Re: First visit with Developmental pediatrician tomorrow... Getting enough speech?

[Guest guest]

,

You child needs 3-4 hours weekly of individual Speech Therapy an 1-2 hours

of individual OT if he is apraxic. Sounds like he may be. My suggestion is

to take him to the Dev. Ped. get your diagnosis and then start to look at

diet and nutrition and envrionment. I KNOW this sounds overwhelming and like

a pain in the neck, believe me it may just be for a while, but then you WILL

see things improve right before your eyes. Then the good news is that you

become more informed than the rest on what your child needs. You will be

able to customize your child's needs.

This is a terrific group of moms and dads who are trying to piece the puzzle

togher one by one and sharing our marathon along the way. This is a

wonderful time for you to become aggressive about this and continue moving

forward in the right direction. You are already on your way with the Dev.

Ped. Then remember to look at DIET and Nutrition. We are here to help.

Most importantly, TAKE NOTES and Journal Everything!

Colleen

Mother of Charlie 30 months.

[ ] First visit with Developmental pediatrician

tomorrow... Getting enough speech?

Hi there,

Two questions:

I am taking my 3 year old son to a developmental pediatrician for the

first time tomorrow and just thought Id ask if anyone has any last

minute advice?(I know its short notice)I have been told by his PT,

OT, ST and SI

(Special Instructor-music) that he is definitely apraxic. He has

global apraxia, though speech is the worst for him. He doesnt have an

actual diagnosis yet but I am hoping this doctor will give him a

diagnosis so he can maybe recieve more services.

Up until his third birthday he was recieving through BCW PT, OT, ST,

and Music 1/hr wk each, and his music thrapist focused on speech. His

insurance will not cover special instruction (music) so he lost that

a couple weeks ago when he aged out of BCW.

He just started special ed preschool this week and likes it but he is

only getting one 30 min session speech individual and one 30 min

speech as a group. He will be starting with a new ST next week I hope

for 1 hr wk but we are filing for two to see if they will approve.

Receptive he scores high and he understands everything you say to him

but expressive is very, very limited. He can only say 4 or five words

that the average person could probably understand. He does know about

60-80 signs (many he has made up himself to try and communicate)but

he is so far behind I think he needs Speech 4 to 5 days a week to

really help him. Is this something that anyone else has been able to

get on insurance alone or does most everyone private pay for

additional services? What should I expect insurance to pay?

I think the therapy he gets through the school is probably going to

be minimally helpful.

I have heard/ read that age 3-4 yrs is a crucial point for apraxic

kids to learn speech and I dont want him to miss any opportunity to

catch up. Any advice or others experinces are appreciated.

Mom to Zach, 3 and Callan, 1yr

[Guest guest]

Colleen is right. My guy did not even have the receptive and diet

changed that dramatically. Please look for allergens, starting with

dairy. Reverse osmosis water and an air purifier in his room are good

environmental starts. You can go further later and I will happily do

an environmental post of what we saw if you like. The archives will

tell you about milk elimination for those involved.

As for therapy, fight for what you can get, consider fighting for the

Listening Program access and look in the therapy folder for other

ideas. If they can't give you what you need NACD.org is your next

move in my book because yes, the earlier the better and that is the

cheapest way to get a targeted therapy program addressing all of your

child's needs. They will not only work on his weaknesses but also his

strengths. A kid who makes up his own signs is pretty darn creative

and smart and you need to capitalize on that. This is a kid who can

beat this and needs your help to get the right suports.

It is overwhelming but also empowering. More overwhelming to me was

the thought of fighting for services that only addressed part of the

problem rather than tackling the whole and having him grow into

something far worse than what we started with.

Go get'em. Your boy needs his voice and there is a reason you are his

mommy!

Liz

>

> ,

>

> You child needs 3-4 hours weekly of individual Speech Therapy an 1-

2 hours

> of individual OT if he is apraxic. Sounds like he may be. My

suggestion is

> to take him to the Dev. Ped. get your diagnosis and then start to

look at

> diet and nutrition and envrionment. I KNOW this sounds overwhelming

and like

> a pain in the neck, believe me it may just be for a while, but then

you WILL

> see things improve right before your eyes. Then the good news is

that you

> become more informed than the rest on what your child needs. You

will be

> able to customize your child's needs.

