Just diagnosed...Where do I start???

[Guest guest]

Hi,

My name is , my 21-month old daughter was just diagnosed by aSLP on

Dec. 27th with verbal apraxia. WHERE DO I START? I've read a lot on the web,

but now I just have more questions?

What books does anyone recommend?

Should additional medical tests be done....Neuro., blood work,

nutritional ????

What is all this talk about supplements...EFA's, EPA's....??? Should a

doctor being supervising this?

What happens with this Early Intervention Program? Should I just go to

a private SLP?

Very Confused -Please Help!

Thank You,

[Guest guest]

Hi & Welcome!!

Wow, I remember feeling like you do!! My son now 5 1/2 was dx at 31

months of age with oral & verbal apraxia. He was expressively at the level

of a 6-9 month old! We did not start speech therapy until 32 months of age.

He got 2 months of the EI program then we continued private therapy 2

times a week for 30 minutes up until this past summer. His slp recently

told me that when she started his therapy she had little hope for him, but

boy did he surprise her!! At age 3 1/2 we started on one Pro EFA

capsule a day. In 3 1/2 weeks we began to notice an increase in babbling &

him trying to make new sounds. From there he began to make word

approximations, to putting two word approximations together. Now weeks

before he had just a couple of sounds, ma for just about everything, ii for

hi & ii ii for night night. No he didn't just start talking in sentences

but he began to go through a stage progression that should have taken place

2 years sooner. Anyways, fast forward to present day & he is talking in 5 -

6 word sentences. His articulation is still a problem but for the most part

strangers can understand him about 65 - 75% of the time. I talked to his

Ped about the essential fatty acids & he said go ahead I took cod liver oil

as a kid (and did he make a face from remembering the taste!!) He is a

doctor that is in his 30's that was raised in the ines. Seems that

many there still take it. I order Pro EFA off the Shopinservice.com site.

They usually have a special where you can get 3 bottles for a special price.

We pierce the end of the capsule & squirt it in his mouth giving a chaser

of something sour after. Hang in there, get the book The Late Talker & read

everything you can about apraxia. It gets better as time goes on with the

right therapy & EFA's most don't even notice is delayed.

Tammy I. in FL

From: bhazen1008@...

Reply-

Subject: [ ] Just diagnosed...Where do I start???

Date: Thu, 1 Jan 2004 19:38:19 EST

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[Guest guest]

Hi ,

Don't feel bad -no matter how little or much information we get when

our child is diagnosed with apraxia, and no matter what our

background prior - we are all overwhelmed and confused. This group

is a mix of new members such as yourself who have a diagnosis -some

who do not have any diagnosis -but have a " late talker " child -and

those like me who have been down this road for years. Those of us

with older children are now exploring school issues and/or constipation -

while new parents talk about preschool and potty training -and we

all help each other as parents/professionals the best we can by

sharing our own experiences and thoughts.

Apraxia is a frustrating condition when you first look at it, and

one that is only first being looked at research wise -so much we are

learning. Apraxia we are reporting here on this grouplist however

is also one that may, just like other communication impairments,

have positive benefits that we are only starting to explore and find

through our own children in this group. We have found in many of

our children that they develop an unusually strong memory, perhaps

due to the lack of ability to communicate fully, which can later on

be an incredible asset in the child's academic career. We are also

finding that as long as the child's self esteem stays healthy -there

is nothing they can not do -even speak well -with strategies,

intensive multisensory therapies (and EFAs) and about EFAs -most who

have had the diagnosis for a few months or longer do have at least

one neurodevelopmental MD that oversees their child -as well as at

least one SLP and OT too. In more cases today than ever it's the

child's neurodevelopmental MD that recommends EFA supplementation

with the formulas we mention as successful here (ProEFA, Efalex and

EyeQ are three of the Omega 3/Omega 6 brand names known to " work "

well)

The EFAs -stand for " the essential fatty acids " They are essential

to our bodies -our bodies can not produce them we have to consume

them -they are missing from our diets today and whatever EFAs we do

consume are compromised by the consumption of saturated and

transfatty acids in our diets today. The EFAs we give our child is

just a few drops of either borage seed or primrose oil mixed into a

small capsule of.fish oil- which is all known as healthy and without

side effects (contrary to french fry and doughnut oil much of the

civilized world feeds their children daily without a second

thought) It's funny that we've come so far in both good and bad

ways from our ancestors -and they didn't have the Internet either!

Have you read The Late Talker book that I co authored with my

children's neurodevelopmental pediatrician Marilyn Agin MD -and

international journalist Malcolm Nicholl?

http://www.speech-express.com/late.talker.html

The following is an archived message to a new member that has

information that may also help more. Don't expect to learn

everything overnight -we are all here for you to try to help with

suggestions that you can run by the professionals that work with

your child!

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

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

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

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

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

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

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

answers:

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

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

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

it is?)

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

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

or sensory integration dysfunction?

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

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

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

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

well as an occupational therapist? Was/were they knowledgeable

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

therapist as well and professionals suspect apraxia -I highly

recommend you request that too either through both the school as

well as private through insurance for many reasons)

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

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

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

(private) by a neurodevelopmental medical doctor (developmental

pediatrician or pediatric neurologist) who is knowledgeable about

apraxia and other neurologically based multi-faceted communication

impairments for numerous reasons. Reasons include (but not limited

to)

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

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

*advocacy support with the insurance company

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

reasons for the delay in speech

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

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

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

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

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

popular belief -most who have speech impairments have average to

above average intelligence)

I would also have at least one private " out of pocket " (if possible)

exam with a knowledgeable speech pathologist as well. This SLP can

coordinate with your child's MD, and school therapist and other

professionals, and again be there to assist in a therapeutic plan,

help set goals and oversee your child's development over the years

if needed.

Networking with parents of other speech-impaired children is also

possibly one of the best moves you could make in your child's

recovery. Others will steer you to the " right " professionals and

programs in your area -and you won't feel so alone. I would HIGHLY

recommend joining a whose goal is to unite parents and

professionals. This group

/ is through CHERAB

http://www.cherab.org

The speechville website also has message boards so that you can talk

to other parents on particular topics.

http://www.speech-express.com/boards/

Check your state resources at Speechville to find local support

groups and resources.

http://www.speech-express.com/regional-resources.html

http://www.speech-express.com/communication-station/regional-support-groups.html

(BTW -for anyone who is either running or starting a support group -

due to The Late Talker book and the many who will see your group,

please make sure your info is up at this website and accurate)

For all your other questions including what type of testing -just

read " The Late Talker " . (Nike said 'Just Do It!' -I say 'Just Read

It!') At Amazon.com you can even start today and read sample pages

of the book online!

" The first book to show parents how to tell whether a child has a

speech

delay -or a more serious speech disorder

Every parent eagerly awaits the day his or her child will speak for

the fist

time. For millions of mothers and fathers, however, anticipation

turns to

anxiety when those initial, all-important words are a long time

coming. Many

worried parents are reassured that their child is " just a late

talker, " but

unfortunately, that is not always the case. Co-author