with Severe Verbal/Oral Apraxia, Hypotonia and Sensory

> Integration Disorder. She asked he be put on Pro-EFA (Essential

Fatty Acids

> and a Multi-Vitamin). She also recommended Speech at least 2x a

week

> outside of the school district pre-school program where he gets

Speech 3x a

> week. For his Hypotonia, she prescribed OT at least 2x a week.

All of

> these things in combination have helped him tremendously. He

still has a

> long way to go...but he's a completely different child. He still

has eating

> issues which we have to struggle with daily.

[Guest guest]

She explained the importance of the role of Essential Fatty Acids to a

child's brain development. It facilitates communication within the brain

and motor development. She started my son on a 1/4 of a teaspoon for a week

and asked to gradually increase by a another 1/4 until I reached a full

teaspoon barring any side effects. He's currently on this dosage. The

initial dosage was recommended when he was 3 y.o; at 3.6 y.o., she saw him

and asked about the EFA's and my comments regarding it. I told her that he

immediately " cleared up " . Before EFA's, I felt he was in a haze..almost in

a cloud. He immediately was more alert and wouldn't zone out while

playing...more receptive to speech therapy as well. She was happy and said

to continue. She did not ask me to increase and so I haven't. He's improved

tremendously in a year's time...with the combination of EFA's, Carnaware

and the Multi-Vitamin...and with Speech 4x a week...

" sloringcrane "

<sloringcrane@...>

Sent by: cc:

@yaho Subject:

[ ] Re: New to the Group

ogroups.com

05/31/2006 07:57 AM

Please respond to

>

> Myra,

>

> I'm interested in the fact that your son's developmental

> pediatrician instructed you to give your child ProEFA. I keep

> hearing about how doctors pooh-pooh the EFA thing and haven't been

> very excited about bringing it up to my son's pediatrician. Just

> curious, what did she tell you about it? How much did she suggest

> and what does she think about giving very high doses? Thanks!

>

> Kristi

My ped didn't recommend EFA supplements, but was certainly supportive

of them when I suggested it. Of course, it helps that she has a son

who is autistic and gives him Coreomega. She didn't know about

ProEFA, and is sort of using me as her guinnea pig. She says if

will take it, maybe she will switch to get the Omega 6s. It just

came, so here we go...

Sue

[Guest guest]

Welcome, Carolyn! Sorry about your diagnoses.

Dr. Wallace's " The Lupus Book: A Guide for Patients and Their

Families (2005) " is an excellent resource:

http://www.amazon.com/gp/product/0195181816/ref=nosim/002-7084768-1023244?camp=2\

025 & dev-t=D26XECQVNV6NDQ & link%5Fcode=xm2 & n=283155

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] New to the Group

> Hello Everyone

> Thanks for welcoming me to the Group. I've been diagnosed

> with OA, Lupus, Raynauds and Fibromyalgia. Does anyone

> have suggestions on good books I could buy on these illnesses?

> Have a good day.

> Thanks,

> Carolyn

>

[Guest guest]

--- In , " " <Matsumura_Clan@...>

wrote:

>

> Welcome, Carolyn! Sorry about your diagnoses.

>

> Dr. Wallace's " The Lupus Book: A Guide for Patients and Their

> Families (2005) " is an excellent resource:

>

>

Thanks ,

Carolyn

[Guest guest]

hi vidya- weve been going through this with josh for years- he has been in a

feeding group and can put some foods in his mouth before he gags- the feeding

group has helped- he is trying cottage cheese and applesauce with cinnamon

now- charlotte henry

[Guest guest]

--- In , " erinmbrock " <erinmbrock@...>

wrote:

>

> I am 23 years old and female. I was just diagonsed with a

combination

> of RA, Lupus, and Sjogrens Syndrome. I am scared and I feel like

no

> one understands what I am dealing with. I just want to know what I

am

> going to deal with. I was prescribed Plaquenil and I wondering how

> other people have reacted to it? PLEASE HELP!

>

Hi and welcome

You will find this a very friendly place and people will share with

you their experiences with different meds. We all have the same

diagnoses give or take..I dont have Sjogrens or Lupis, but do have

Ra,fibromyalgia and Degenerative disc disease with three damaged

Lumbar discs that can't be fixed.

This is a good place to ask questions because usually SOMEONE either

has been on the mediction you are asking about....or knows someone

who has. We all share ideas and methods for coping. It is not easy at

first. All of us were shocked at first with our diagnosis....then you

start reading. It is really important to read up on what you are

dealing with and to find Dr's that support you....and to be able to

change DR's if they don't feel right to you or for you! I took

Plaquinel.......and couldn't cope with the side effects...they put me

in the hospital over Christmas. Methotrexate wasn't doing the job

alone and it also has side effects...but I'm going back on it until

my Rheumatologist appt later this month....hoping he will let me stay

on it rather than move up to the new biologicals....but in the end I

will do what I have to to keep on going and keep the damage to a

minimum. Good luck....and Keep asking questions. I keep a log by the

way so when I go to the dr I can tell him how many times I was sick

or how many days I had diarrhea etc....it helps him form a better

picture...and it helps you too...to vent as you go along!! Welcome!!

