Dr. agin

January 6, 2006

Ok, can we all agree to disagree and move on?

denise

January 6, 2006

hi denise- i know you are not writing to me but would like to share our

experience with you. My son and i spent atleast 8 hours at a teaching hospital

called the alfred healy center for dissabilities in iowa city. the appointment

involved a written questionair from my sons school, a written report from the

slp at school, the private slp, the private ot, a iq test, hearing test (we were

unable to do) speech evaluation (we were unable to do) an exam from a

developmental pediatrician, an educational consultant and a social worker. The

cost

was about the same 1600 dollars. I think 1600 dollars is alot of money but

when i think about it you cant get alot for 1600 dollars anymore. Iowa is where

I live and this is a low wage state and the only way we were able to get the

evaluation done was with assistance from the state . We have traveled before

to the mayo clinic but our insurance would only pay if we were unable to

provide the same services here, when we went there we had to pay for our care in

advance and they helped us with the filling out the insurance papers and we were

reimbursed. It was explained to us that they do this with elective procedures

in an attempt to keep their costs down. Des Moines Iowa has a population of

about 150000 but only 1 pediatric dentist who will accept medicaid. I hope you

find that as shocking as I DO. My primary MD was able to give us the apraxia

diagnosis because we had the clinical data to back it up. I know we could never

afford the trip to New York although it may be tax deductible. If it is tax

deductible it could make the trip more affordable. If our insurance companys

would cover our speech and occupational therapy as they should because of the

diagnosis it would save us alot more than the cost of the evaluation. We did

get alot more services through the school because of our evaluation . I would

like to add that I do not think that my Josh could handle a trip that lasted

more than 30 minutes because he cant sit still and we exhausted all our

resources in the hopes that aggressive therapy would pay off and it has.

charlotte

henry

January 6, 2006

it's hard for me to drop it when I feel someone I respect who

has done more for verbal apraxia in raising awareness to the medical

community in a few years than anyone else has done in a century has

been attacked. And it's shocking to me that people just don't 'get

it' that it's time -not money that is the difference. When we speak

about rates, you guys do understand that Dr. Marilyn Agin, co author

of The Late Talker, isn't different in comparison in rates to other

doctors when you talk about time spent.

The neuroMDs at Children's Hospital for example for a 30-40 minute

appointment, which granted may be sufficiant for some children, bill

insurance 400 dollars for that appointment. Multiply 400 times four

and a half hours (and that's giving the benefit of the doubt that

the appointment is 40 minutes and not 30) and it comes out to just

under 2000 for the three hours. That's not figuring the hours Dr.

Agin spends above and far beyond others in pre and post appointment

time with lengthy reports, phone calls, emails to SLPs and schools and

parents etc. (see more below)

Remember when I spoke about the complaints even when the charge was

$100? It wasn't complaints -it was one complaint. Some of you guys

ruin it for the rest and I'll tell you how. A few years ago, Kaufman SLP

and other

professionals provided what's called " video consults " for $100 where

you submit a tape with intake forms, and via phone and email you are

given an informal evaluation. Works out great for those who can't

afford the time and money to travel but just want an overview

opinion, or those who would like an outside quick opinion. Back then, Dr. Agin

tried doing this for about a month or so to help...until:

One husband and wife was furious that they were charged $100 for the

evaluation. Nobody knows why they thought it was free but they just

thought it was free. Dr. Agin told them " Pay me whatever you

believe my time is worth. " She was very hurt because she had spent

hours back and forth with them via the phone and email. They felt

since she was outreaching with CHERAB that her evaluation should be

free. She said " That's fine don't pay me anything " Those greedy

people ruined it for all the rest because that day there and then

Dr. Agin stopped doing video consults.

We all make a choice based on a number of factors before we take our

child for an evaluation. Before " someone " wants to call what a respected

medical doctor does a " racket " , where Dr. Agin has to read the

hurtful words here even before this person cancels her appointment (which

still isn't canceled) She could have just called Dr. Agin's office and

see if something could be worked out. As I said she's worked out

things for others, and she has a heart of gold.

And PS to those of you from NJ - there are so many children with

multifaceted communication impairments in NJ that the average

neuroMD there has extensive experience far beyond the norm of other

neuroMDs in other areas. But still -those that accept insurance

can 'not' provide what Dr. Agin is able to in time.

Again the letter to new patients:

" Fall 2005

Dear Families:

Firstly, thank you for choosing my practice to evaluate your

child/children. Our examinations are comprehensive, including a

review of records, family interview, neurologic exam, and when

appropriate, standardized testing to evaluate cognitive (thinking)

processes, motor development, speech and language abilities and

behavior. Generally, your initial evaluation is a total of 3 hours

that may be scheduled as either one visit or divided into two

visits. If you are scheduled for 2 visits, the first one will be a

comprehensive developmental evaluation by the speech language

pathologist. The follow-up appointment is with Dr. Agin, 1-2 weeks

later. She will examine your child and discuss the findings of the

evaluation. The developmental evaluation will be videotaped. If you

are coming for a second visit, we suggest you either bring a

caretaker with you to watch your child while we are speaking. If

that is not possible, my secretary will supervise your child in the

waiting room. (I feel strongly that a child who has the capacity to

understand what may be said about him or her, should not be present

for the parent conference). If for any reason additional time is

needed to obtain a more comprehensive picture of your child, an

additional visit will be set up, and/or a videotape/DVD will be

requested to reflect your child in his natural environment (home,

setting, school, therapy session, etc.). It is our intent to achieve

an accurate picture of your child that is most representative of

his/her behaviors, before completing the report.

After the evaluation is completed, a comprehensive report is sent to

you and copied to any professionals you choose. We pride ourselves

in writing a report that not only provides an accurate account of

your child's background history, current development, and present

needs, but provides a diagnostic assessment summary which

underscores the critical factors that are impacting on your child's

development, along with a detailed set of specific recommendations

that will assist you in advocating for an appropriate treatment

plan. We will also consult with your child's teachers, therapists,

pediatrician or pediatric specialists whenever necessary, and

provide you with a letter of medical necessity for your insurance

provider when applicable.

Your child will be evaluated by either myself, or Prashil Govind,

MD, FAAP a developmental pediatrician who received his training at

the Rose F. Kennedy Center, Albert Einstein College of Medicine. He

also has a Masters degree in Public Health from Columbia University.

Although we as physicians remain the primary evaluator for your

child, Marni Tangney, Msc (A), CCC/SLP and Dwyer, MA, CCC/SLP,

who are PROMPT-trained speech/language pathologists, will contribute

to the evaluation process.

Please refer to the fee schedule on the following page. Although I

am not a direct participating member with any of the health

providers, if your plan allows for out-of-network coverage, you

should be able to collect some reimbursement of the fee. I will

provide you with a statement that has the appropriate codes to

submit to your insurance company. Reimbursement rates for the

neurodevelopmental evaluation vary depending on your policy. Some

providers will not recognize out-of-network physicians, and others

will reimburse up to 80% of the fee after your deductible has been

satisfied. Please call us if you have any questions about insurance

issues.

Please fill out the enclosed intake form and return to us after you

receive this packet. We ask you to send this form and any other

supplementary reports well in advance of your appointment. This

gives us the opportunity to begin to evaluation process and

understand your child's particular needs in advance of your visit.

We look forward to meeting you, and especially your child!

Sincerely,

Marilyn C. Agin, MD, FAAP "

So when you figure out how much a doctor's visit costs -why not just

look at your co pay (which by the way I didn't even include in the

numbers up above) and look at " quality time "

=====

January 6, 2006

Geez, now I feel like I am being attacked. I am assuming that I am

the one you are talking about that hasn't cancelled my appoinment

yet. If that is the case, I am actually rather appalled that you

would either call her office to see if I cancelled my appointment yet

or if someone from her office volunteered that information (I have to

believe that this is a HUGE violation of the HIPPA laws-you know,

doctor-patient PRIVACY!!!!).

Furthermore, I never said that I was definitely cancelling it. All I

said was that I am seriously weighing whether or not it would

actually be worth the $2,000 fee (not to mention, that is just a huge

chunk of change and it would seriously impact what I can do for Amber-

I would have to reduce her therapy that I am paying $65 a session for

(our therapist is still going through the process of being approved

to accept our insurance-a process that is now in month three). In

addition, our state has decided to begin charging us a monthly

premium for our supplemental insurance that will be upwards of $200

(hasn't kicked in yet, but it will shortly).

My daughter's neurodevelopmental pediatrician spent 2.5 hours with me

for our first appointment and it cost me nothing (covered completely

by our insurance and our co-pay was picked up by our state insurance

which covers my daughter because of her disabilties). And while he

doesn't specialize in apraxia, he did pick " soft signs " (hypotonia,

apraxia, PDD-NOS, global developmental delays).

It is clear that you are surrounded by people that either come from

money or make lots of it (who else could afford to give you a $1,000

gift to a stylist to tell you what colors you should wear), but not

everyone else just has $2,000 to cough up. I know the only way I

could even begin to think about paying for it, would be to stop her

therapy or cut it back significantly. It was truly a struggle for me

to decide what to do.

I understand that Dr. Agin is a world-renowned expert in apraxia and

she is more than able to charge what she wants (and people that can

afford to pay it, will do it without question). I am a big fan of

our capitalistic society and I never begrudge anyone from making a

buck (or lots of them!!). What irritats me is how she is always

talked about as only caring about the children. While I have no

doubt that she truly does care about the kids that she treats, let's

face it, the only kids she will treat are the ones with parents that

can afford her fees. Again, that is her right and I am not putting

her down for being able to charge what I consider exhorbitant fees (I

am not from NYC and her fee is about 8-10% of the median ANNUAL

household income in the area that I live-just to give you some

perspective of where my thoughts are coming from-possible not a fair

analysis but that is where my perspective is coming from). Just be

honest with the public-she is a world-renowned specialist who can

work miracles, as long as you can afford to pay for them. I am a

staunch republican and I can appreciate her right to charge whatever

people are willing to pay (I am not looking for handouts and that was

not the basis of my original post).

Just to clarify, I don't remember calling Dr. Agin's practive

a " racket " . From all I have read, she is a great doctor and can

charge whatever she likes (and to clarify further, I never said I

didn't think she was a good/great doctor, I was questioning whether

my $2,000 couldn't be better utilized). I did make a comment about

me not wanting to " pad her pockets " , but that was tongue-in-cheek, as

I know that if I do wind up canceling, someone else will snatch up my

spot in a minute (when I was in my desparate " I will pay whatever

anyone asks as long as they can fix my daughter " mode last summer, I

was put on her cancellation list and I never got a call!!).

It is clear that she is a close friend of yours and that I offended

you unintentionally. I am not an active poster here (more of an

occassional lurker) and didn't realize that you were close with Dr.

Agin and I certainly didn't realize that she read any of the posts

here. I would never intentionally hurt anyone.

January 8, 2006

, I respect you tremendously for all the help YOU have given parents

without any financial gain but just to help.

But I agree completely with . We all have different experiences with

all doctors, including Dr. Agin. I have been to more than 20 specialists

including her. We did not have a 3 hour exam but maybe that has changed. Yes,

it

takes some searching, but I found great doctors who do take insurance and who

did understand apraxia and that efa's can be beneficial.

$2000 is a lot to many if not most people. Of course, doctors can charge what

they want, but parents have the right to decide not to go either.

You are a great help to so many. I think we should just recognize everyone's

experience or opinion about a specialist isn't the same and respect that as

the case and not have to justify why.

As usual, thank you for your support for me and my child as well as everyone

else's. Carolyn

>

> I didn't catch that dangerous turn. From what I gather we all agree

> there are other awesome neuroMDs around, both those who take

> insurance and those who do not. I reminded everyone about the fact

> that if you figure out the billing to insurance that all considered

> Dr.Agin's fee, even the 3 hour exam alone (even without all the

> other time she spends on each patient) is equivalent to all the rest

> out there when you figure that a 30-40 minute exam is billed to

> insurance at $400 (that's 2000 to 2400 for just the 3 hours alone...

> even though some appear to miss that point and continue to say that

> $2000 is expensive but leave out the 3-4 hour part) I also said

> many times in the posts I answerd on this that perhaps all your child needs

> is a 30 minute exam with an awesome neuroMD. To me what separates

> Dr. Agin from other neuroMDs even outside the 3 hour exam is the

> fact that she was an SLP for 7 years before going to medical

> school. Others just don't have the insight she has in neuro

> medicine today in regards to speech impairments that were unfortunately left

out

> of the mix in schooling.

>

> We have children in this group, and outside this group who are

> falling through the cracks and who need more for advocacy reasons.

> For example Miche's example. Miche needs help from all of us...it's

> one of the worst cases I've ever heard in regards to a school

> system. How much is 2 thousand dollars in comparison to the

> nightmare situation she's in and how much is her attorney (the lame

> one) costing her?

>

> I did say that if it was my child, my sister's child, or best

> friend's child that I would recommend Dr. Agin as the " best " neuroMD

> to see. I stand by that -but that's just my opinion. Doesn't

> (again) mean there aren't others out there who aren't awesome. I

> myself took my boys to other neuroMDs outside of Dr. Agin. I

> always recommend seeing 'a' neuroMD when apraxia is suspected, and

> honestly -not everyone will be able to see Dr. Agin even if all

> wanted to. There's only so much time in the day and the week and I

> believe she only sees around 8 children a week. That's it.

>

> The following is a message about a parent who saw a neuroMD who is

> not awesome through her insurance and also saw Dr. Agin.

>

> Parents need to know what to expect. Say Chrisina 'only' went to

> the insurance neuroMD for example when you read the following.

>

> ~~~~~~~~start of archive

>

> From: " christinacorbo " <christinacorbo@y...>

> Date: Fri Jan 6, 2006 11:21 am

> Subject: Re: TWO THOUSAND DOLLAR?? christinacorbo

>

> We took my son (38 months old) to Dr. Agin Oct. 26,

> 2005. We

> live in NC, but made the trip up to NYC, and I must say it was

> TOTALLY worth every penny. had been getting speech

> therapy

> through EI since August 2004 and was not making any progress.

> From

> reading The Late Talker and other info in my own research, I

> suspected he had apraxia. EI thought ASD, but could not give

> any

> diagnosis. We got put on Dr. Agin's waiting list in May, but

> had no

> appointment date yet. We took him to a dev. ped. with our local

> children's hospital in June, spent about 30 minutes total with

> him

> and his developmental specialist, and he gave a diagnosis

> of " speech

> language delay/impairment " . No kidding doc, I could have told

> him

> that! He said in no way did he think he was on the austistic

> spectrum, that his lack of social skills and being withdrawn

> was

> probably from having problems with communication. He said wait

> 6

> months and bring him back again to see what progress he has

> made.

> That did not sit well w/me. Thank goodness Dr. Agin's office

> called

> me back in July and scheduled an appointment for October 26th.

> We

> were told to start him on fish oils, and we did. Over the next

> couple of months he made the most progress he had made up til

> then.

> He was making more attempts at verbalization, and we

> capitalized on

> that by constantly being in his face and trying to get him to

> try to

> use speech. During this time, though, it became clearer in my

> eyes

> that he did have apraxia. The more word apporoximations he had

> and

> the longer the length of the utterances he was attempting (2

> words)

> the harder it was for him and the more inconsistent they came

> out.

> But we were so excited that he was trying!

>

> We filled out the lengthy intake forms Dr. Agin's office had

> sent us

> and sent them back in September. They provided a very detailed

> history. At the appointment, we were there about 3 hours total.

> Dwyer, one of the SLPs Dr. Agin works with, took part in

> the

> exam as well. They both asked questions I had never even

> thought of

> and that no one else had asked before in any of his other

> evals. My

> husband and I both felt that we were definitely in the right

> place

> to find help for . You could just tell - this is an

> expert.

> She gave the diagnosis: PDD-NOS, Severe Verbal Apraxia, Mild

> Hypotonia. She explained in detail how she arrived at each

> diagnosis, and answered our questions in full detail. To make a

> long story short (I know, too late), she told us what her

> recommendations were, intensive therapies that we needed to

> get in

> order to " save " . When she used those words it really hit

> home, but also finally gave us hope. Finally someone was

> telling

> what we were dealing with and what we needed to do to " save "

> our

> son! She said she would not just leave us hanging since we

> lived

> out of state, and she hasn't. We got her 10-page report which

> included her recommendations in November: Speech therapy 3-5

> times

> per week, OT 2x per week, and ABA therapy. We had an IEP

> meeting in

> December, and I gave a copy of her report to all team members.

> Dr.

> Agin has also spoken by phone to the EC director with our

> schools

> about getting services for , and now they are agreeing to

> individual speech therapy 3x per week and group speech 2x per

> week.

> We are going to take the 3 individual and keep his 2 private

> per

> week. We are in the process of working out the OT as well. The

> school's developmental preschool program leaves a lot to be

> desired, I had him in there for a month but took him out - I

> don't

> need a babysitter. I have been communicating with Dr. Agin

> throughout all of this by email. We are getting a home ABA

> program

> started, and I emailed Dr. Agin just a few days ago with my

> concerns

> about ABA after seeing some posts on the subject on this list.

> So I

> know she is with us in getting the help he needs.

>

> All in all, I again want to say the $2000 was well worth it.

> Our

> insurance covered almost $300 of it. By the way, we went back

> to

> that other dev. ped., which our insurance did cover except for

> the

> copay, in November for his follow up. I was going to cancel,

> but

> mainly out of curiosity I wanted to see what he had to say. He

> noted that he had made progress with his speech, said keep up

> with

> whatever we've been doing, come back in another 6 months, and

> we

> were on our way in 25 minutes. I had planned on showing him Dr.

> Agin's report, but then I figured why even bother? If I just

> went

> along with his advice, wait 6 months then another 6 months, a

> whole

> year would go by and then what? Needless to say, we will not be

> wasting our time going back to him again. We know we are in

> good

> hands now with Dr. Agin.

>

> "

>

> ~~~~~~~~~~~~end of archive

>

> If one doesn't know the differences to look for prior to making the

> appointment, during the appointment and after how that appointment

> can help -they may take their child to a not so good neuroMD and

> then tell others here that SLPs and OTs are " just as good " so don't

> waste your money. That to me is far more of a dangerous turn.

>

> What this thread taught is that there are differences and what to

> look for -and that there are awesome neuroMDs out there for apraxia

> other than Dr. Marilyn Agin who may be best for that child or that

> situation.

>

> =====

>

January 8, 2006

,

I am the first person to say Dr. Agin is a great developmental ped and

was truly a God-send when we were going through this with my son. She

was so on target with his issues and showed us incredible support and

compassion at a time when we really needed it. She e-mailed me, spoke

with his private therapists and wrote wonderful detailed reports with

recommendations that certainly could not be argued. The school

wouldn't dare argue with her. I always tell parents when they contact

me in NJ that if they can get in to see her she is worth seeing for

their kids. She guided us through a very scary time which I am forever

grateful for.

That aside, the thread took a dangerous turn. I feel that it is a

parent's choice to spend the money whether they have it, don't have

it, have to borrow it or whatever. It doesn't make them less of an

advocate for their child if they choose to spend the money on therapy

or a car payment for that matter to make sure they can get to therapy.

We all have to make decisions whether it is to get extra therapy,

listening programs or whatever that is often not covered by insurance.

I only commented that we should end the thread because you or anyone

else is not going to change someone's mind about what is beneficial

for their child. I felt like you were making parents feel guilty by

not seeing Dr. Agin. That isn't fair.

I don't forget the helplessness I felt when my son was 3 and it was

lists like this one that helped me through it and how I found Dr.

Agin. As a listowner I am surprised that you let the negativety

continue until it was beat into the ground. We all got your point.

Nothing was gained here if anything you aided to the " attack " by

continuing to harp on it.

The parent's here are looking for support not confusion as to whether

they are doing the right thing for their children.

Again, I am a big fan of Dr. Agin and my family and I owe her alot in

regards to where my son was and where he is today.

Mom to 7 1/2

>

> it's hard for me to drop it when I feel someone I respect who

> has done more for verbal apraxia in raising awareness to the medical

> community in a few years than anyone else has done in a century has

> been attacked. And it's shocking to me that people just don't 'get

> it' that it's time -not money that is the difference.

January 8, 2006

I didn't catch that dangerous turn. From what I gather we all agree

there are other awesome neuroMDs around, both those who take

insurance and those who do not. I reminded everyone about the fact

that if you figure out the billing to insurance that all considered

Dr.Agin's fee, even the 3 hour exam alone (even without all the

other time she spends on each patient) is equivalent to all the rest

out there when you figure that a 30-40 minute exam is billed to

insurance at $400 (that's 2000 to 2400 for just the 3 hours alone...

even though some appear to miss that point and continue to say that

$2000 is expensive but leave out the 3-4 hour part) I also said

many times in the posts I answerd on this that perhaps all your child needs

is a 30 minute exam with an awesome neuroMD. To me what separates

Dr. Agin from other neuroMDs even outside the 3 hour exam is the

fact that she was an SLP for 7 years before going to medical

school. Others just don't have the insight she has in neuro

medicine today in regards to speech impairments that were unfortunately left out

of the mix in schooling.

We have children in this group, and outside this group who are

falling through the cracks and who need more for advocacy reasons.

For example Miche's example. Miche needs help from all of us...it's

one of the worst cases I've ever heard in regards to a school

system. How much is 2 thousand dollars in comparison to the

nightmare situation she's in and how much is her attorney (the lame

one) costing her?

I did say that if it was my child, my sister's child, or best

friend's child that I would recommend Dr. Agin as the " best " neuroMD

to see. I stand by that -but that's just my opinion. Doesn't

(again) mean there aren't others out there who aren't awesome. I

myself took my boys to other neuroMDs outside of Dr. Agin. I

always recommend seeing 'a' neuroMD when apraxia is suspected, and

honestly -not everyone will be able to see Dr. Agin even if all

wanted to. There's only so much time in the day and the week and I

believe she only sees around 8 children a week. That's it.

The following is a message about a parent who saw a neuroMD who is

not awesome through her insurance and also saw Dr. Agin.

Parents need to know what to expect. Say Chrisina 'only' went to

the insurance neuroMD for example when you read the following.

~~~~~~~~start of archive

From: " christinacorbo " <christinacorbo@...>

Date: Fri Jan 6, 2006 11:21 am

Subject: Re: TWO THOUSAND DOLLAR?? christinacorbo

We took my son (38 months old) to Dr. Agin Oct. 26,

2005. We

live in NC, but made the trip up to NYC, and I must say it was

TOTALLY worth every penny. had been getting speech

therapy

through EI since August 2004 and was not making any progress.

From

reading The Late Talker and other info in my own research, I

suspected he had apraxia. EI thought ASD, but could not give

any

diagnosis. We got put on Dr. Agin's waiting list in May, but

had no

appointment date yet. We took him to a dev. ped. with our local

children's hospital in June, spent about 30 minutes total with

him

and his developmental specialist, and he gave a diagnosis

of " speech

language delay/impairment " . No kidding doc, I could have told

him

that! He said in no way did he think he was on the austistic

spectrum, that his lack of social skills and being withdrawn

was

probably from having problems with communication. He said wait

6

months and bring him back again to see what progress he has

made.

That did not sit well w/me. Thank goodness Dr. Agin's office

called

me back in July and scheduled an appointment for October 26th.

We

were told to start him on fish oils, and we did. Over the next

couple of months he made the most progress he had made up til

then.

He was making more attempts at verbalization, and we

capitalized on

that by constantly being in his face and trying to get him to

try to

use speech. During this time, though, it became clearer in my

eyes

that he did have apraxia. The more word apporoximations he had

and

the longer the length of the utterances he was attempting (2

words)

the harder it was for him and the more inconsistent they came

out.

But we were so excited that he was trying!

We filled out the lengthy intake forms Dr. Agin's office had

sent us

and sent them back in September. They provided a very detailed

history. At the appointment, we were there about 3 hours total.

Dwyer, one of the SLPs Dr. Agin works with, took part in

the

exam as well. They both asked questions I had never even

thought of

and that no one else had asked before in any of his other

evals. My

husband and I both felt that we were definitely in the right

place

to find help for . You could just tell - this is an

expert.

She gave the diagnosis: PDD-NOS, Severe Verbal Apraxia, Mild

Hypotonia. She explained in detail how she arrived at each

diagnosis, and answered our questions in full detail. To make a

long story short (I know, too late), she told us what her

recommendations were, intensive therapies that we needed to

get in

order to " save " . When she used those words it really hit

home, but also finally gave us hope. Finally someone was

telling

what we were dealing with and what we needed to do to " save "

our

son! She said she would not just leave us hanging since we

lived

out of state, and she hasn't. We got her 10-page report which

included her recommendations in November: Speech therapy 3-5

times

per week, OT 2x per week, and ABA therapy. We had an IEP

meeting in

December, and I gave a copy of her report to all team members.

Dr.

Agin has also spoken by phone to the EC director with our

schools

about getting services for , and now they are agreeing to

individual speech therapy 3x per week and group speech 2x per

week.

We are going to take the 3 individual and keep his 2 private

per

week. We are in the process of working out the OT as well. The

school's developmental preschool program leaves a lot to be

desired, I had him in there for a month but took him out - I

don't

need a babysitter. I have been communicating with Dr. Agin

throughout all of this by email. We are getting a home ABA

program

started, and I emailed Dr. Agin just a few days ago with my

concerns

about ABA after seeing some posts on the subject on this list.

So I

know she is with us in getting the help he needs.

All in all, I again want to say the $2000 was well worth it.

Our

insurance covered almost $300 of it. By the way, we went back

to

that other dev. ped., which our insurance did cover except for

the

copay, in November for his follow up. I was going to cancel,

but

mainly out of curiosity I wanted to see what he had to say. He

noted that he had made progress with his speech, said keep up

with

whatever we've been doing, come back in another 6 months, and

we

were on our way in 25 minutes. I had planned on showing him Dr.

Agin's report, but then I figured why even bother? If I just

went

along with his advice, wait 6 months then another 6 months, a

whole

year would go by and then what? Needless to say, we will not be

wasting our time going back to him again. We know we are in

good

hands now with Dr. Agin.

"

~~~~~~~~~~~~end of archive

If one doesn't know the differences to look for prior to making the

appointment, during the appointment and after how that appointment

can help -they may take their child to a not so good neuroMD and

then tell others here that SLPs and OTs are " just as good " so don't

waste your money. That to me is far more of a dangerous turn.

What this thread taught is that there are differences and what to

look for -and that there are awesome neuroMDs out there for apraxia

other than Dr. Marilyn Agin who may be best for that child or that

situation.

=====

January 8, 2006

Actually, I gained quite a bit by calling me to the carpet for my

words. I honestly didn't even realize " what " I had posted. It was

only after reading her post and sensing her words were directed to me,

did I go back and read my written word. While I still have a hard time

swallowing a $2,000 fee, I thought long and hard this weekend and

realized that she is a world-renownded specialist who also lives in one

of the most-expensive areas of the country (so, $2,000 there is

probably about $1,000 here).

It is actually 's passion for Dr. Agin that makes me feel like I

just have to see her. Not because is pressuring me, but I can't

help but thinking that she sees so many " specialists " in her work with

her foundation, yet she still holds Dr. Agin in such high regard.

Assuming Dr. Agin hasn't already cancelled my appointment based on my

comments here (and truly, I wouldn't fault her for that) I am going to

go to the appointment I have scheduled at the end of this month. Trust

me, walking into a meeting with a woman that I accused of running a

racket is going to be one of the hardest things I will have done in a

very long time (shows you what I wouldn't do for my daughter!!). Maybe

I will walk away feeling like I didn't gain much from our office visit

and that I should have spent the $2,000 on more therapy. But, if there

is even a 1% chance that Dr. Agin can set me on a road to really

improve Amber's life, I have to go for it. Being the anal CPA that I

am, I have sat for the last day devising a budget to cover the fee. I

honestly realized how much crap we spend money on without even

realizing it (my 2 coffees that I buy out each day comes out to

approximately $832 a year, or nearly half of her fee if I made my

coffee at home!!). I certainly think the chance of improving Amber's

life is worth me giving up my Dunkin Donut's coffee (although I REALLY

like their coffee!!LOL)!!

So, please don't hold anything against . If nothing else, I gained

tremendous respect for (she was so gracious to me after I

apologized) and have renewed hope that I can get some answers in my

quest for helping Amber. If it wasn't for 's passion, I honestly

think I would have cancelled my appointment.

Tina and Amber

January 9, 2006

hi- there are some organizations in the back of the late talker book like the

united way that may have speech therapy based on a sliding scale according to

your income. That is how we got private speech therapy. we have asupport

group here in iowa we belong to called family fun night and our next meeting is

thursday the 19th at 6 pm at olmstead elementary in urbundale, we will have a

slp at the meeting, my son is gong to take part in a eating class his ot has

started once a week now , i tried pro efa but after the 1st few tries he quit

eating altogether so we stopped but i know it has helped alot of kids. what kind

of services is amber getting? what progress has been made? CHARLOTTE

January 9, 2006

Amber gets the following therapies

ST, 2x week at school (one in a group setting to work on socialization

and one session that is one-on-one)

ST, 2x week private

OT, 2x week at school, one-on-one

PT, 2x week private (PT is also working on sensory issues and I would

swear she could be an OT, too!!)

PT, 1x week school

It's hard for me to say how much progress she has made. She has

certainly made progress since starting therapy three years ago (she

started PT at 6 months of age but couldn't get into speech therapy

until 18 months). She was pretty much nonverbal 3 years ago. Today

she will say things like " nanny poppy me " . That means " I want to go to

nanny and poppy's " . " pin gu two poss " means " pink gum two

pieces " . " Abber pa-u peas " means " Amber up please (mommy, pick me up).

She is definitely talking lots more but I just can't be sure that we

are working on the correct things. In my opinion, we should be

focusing on a few sounds until she masters them, add a few more (while

continuing to work on the old) and so on and so on. Well, our SLP

seems to jump all over the place and I think it is makign it harder on

Amber. I work with her as much as I can at hoome and I concentrate on

certain sounds but she can't make alot of them so her words come out as

approximations. She tries so hard but she just can't get her mouth in

the right position. I really think the prompt technique would work

well but our SLP isn't trained in it (and as I have mentioned, there

are very few SLP's around). I absolutely adore our SLP and I think

that is why I have hesitated finding a new one (well, that and the fact

that I can't find an appropriate substitute), but I certainly can't

stand in the way of Amber's progress just because I like our SLP,

kwim.

It isn't even the cost of the therapy, it is the fact that I can't find

a trained therapist. Very frustrating. I have considered going back

to schoolto become an SLP, but I wouldn't be able to work, which means

I wouldn't be able to afford to cover things that Amber needs now

(that, and another 4 years of college sounds less than appealing right

now!!).

It is all very frustrating, to say the least.

January 10, 2006

hi again tina- are there any speech programs in your area that will cut you

some slack ? we were able to get speech based on our income sponsored by united

way when we started taking our son to speech therapy privately? There are

alot of resources in the back of the late talker book. Have you read it. It was

13 bucks here at barnes and nobles. We have a support here in iowa called

family fun night thursday the nineteenth at 6 pm at olmstead elementary school

in

urbundale. We are going to have an slp there. charlotte henry

January 11, 2006

Hi Charlotte,

Wow, it sounds like your son and Amber are rather similar. She was

tested by a psychiatrist a little over a year ago. We needed to

obtain funding for a therapeutic support staff because Amber was

having serious behavioral issues at school. He diagnosed her with

PDD-NOS along with mental retardation, severity unknown. The killer

is, he never did a formal evaulation on her!! At first I was

devestated at the words " MR " but having the PDD-NOS diagnosis allowed

us to get a TSS for her at school. WE are set to have a formal

cognitive test done in April with our neurodevelopmental ped (he

brings in a psychologist to do the testing), but I am assumign that

the test won't be geared towards kids with severe expressive speech

delays so I think I am going to cancel it. We have our appointment

with Dr. Agin in May and I am guessing that she would do some sort of

cognitive assessment and her results are sure to be more accurate,

given Amber's apraxia. I do know that she is overall delayed

(cognition included) and numbers don't really matter (yet they sting

just the same when I get them!!), but I just need to know, if

possible, what her potential is. This will help me plan for her

future (I am thinking of setting up a special needs trust for her).

I do sit in on with both of her private therapies (ST 2x and OT 1x

(soon to be increased to 2x a week). We have homework everynight

that we do (drill cards, reading books and picking out body parts,

oral exercises, brushing, and a host of other things) and on days

when she doesn't have speech therapy, I do her drills with her at

least 2x. But, I am just not sure that our SLP has enough training

dealing with apraxia and how to properly treat (I talked to her

yesterday about Dr. Agin and how we were going to see her. In our

conversation she basically told me that she is a generalist and

treats all kinds of speech issues and doesn't specialize (which means

no specialized training)).

I am not saying that I don't think our SLP is good (she is loving and

compassionate and others speak very highly of her), I am just afraid

that we are missing something. If Amber just had a straight out

delay, versus apraxia, I wouldn't think twice about her techniques.

Part of it is that Amber is still so delayed with her expressive

speech, that I can't help wonder if it is the lack of appropriate

therapy. However, it could be that our SLP is doing everything right

but Amber's apraxia is so severe that our progress is just always

going to be painfully slow. But, I need to get a second opinion

on " what " we are doing to be sure.

I don't know if any of my ramblings make any sense (I haven't had my

second cup of coffee yet!!), but I just need to know that I am doing

all that I can for her. Ultimately, we might not be able to overcome

her apraxia (she will be 5 in July and I would peg her expressive

speech at about a 2 1/2 year old level) and I will accept that, but

not without a fight!!

Thanks again for all of your great tips and advice. I just wished I

lived in or near a bigger city with access to a larger selection of

services.

Tina and Amber

January 11, 2006

I bought The Late Talker about two years ago and agree, great resources

in there. With us, it isn't the cost of the therapy (her speech

therapy is covered by our state insurance (we will be paying a monthly

premium for it soon based on income-OT is paid out of pocket), it is

the fact that I can't find anyone that specializes in apraxia. I have

a hard time believing that there aren't enough kids in our area with

apraxia to support a specialist. I know our two SLP's treat other kids

with apraxia, but I know our private SLP doesn't really have any

training (not sure about the school SLP). That's what is frustrating

me.

January 11, 2006

hi tina,

I just responded to your ADHD post and our kids sound alike specially MR

thing. I won;t believe that, I still won't give up on him that way.

you are doing all you can for her and take from me I went through some very

rough times very recently with feeling like I'm not doing all I can. its part

of the apraxia for progress to be slow. its hard to patient and think your doing

things wrong or not enough. you are

chris

tinamaried2003 <tdudek@...> wrote: