RE: Re: Officially diangosed - now what tests/specialists?

[Guest guest]

o.k iam lost once again....just came from the in shop service site

....wanting to order...but what excatly do i order ...is it ....both pro epa

....and pro efa...they have a combo special....and what and how many pills

due my brianna take....

>From: " myjunkytrash " <myjunkytrash@...>

>Reply-

>

>Subject: [ ] Re: Officially diangosed - now what

>tests/specialists?

>Date: Sat, 02 Sep 2006 01:48:37 -0000

>

> " Our private insurance simply doesn't cover any therapy

>for a developmental delay "

>

>It's debatable that SPD/SID and apraxia are " developmental delays. "

>Many have argued successfully that these are neurological

>disorders. You have to really wrestle with your private insurance

>to get them to cover these therapies. First rule is NEVER concede

>these problems are " developmental. " There are lots of people on

>this group who know more about dealing with the insurance companies

>than I, but I do suggest that you don't give up. Also, for what

>it's worth, I am a big supporter of OT. Even though my son's OT

>issues were not obvious to me, getting an SI-trained (very important

>that the OT be SI trained) OT made the biggest difference for him--

>even in speech. It's all connected. I am so amazed at how

>resistant some people are to OT. I don't get it. I tell everyone

>who is interested (and often times many who aren't!) to try it. It

>is an important piece of the puzzle.

>

>

> > > >

> > > > We officially got a Verbal Apraxia diagnoses on Monday.

>Thanks

> > to

> > > the

> > > > Late Talker book and this site it wasn't a surprise to me and

>I

> > > didn't

> > > > freak out not knowing anything about it. I'm almost glad to

> > > receive

> > > > the diagnosis because now I feel like we can move forward with

>my

> > > > husband, family, and doctors taking me seriously!!

> > > >

> > > > There's a 2-4 month waiting list for therapy at the childrens

> > > hospital

> > > > so we're going to a different clinic in the meantime, or

>instead

> > of

> > > > depending on how it goes.

> > > >

> > > > Someone on another list I'm on suggested taking her to an OT

> > > because

> > > > they might help identify any sensory issues she has (I can't

> > figure

> > > > out if it's just extra frustration at not being able to talk,

>or

> > > too

> > > > many kids around -both my top 2 guesses, or just too much

>noise or

> > > > what). It's usually when there's too many kids around she'll

> > freak

> > > > out. Usually it has something to do with a toy she had been

> > > playing

> > > > with, or might want to play with, or is similar to one she is

> > > playing

> > > > with, so it's easy to write it off as a typical toddler thing,

> > > except

> > > > that her emotions are 50 x more extreme than any other toddler

> > I've

> > > > ever seen. Is this something that you'd recommend? Would

>talking

> > > > with the EI OT be good enough (we're starting weekly group

> > sessions

> > > > next week)? Or would it be better to do an actual evaluation

> > with

> > > a

> > > > private OT?

> > > >

> > > > What type of tests should I ask our pediatrician to run? I

>know

> > > > mentioned a whole list of bloodwork recently that I

>have.

> > > > Anything else? There's no real definitive test for Apraxia

> > > right?

> > > >

> > > > We've also been talking about seeing a DAN doctor for Mercury

> > > removal

> > > > (my mom has high levels of several heavy metals, and I haven't

> > > gotten

> > > > tested yet). Is this something that insurance might cover at

> > all?

> > > > Everyone I can find in our area seems to be out of network.

> > > >

> > > > We started on fish oil (1 EFA 2x a day) three weeks ago, and we

> > > > started on the Vitamin E (1 200mg 2x a day) just over a week

> > ago.

> > > I

> > > > don't know which is doing the improving therefore, but for the

> > past

> > > > week she's been making wonderful improvements!!! She still

> > scored

> > > at

> > > > 8% of other kids for expressive, but to us she's amazing!!!

> > Today

> > > she

> > > > said noooo several times (although her face wasn't in an o

> > > shape)!!!

> > > >

> > > > Thanks for any advice, I've spent all this time preparing for

>the

> > > > diagnosis, but still don't feel like I know where to go next!!

> > > >

> > > > Crystal

> > > >

> > >

> >

>

>

>

>

>

>

>

>

>

>

[Guest guest]

o.k iam lost once again....just came from the in shop service site

....wanting to order...but what excatly do i order ...is it ....both pro epa

....and pro efa...they have a combo special....and what and how many pills

due my brianna take....

>From: " myjunkytrash " <myjunkytrash@...>

>Reply-

>

>Subject: [ ] Re: Officially diangosed - now what

>tests/specialists?

>Date: Sat, 02 Sep 2006 01:48:37 -0000

>

> " Our private insurance simply doesn't cover any therapy

>for a developmental delay "

>

>It's debatable that SPD/SID and apraxia are " developmental delays. "

>Many have argued successfully that these are neurological

>disorders. You have to really wrestle with your private insurance

>to get them to cover these therapies. First rule is NEVER concede

>these problems are " developmental. " There are lots of people on

>this group who know more about dealing with the insurance companies

>than I, but I do suggest that you don't give up. Also, for what

>it's worth, I am a big supporter of OT. Even though my son's OT

>issues were not obvious to me, getting an SI-trained (very important

>that the OT be SI trained) OT made the biggest difference for him--

>even in speech. It's all connected. I am so amazed at how

>resistant some people are to OT. I don't get it. I tell everyone

>who is interested (and often times many who aren't!) to try it. It

>is an important piece of the puzzle.

>

>

> > > >

> > > > We officially got a Verbal Apraxia diagnoses on Monday.

>Thanks

> > to

> > > the

> > > > Late Talker book and this site it wasn't a surprise to me and

>I

> > > didn't

> > > > freak out not knowing anything about it. I'm almost glad to

> > > receive

> > > > the diagnosis because now I feel like we can move forward with

>my

> > > > husband, family, and doctors taking me seriously!!

> > > >

> > > > There's a 2-4 month waiting list for therapy at the childrens

> > > hospital

> > > > so we're going to a different clinic in the meantime, or

>instead

> > of

> > > > depending on how it goes.

> > > >

> > > > Someone on another list I'm on suggested taking her to an OT

> > > because

> > > > they might help identify any sensory issues she has (I can't

> > figure

> > > > out if it's just extra frustration at not being able to talk,

>or

> > > too

> > > > many kids around -both my top 2 guesses, or just too much

>noise or

> > > > what). It's usually when there's too many kids around she'll

> > freak

> > > > out. Usually it has something to do with a toy she had been

> > > playing

> > > > with, or might want to play with, or is similar to one she is

> > > playing

> > > > with, so it's easy to write it off as a typical toddler thing,

> > > except

> > > > that her emotions are 50 x more extreme than any other toddler

> > I've

> > > > ever seen. Is this something that you'd recommend? Would

>talking

> > > > with the EI OT be good enough (we're starting weekly group

> > sessions

> > > > next week)? Or would it be better to do an actual evaluation

> > with

> > > a

> > > > private OT?

> > > >

> > > > What type of tests should I ask our pediatrician to run? I

>know

> > > > mentioned a whole list of bloodwork recently that I

>have.

> > > > Anything else? There's no real definitive test for Apraxia

> > > right?

> > > >

> > > > We've also been talking about seeing a DAN doctor for Mercury

> > > removal

> > > > (my mom has high levels of several heavy metals, and I haven't

> > > gotten

> > > > tested yet). Is this something that insurance might cover at

> > all?

> > > > Everyone I can find in our area seems to be out of network.

> > > >

> > > > We started on fish oil (1 EFA 2x a day) three weeks ago, and we

> > > > started on the Vitamin E (1 200mg 2x a day) just over a week

> > ago.

> > > I

> > > > don't know which is doing the improving therefore, but for the

> > past

> > > > week she's been making wonderful improvements!!! She still

> > scored

> > > at

> > > > 8% of other kids for expressive, but to us she's amazing!!!

> > Today

> > > she

> > > > said noooo several times (although her face wasn't in an o

> > > shape)!!!

> > > >

> > > > Thanks for any advice, I've spent all this time preparing for

>the

> > > > diagnosis, but still don't feel like I know where to go next!!

> > > >

> > > > Crystal

> > > >

> > >

> >

>

>

>

>

>

>

>

>

>

>

[Guest guest]

-

" ...OT seemed (and still does sometimes!) like bits of science mixed

with bits of

voodoo. "

I felt the same way! started OT in December and it all seemed

kind of weird to me then. But I am a believer now. has some

common comorbid sensory issues often found with apraxia - oral motor

defensiveness, mild fine motor issues - that manifest themselves in

different ways. We are transitioning to school district services from

EI this week and will continue with OT. I am so glad.

Warm regards,

******************

(Rochester, NY)

Mom to , 3.3 years, Verbal Apraxia

& , 1.1 years (and babbling away!)

________________________________

From:

[mailto: ] On Behalf Of karen_peikert

Sent: Friday, September 01, 2006 12:07 AM

Subject: [ ] Re: Officially diangosed - now what

tests/specialists?

Crystal-

In hindsight, I wish I had spent as much time looking into OT and

sensory issues in the early years as I did with speech. I think the

apraxia just seemed more tangible to me at the time, and OT seemed

(and still does sometimes!) like bits of science mixed with bits of

voodoo. It is the part of 's therapies that my husband and I

have had to spend the most research time on in the last couple of

years - attending conferences and doing extra reading - because

today my son lags further behind in OT related skills than he does

in langauge.

That is a long way of saying, I WOULD look into having OT in EI.

Many kids with apraxia seem to be affected by sensory issues which

can, and sometimes do, affect their learning.

>

> We officially got a Verbal Apraxia diagnoses on Monday. Thanks to

the

> Late Talker book and this site it wasn't a surprise to me and I

didn't

> freak out not knowing anything about it. I'm almost glad to

receive

> the diagnosis because now I feel like we can move forward with my

> husband, family, and doctors taking me seriously!!

>

> There's a 2-4 month waiting list for therapy at the childrens

hospital

> so we're going to a different clinic in the meantime, or instead of

> depending on how it goes.

>

> Someone on another list I'm on suggested taking her to an OT

because

> they might help identify any sensory issues she has (I can't figure

> out if it's just extra frustration at not being able to talk, or

too

> many kids around -both my top 2 guesses, or just too much noise or

> what). It's usually when there's too many kids around she'll freak

> out. Usually it has something to do with a toy she had been

playing

> with, or might want to play with, or is similar to one she is

playing

> with, so it's easy to write it off as a typical toddler thing,

except

> that her emotions are 50 x more extreme than any other toddler I've

> ever seen. Is this something that you'd recommend? Would talking

> with the EI OT be good enough (we're starting weekly group sessions

> next week)? Or would it be better to do an actual evaluation with

a

> private OT?

>

> What type of tests should I ask our pediatrician to run? I know

> mentioned a whole list of bloodwork recently that I have.

> Anything else? There's no real definitive test for Apraxia

right?

>

> We've also been talking about seeing a DAN doctor for Mercury

removal

> (my mom has high levels of several heavy metals, and I haven't

gotten

> tested yet). Is this something that insurance might cover at all?

> Everyone I can find in our area seems to be out of network.

>

> We started on fish oil (1 EFA 2x a day) three weeks ago, and we

> started on the Vitamin E (1 200mg 2x a day) just over a week ago.

I

> don't know which is doing the improving therefore, but for the past

> week she's been making wonderful improvements!!! She still scored

at

> 8% of other kids for expressive, but to us she's amazing!!! Today

she

> said noooo several times (although her face wasn't in an o

shape)!!!

>

> Thanks for any advice, I've spent all this time preparing for the

> diagnosis, but still don't feel like I know where to go next!!

>

> Crystal

>

[Guest guest]

-

" ...OT seemed (and still does sometimes!) like bits of science mixed

with bits of

voodoo. "

I felt the same way! started OT in December and it all seemed

kind of weird to me then. But I am a believer now. has some

common comorbid sensory issues often found with apraxia - oral motor

defensiveness, mild fine motor issues - that manifest themselves in

different ways. We are transitioning to school district services from

EI this week and will continue with OT. I am so glad.

Warm regards,

******************

(Rochester, NY)

Mom to , 3.3 years, Verbal Apraxia

& , 1.1 years (and babbling away!)

________________________________

From:

[mailto: ] On Behalf Of karen_peikert

Sent: Friday, September 01, 2006 12:07 AM

Subject: [ ] Re: Officially diangosed - now what

tests/specialists?

Crystal-

In hindsight, I wish I had spent as much time looking into OT and

sensory issues in the early years as I did with speech. I think the

apraxia just seemed more tangible to me at the time, and OT seemed

(and still does sometimes!) like bits of science mixed with bits of

voodoo. It is the part of 's therapies that my husband and I

have had to spend the most research time on in the last couple of

years - attending conferences and doing extra reading - because

today my son lags further behind in OT related skills than he does

in langauge.

That is a long way of saying, I WOULD look into having OT in EI.

Many kids with apraxia seem to be affected by sensory issues which

can, and sometimes do, affect their learning.

>

> We officially got a Verbal Apraxia diagnoses on Monday. Thanks to

the

> Late Talker book and this site it wasn't a surprise to me and I

didn't

> freak out not knowing anything about it. I'm almost glad to

receive

> the diagnosis because now I feel like we can move forward with my

> husband, family, and doctors taking me seriously!!

>

> There's a 2-4 month waiting list for therapy at the childrens

hospital

> so we're going to a different clinic in the meantime, or instead of

> depending on how it goes.

>

> Someone on another list I'm on suggested taking her to an OT

because

> they might help identify any sensory issues she has (I can't figure

> out if it's just extra frustration at not being able to talk, or

too

> many kids around -both my top 2 guesses, or just too much noise or

> what). It's usually when there's too many kids around she'll freak

> out. Usually it has something to do with a toy she had been

playing

> with, or might want to play with, or is similar to one she is

playing

> with, so it's easy to write it off as a typical toddler thing,

except

> that her emotions are 50 x more extreme than any other toddler I've

> ever seen. Is this something that you'd recommend? Would talking

> with the EI OT be good enough (we're starting weekly group sessions

> next week)? Or would it be better to do an actual evaluation with

a

> private OT?

>

> What type of tests should I ask our pediatrician to run? I know

> mentioned a whole list of bloodwork recently that I have.

> Anything else? There's no real definitive test for Apraxia

right?

>

> We've also been talking about seeing a DAN doctor for Mercury

removal

> (my mom has high levels of several heavy metals, and I haven't

gotten

> tested yet). Is this something that insurance might cover at all?

> Everyone I can find in our area seems to be out of network.

>

> We started on fish oil (1 EFA 2x a day) three weeks ago, and we

> started on the Vitamin E (1 200mg 2x a day) just over a week ago.

I

> don't know which is doing the improving therefore, but for the past

> week she's been making wonderful improvements!!! She still scored

at

> 8% of other kids for expressive, but to us she's amazing!!! Today

she

> said noooo several times (although her face wasn't in an o

shape)!!!

>

> Thanks for any advice, I've spent all this time preparing for the

> diagnosis, but still don't feel like I know where to go next!!

>

> Crystal

>