Jenna

[Guest guest]

Hi ,

It's normal to have the feelings you do. MANY people have diagnoses

such as yours and lead good lives. (Often the healthier folks do not

spend much time on boards like these.)

My best to you.

Sierra

>

> I am 23 years old and female. I was just diagonsed with a

combination

> of RA, Lupus, and Sjogrens Syndrome. I am scared and I feel like no

> one understands what I am dealing with. I just want to know what I

am

> going to deal with. I was prescribed Plaquenil and I wondering how

> other people have reacted to it? PLEASE HELP!

>

[Guest guest]

Hey ,

What ur feeling is the hardest thing in this disease. I spent 6

months trying to convince people that im really sick and its not my

imagination, they only belived me when one day i couldnt get out of bed.

The first important thing u must do is to keep thinking positive,

cuz this diseases all differ from person to another. I am on Arava an

Plaquenil for 2 weeks now and im feeling super good (lol) i suffer from

side effects but i dont know if its from which drug or from depression

or im exhausted. All i can say that u must try it by ur self to find out

(Surprise).

Try to not think a lot on what will happen and also try to read as much

as u can.

Marwa

>

> I am 23 years old and female. I was just diagonsed with a combination

> of RA, Lupus, and Sjogrens Syndrome. I am scared and I feel like no

> one understands what I am dealing with. I just want to know what I am

> going to deal with. I was prescribed Plaquenil and I wondering how

> other people have reacted to it? PLEASE HELP!

>

[Guest guest]

> >

> > I am 23 years old and female. I was just diagonsed with a

> combination

> > of RA, Lupus, and Sjogrens Syndrome. I am scared and I feel

like

> no

> > one understands what I am dealing with. I just want to know

what I

> am

> > going to deal with. I was prescribed Plaquenil and I wondering

how

> > other people have reacted to it? PLEASE HELP!

> >

> Hi and welcome

> You will find this a very friendly place and people will share

with

> you their experiences with different meds. We all have the same

> diagnoses give or take..I dont have Sjogrens or Lupis, but do have

> Ra,fibromyalgia and Degenerative disc disease with three damaged

> Lumbar discs that can't be fixed.

> This is a good place to ask questions because usually SOMEONE

either

> has been on the mediction you are asking about....or knows someone

> who has. We all share ideas and methods for coping. It is not easy

at

> first. All of us were shocked at first with our diagnosis....then

you

> start reading. It is really important to read up on what you are

> dealing with and to find Dr's that support you....and to be able

to

> change DR's if they don't feel right to you or for you! I took

> Plaquinel.......and couldn't cope with the side effects...they put

me

> in the hospital over Christmas. Methotrexate wasn't doing the job

> alone and it also has side effects...but I'm going back on it

until

> my Rheumatologist appt later this month....hoping he will let me

stay

> on it rather than move up to the new biologicals....but in the

end I

> will do what I have to to keep on going and keep the damage to a

> minimum. Good luck....and Keep asking questions. I keep a log by

the

> way so when I go to the dr I can tell him how many times I was

sick

> or how many days I had diarrhea etc....it helps him form a

better

> picture...and it helps you too...to vent as you go along!!

Welcome!!

> Jenna

>

Hi ,

Welcome to our group, you will find information, caring and

understanding you need right here. We all are in the same boat,some

alittle longer than others You will find that we laugh, sometimes

cry, rejoyce with each good news we have, it's an extension of my

family, you will come to feel that as well. I'm am sorry for what

you are going through, i do not take the medicine that you are on.

But there are some in this group that do,

you will hear from someone who does and will be able to give you the

information you need. let us know how you are doing, brenda

[Guest guest]

Hello,

I was 39 when I was diagnosed with RA. I know how scared you feel

right now. It is the unknown that frightens us. I am sorry to hear

that you have other things going on also--it's bad enough just

dealing with one issue.

I was on plaquenil for a short time but it didn't seem to help me.

The things that have helped me are Humira and Methotrexate. However,

doctors usually start you out on something small before they move

on. It is a process--you try something, see how it works, then move

on to something else if you get no relief.

How is your pain level with the plaquenil? I hope you keep all your

doctor visits. They will eventually be able to help you. Try not to

look too far down the road--one day at a time as they say. I have

been dealing with this for 12 years now! And I've had ups and downs

(a lot of downs) BUT you are young. Try to fit in exercise if you

can and relaxation tapes help too! When you feel panicky, try to

relax your muscles, breathe, etc.

Don't give up--try to keep positive--make goals for yourself. These

are things I have tried lately and they seem to help. Focus on

living, not your disease. Find people who will listen to you--not

try to give advice--just to listen to you--mothers are usually good

at that!

Well, take care--I'll be praying for you,

Kandy in Iowa

--- In , " erinmbrock " <erinmbrock@...>

wrote:

>

> I am 23 years old and female. I was just diagonsed with a

combination

> of RA, Lupus, and Sjogrens Syndrome. I am scared and I feel like

no

> one understands what I am dealing with. I just want to know what I

am

> going to deal with. I was prescribed Plaquenil and I wondering how

> other people have reacted to it? PLEASE HELP!

>