>

> This is a terrific group of moms and dads who are trying to piece

the puzzle

> togher one by one and sharing our marathon along the way. This is a

> wonderful time for you to become aggressive about this and continue

moving

> forward in the right direction. You are already on your way with

the Dev.

> Ped. Then remember to look at DIET and Nutrition. We are here to

help.

>

> Most importantly, TAKE NOTES and Journal Everything!

>

> Colleen

>

> Mother of Charlie 30 months.

>

> [ ] First visit with Developmental

pediatrician

> tomorrow... Getting enough speech?

>

>

>

> Hi there,

>

> Two questions:

>

> I am taking my 3 year old son to a developmental pediatrician for

the

> first time tomorrow and just thought Id ask if anyone has any last

> minute advice?(I know its short notice)I have been told by his PT,

> OT, ST and SI

> (Special Instructor-music) that he is definitely apraxic. He has

> global apraxia, though speech is the worst for him. He doesnt have

an

> actual diagnosis yet but I am hoping this doctor will give him a

> diagnosis so he can maybe recieve more services.

>

> Up until his third birthday he was recieving through BCW PT, OT,

ST,

> and Music 1/hr wk each, and his music thrapist focused on speech.

His

> insurance will not cover special instruction (music) so he lost

that

> a couple weeks ago when he aged out of BCW.

>

> He just started special ed preschool this week and likes it but he

is

> only getting one 30 min session speech individual and one 30 min

> speech as a group. He will be starting with a new ST next week I

hope

> for 1 hr wk but we are filing for two to see if they will approve.

>

> Receptive he scores high and he understands everything you say to

him

> but expressive is very, very limited. He can only say 4 or five

words

> that the average person could probably understand. He does know

about

> 60-80 signs (many he has made up himself to try and communicate)but

> he is so far behind I think he needs Speech 4 to 5 days a week to

> really help him. Is this something that anyone else has been able

to

> get on insurance alone or does most everyone private pay for

> additional services? What should I expect insurance to pay?

>

> I think the therapy he gets through the school is probably going to

> be minimally helpful.

>

> I have heard/ read that age 3-4 yrs is a crucial point for apraxic

> kids to learn speech and I dont want him to miss any opportunity to

> catch up. Any advice or others experinces are appreciated.

>

> Mom to Zach, 3 and Callan, 1yr

>

>

>

>

>

>

>

>

[Guest guest]

Hi Liz and Colleen, Thank you for your responses : ) I took Zach to

the Dev Ped today and I really liked her. She was able to get a copy

of an MRI I had done on him a couple months ago and had not been able

to get the neurologist to let me know the results ( Ive had several

bad experiences with neurologists) A brief history as to why he had

the MRI...

I actually adopted Zach. I was a foster parent and he came to live

with me at 5 weeks old. I was told he may have some " problems " but

what they actually were was an unknown. He was handed to me along

with a list of 3 doctors appts he needed to go to the following week.

One being a neurologist.

It was a whirlwind week to say the least! Basically I was told Zach

was from low functioning parents and that he may have some sort of

genetic abnormality or something. Very little medical history was

known. No prenatal care. Mother had seizures and died suddenly, later

found out she had a brain tumor, likely since birth and this could

have easily been the cause of her 'low functioning'.

He has half siblings all with 'issues' from anger to the 3 year old

being non verbal. Its unclear why that was. Theres a lot to the story

that I wont go into here but basically all I knew is that 'something'

was wrong.

He ate well but had severe reflux and went through the gammet of

formulas, finally settling on Alimentum for those that are familiar.

If I recall correctly that is soy based.

He entered BCW (EI) at 5 months with a PT for hypotonia. He had NO

head control at all and didnt hardly move his arms. I was scared to

death his neck would break so i was supporting him like you would a

newborn!

He also never babbled. I new by 10 months something major was going

on with that

I ll try to cut this shorter but basically he had an MRI at about 10

months that was qustionable because he got so uset before they got

him sedated he was still moving 45 minutes later and the reading

wasnt 100 percent. But they found gray matter mixed with white, one

nodular spot on rt side of brain and thinning of corpus collassum.

In a nutshell, a small area of his brain is damaged.

The second MRI showed the same, which is unchanged from what they

read the first time. The cause is unknown, but it happened in utero,

before 32 weeks and it could have been something as mild as his bio

mother having an infection (cold), or trauma caused by abuse, or

possibly she had a seizure while pregnant and he lost oxygen causing

his brain to bleed.

Its irreversable, yet the Dev Ped feels confident that he can use

other parts of brain to compensate and because he does seem to be so

bright and eager to learn/ communicate- he can overcome with therapy.

All genetic testing came back normal.

I want to do everything in my power to help him. Has anyone else on

here had MRIs done?

I am very interested in learning about milk connection since he has/

does have digestive issues. He is currently on lactose free milk and

has been since going off formula. He was on reflux meds up until less

than a yr ago.

I am going to keep reading and learning and I appreciate everyones

advice!

Also, still trying to email off list some of you who responded that

live near me. Thanks again!

> >

> > ,

> >

> > You child needs 3-4 hours weekly of individual Speech Therapy an

1-

> 2 hours

> > of individual OT if he is apraxic. Sounds like he may be. My

> suggestion is

> > to take him to the Dev. Ped. get your diagnosis and then start to

> look at

> > diet and nutrition and envrionment. I KNOW this sounds

overwhelming

> and like

> > a pain in the neck, believe me it may just be for a while, but

then

> you WILL

> > see things improve right before your eyes. Then the good news is

> that you

> > become more informed than the rest on what your child needs. You

> will be

> > able to customize your child's needs.

> >

> > This is a terrific group of moms and dads who are trying to piece

> the puzzle

> > togher one by one and sharing our marathon along the way. This is

a

> > wonderful time for you to become aggressive about this and

continue

> moving

> > forward in the right direction. You are already on your way with

> the Dev.

> > Ped. Then remember to look at DIET and Nutrition. We are here to

> help.

> >

> > Most importantly, TAKE NOTES and Journal Everything!

> >

> > Colleen

> >

> > Mother of Charlie 30 months.

> >

> > [ ] First visit with Developmental

> pediatrician

> > tomorrow... Getting enough speech?

> >

> >

> >

> > Hi there,

> >

> > Two questions:

> >

> > I am taking my 3 year old son to a developmental pediatrician for

> the

> > first time tomorrow and just thought Id ask if anyone has any

last

> > minute advice?(I know its short notice)I have been told by his

PT,

> > OT, ST and SI

> > (Special Instructor-music) that he is definitely apraxic. He has

> > global apraxia, though speech is the worst for him. He doesnt

have

> an

> > actual diagnosis yet but I am hoping this doctor will give him a

> > diagnosis so he can maybe recieve more services.

> >

> > Up until his third birthday he was recieving through BCW PT, OT,

> ST,

> > and Music 1/hr wk each, and his music thrapist focused on speech.

> His

> > insurance will not cover special instruction (music) so he lost

> that

> > a couple weeks ago when he aged out of BCW.

> >

> > He just started special ed preschool this week and likes it but

he

> is

> > only getting one 30 min session speech individual and one 30 min

> > speech as a group. He will be starting with a new ST next week I

> hope

> > for 1 hr wk but we are filing for two to see if they will approve.

> >

> > Receptive he scores high and he understands everything you say to

> him

> > but expressive is very, very limited. He can only say 4 or five

> words

> > that the average person could probably understand. He does know

> about

> > 60-80 signs (many he has made up himself to try and communicate)

but

> > he is so far behind I think he needs Speech 4 to 5 days a week to

> > really help him. Is this something that anyone else has been able

> to

> > get on insurance alone or does most everyone private pay for

> > additional services? What should I expect insurance to pay?

> >

> > I think the therapy he gets through the school is probably going

to

> > be minimally helpful.

> >

> > I have heard/ read that age 3-4 yrs is a crucial point for

apraxic

> > kids to learn speech and I dont want him to miss any opportunity

to

> > catch up. Any advice or others experinces are appreciated.

> >

> > Mom to Zach, 3 and Callan, 1yr

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Re:

Its irreversable, yet the Dev Ped feels confident that he can use

other parts of brain to compensate and because he does seem to be so

bright and eager to learn/ communicate- he can overcome with therapy.

That is neuroplasticity. NACD works this. See the archives for milk.

Janice and I have written a lot on it.

Please consider NACD.

> > >

> > > ,

> > >

> > > You child needs 3-4 hours weekly of individual Speech Therapy

an

> 1-

> > 2 hours

> > > of individual OT if he is apraxic. Sounds like he may be. My

> > suggestion is

> > > to take him to the Dev. Ped. get your diagnosis and then start

to

> > look at

> > > diet and nutrition and envrionment. I KNOW this sounds

> overwhelming

> > and like

> > > a pain in the neck, believe me it may just be for a while, but

> then

> > you WILL

> > > see things improve right before your eyes. Then the good news

is

> > that you

> > > become more informed than the rest on what your child needs.

You

> > will be

> > > able to customize your child's needs.

> > >

> > > This is a terrific group of moms and dads who are trying to

piece

> > the puzzle

> > > togher one by one and sharing our marathon along the way. This

is

> a

> > > wonderful time for you to become aggressive about this and

> continue

> > moving

> > > forward in the right direction. You are already on your way

with

> > the Dev.

> > > Ped. Then remember to look at DIET and Nutrition. We are here

to

> > help.

> > >

> > > Most importantly, TAKE NOTES and Journal Everything!

> > >

> > > Colleen

> > >

> > > Mother of Charlie 30 months.

> > >

> > > [ ] First visit with Developmental

> > pediatrician

> > > tomorrow... Getting enough speech?

> > >

> > >

> > >

> > > Hi there,

> > >

> > > Two questions:

> > >

> > > I am taking my 3 year old son to a developmental pediatrician

for

> > the

> > > first time tomorrow and just thought Id ask if anyone has any

> last

> > > minute advice?(I know its short notice)I have been told by his

> PT,

> > > OT, ST and SI

> > > (Special Instructor-music) that he is definitely apraxic. He

has

> > > global apraxia, though speech is the worst for him. He doesnt

> have

> > an

> > > actual diagnosis yet but I am hoping this doctor will give him

a

> > > diagnosis so he can maybe recieve more services.

> > >

> > > Up until his third birthday he was recieving through BCW PT,

OT,

> > ST,

> > > and Music 1/hr wk each, and his music thrapist focused on

speech.

> > His

> > > insurance will not cover special instruction (music) so he lost

> > that

> > > a couple weeks ago when he aged out of BCW.

> > >

> > > He just started special ed preschool this week and likes it but

> he

> > is

> > > only getting one 30 min session speech individual and one 30

min

> > > speech as a group. He will be starting with a new ST next week

I

> > hope

> > > for 1 hr wk but we are filing for two to see if they will

approve.

> > >

> > > Receptive he scores high and he understands everything you say

to

> > him

> > > but expressive is very, very limited. He can only say 4 or five

> > words

> > > that the average person could probably understand. He does know

> > about

> > > 60-80 signs (many he has made up himself to try and communicate)

> but

> > > he is so far behind I think he needs Speech 4 to 5 days a week

to

> > > really help him. Is this something that anyone else has been

able

> > to

> > > get on insurance alone or does most everyone private pay for

> > > additional services? What should I expect insurance to pay?

> > >

> > > I think the therapy he gets through the school is probably

going

> to

> > > be minimally helpful.

> > >

> > > I have heard/ read that age 3-4 yrs is a crucial point for

> apraxic

> > > kids to learn speech and I dont want him to miss any

opportunity

> to

> > > catch up. Any advice or others experinces are appreciated.

> > >

> > > Mom to Zach, 3 and Callan, 1yr

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Milk is an allergen...one of the big ones to target when looking at

digestion. There are tests but removal is the most accurate,

especially in young children. Some on the board find hemp milk to be

a good sub. Just make sure it is dairy free.

> > > >

> > > > ,

> > > >

> > > > You child needs 3-4 hours weekly of individual Speech Therapy

> an

> > 1-

> > > 2 hours

> > > > of individual OT if he is apraxic. Sounds like he may be. My

> > > suggestion is

> > > > to take him to the Dev. Ped. get your diagnosis and then

start

> to

> > > look at

> > > > diet and nutrition and envrionment. I KNOW this sounds

> > overwhelming

> > > and like

> > > > a pain in the neck, believe me it may just be for a while,

but

> > then

> > > you WILL

> > > > see things improve right before your eyes. Then the good news

> is

> > > that you

> > > > become more informed than the rest on what your child needs.

> You

> > > will be

> > > > able to customize your child's needs.

> > > >

> > > > This is a terrific group of moms and dads who are trying to

> piece

> > > the puzzle

> > > > togher one by one and sharing our marathon along the way.

This

> is

> > a

> > > > wonderful time for you to become aggressive about this and

> > continue

> > > moving

> > > > forward in the right direction. You are already on your way

> with

> > > the Dev.

> > > > Ped. Then remember to look at DIET and Nutrition. We are here

> to

> > > help.

> > > >

> > > > Most importantly, TAKE NOTES and Journal Everything!

> > > >

> > > > Colleen

> > > >

> > > > Mother of Charlie 30 months.

> > > >

> > > > [ ] First visit with Developmental

> > > pediatrician

> > > > tomorrow... Getting enough speech?

> > > >

> > > >

> > > >

> > > > Hi there,

> > > >

> > > > Two questions:

> > > >

> > > > I am taking my 3 year old son to a developmental pediatrician

> for

> > > the

> > > > first time tomorrow and just thought Id ask if anyone has any

> > last

> > > > minute advice?(I know its short notice)I have been told by

his

> > PT,

> > > > OT, ST and SI

> > > > (Special Instructor-music) that he is definitely apraxic. He

> has

> > > > global apraxia, though speech is the worst for him. He doesnt

> > have

> > > an

> > > > actual diagnosis yet but I am hoping this doctor will give

him

> a

> > > > diagnosis so he can maybe recieve more services.

> > > >

> > > > Up until his third birthday he was recieving through BCW PT,

> OT,

> > > ST,

> > > > and Music 1/hr wk each, and his music thrapist focused on

> speech.

> > > His

> > > > insurance will not cover special instruction (music) so he

lost

> > > that

> > > > a couple weeks ago when he aged out of BCW.

> > > >

> > > > He just started special ed preschool this week and likes it

but

> > he

> > > is

> > > > only getting one 30 min session speech individual and one 30

> min

> > > > speech as a group. He will be starting with a new ST next

week

> I

> > > hope

> > > > for 1 hr wk but we are filing for two to see if they will

> approve.

> > > >

> > > > Receptive he scores high and he understands everything you

say

> to

> > > him

> > > > but expressive is very, very limited. He can only say 4 or

five

> > > words

> > > > that the average person could probably understand. He does

know

> > > about

> > > > 60-80 signs (many he has made up himself to try and

communicate)

> > but

> > > > he is so far behind I think he needs Speech 4 to 5 days a

week

> to

> > > > really help him. Is this something that anyone else has been

> able

> > > to

> > > > get on insurance alone or does most everyone private pay for

> > > > additional services? What should I expect insurance to pay?

> > > >

> > > > I think the therapy he gets through the school is probably

> going

> > to

> > > > be minimally helpful.

> > > >

> > > > I have heard/ read that age 3-4 yrs is a crucial point for

> > apraxic

> > > > kids to learn speech and I dont want him to miss any

> opportunity

> > to

> > > > catch up. Any advice or others experinces are appreciated.

> > > >

> > > > Mom to Zach, 3 and Callan, 1yr

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >