new to the group

May 14, 2006

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.

>

May 15, 2006

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.

May 16, 2006

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

May 16, 2006

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

>

May 16, 2006

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. "

__________________________________________________

May 27, 2006

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

May 28, 2006

>

> 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

May 28, 2006

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: