Neurodevelopmental Pediatrician Appointment/IFSP Planning

[Guest guest]

So...

we're finally going to be seeing a neurodevelopmental pediatrician.

Still no " official " diagnosis of apraxia, and our EI folks and the two

speech therapists Jack was evaluated by didn't diagnose anything other

than an expressive speech delay. (Although EI doesn't diagnose, they

didn't seem to be nearing any idea of what was going on either.)

Frustrating for me at this point. The first one we saw recommended

bringing him back in 3 months to be evaluated again, not even

recommending any speech therapy. The second one recommended once a

month.

So with all the " experts " wavering on me, I was, and still am, unsure

of what's going on with Jack. The more I read about apraxia the more

it fits, but I'm trying not to fall into the trap of watching for

symptoms that fit the diagnosis rather than the other way around. It

would seem that our EI people are beginning to think of it as well.

They finally added another speech therapy appointment so now we get it

twice a month. (And our case worker once a week)

I still think he may have a mild case of hypotonia, which no one seems

to observe. He's approaching 3 but still looks to me to have that

baby fat/toddler look, the rounded tummy, cheeks, and chubby legs.

Thinning out a bit, but...

He's just learned to blow bubbles, and can only do it inconsistently.

But a big milestone around here! A few sounds, as one of our EI

peopel gave us the Kaufman cards and I sort of amended the system as

he didn't take to well to a flashcard thing - but providing

approximations for him based on his sounds is working on few things.

Says " wawa " now for water, " buh-buh " for bubbles. Mama still sounds

like baba. A couple animal sounds - moo, rara(lion), aaah(sheep),

oo-oo (monkey.) That's pretty much it. SLOW progress. But progress

nonetheless.

I've taken him off the oils and vitamins. He's been off for a couple

months now. I want to get him through these nine million evaluations

with them seeing him as is so we can get to some determination of

what's going on. Still wondering whether I shouldn't have done that

or not.

So, now that I've rambled, back to my original reason for writing

this. We're going to be seeing the neurodevelopmental pediatrician.

I worry always with these things that he is a different self in these

evaluations. Very quiet (more so than usual), shy. Usually not a

sound, which of course they should hear. I'm thinking of possibly

videotaping him at home and taking it in so they can see the types of

sounds he makes and how they're made. I guess my question is what

suggestions do you have for this appointment, questions I should be

asking, things I should be sure to tell them, etc?

And to tack on a random question, we're updating Jack's IFSP this

week. Originally it was just to add the second speech therapy a

month, but now that I think about it I think I'd like to amend our

original goals to something more specific that more carefully

considers what we know about his speech now, rather than what we were

thinking months ago. So suggestions on that? What were some of your

goals for nonverbal apraxic children?

Sorry for the long note.

[Guest guest]

Hi ,

I saw your message as a new member in October of 2007 when your son

was 22 months old and at that point you were starting the fish oil

therapy...so he was on them for how many months prior to you stopping

them? As you may know from the archives once an apraxic child is on

the oil therapy they no longer present the same -and while those that

respond will regress when off in most cases -or stop progressing so

rapidly -they don't go back to zero.

Is the neurodevelopmental pediatrician you are going to see

knowledgeable about apraxia as well as the oil therapy? I found

it's mainly the better hospitals -better MDs that are in general.

You probably know this as a preschool teacher that what you are

looking for now are services for his IEP as well as the diagnosis.

So you need to know from a neuroMD if there is motor planning aspects

in other areas of his body, mild low tone or sensory issues as well

as knowing if it's a speech delay or speech disorder. You probably

read all of the following but let me know other than body shape if

you notice any of the signs from the following pages

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

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

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

The word " inconsistently " stands out to me in your email as of course

that's a classic flag of apraxia. It's not all about speech either

because if it is apraxia it can affect breath control as well.

It's clear you are on the right path -the beginning is tough until

you find the right professionals to help - but it does get way easier

after that. So the job for you right now is to find that " hero "

professional who can help diagnosis your child so he can receive

appropriate therapies through the IEP and private. You've read The

Late Talker book right?

As far as things you can do to prepare for the MD exam -here's an

archive

Re: Neurologist Visit QUestions...HELP!

Thanks for a great answer. It probably depends as well on

where you live and what type of neuroMDs are around you. For

example Dr. Abba Cargan in both NYC and NJ is a pediatric neurologist

and Dr. Marilyn Agin in NYC is a neurodevelopmental pediatrician. I

know

at this point quite a few highly educated and knowledgeable parents

who have taken their " just apraxic " child to one or the other who

are extremely happy. I also know that there are some in other areas

of the country that have taken their child to one developmental

pediatrician and were not at all happy, but found another to be the

answer to their child. For my children they were taken to both

neurologists and developmental pediatricians. In fact

their " pediatrician " when they were young was through the Children's

Specialized Hospital and was a " special needs pediatrician " was Dr.

Gozo, whom is also a pediatric neurologist! And as many of you

that have read The Late Talker book know Dr. Agin was one of my boys

neurodevelopmental pediatricians. And from this group you know how

pediatric neurologist Dr. Trevor De Souza made an impact in both of

my boy's lives. Again ...it depends. I found documented brain injury

or suspected brain injury... or not, and I have all of the above

including documented, suspected 'and' " or not " in my two boys.

Again it depends on whom you see in a " neuroMD " , and why.

Outside of those gems of neuroMDs that have a track record of success

in this group as the two I mentioned above (and again one a

pediatric neurologist and one a neurodevelopmental pediatrician) it

depends on where you live and whom you take your child to see. This

is why I say to seek recommendations here from other parents, and if

you have to drive for hours or even fly if financially possible to

seek out appropriate evaluations if there are none around you. (no

matter what type of neuroMD just happens to be down the street)

it's worth it in both the short and long runs.

Again, some do see more than one type of neuroMD, in fact in this

group quite a few have. I used neuroMD exams to advocate for my son

Tanner back in the day (6 years ago) when the school tried to shove

my child into the wrong box, or punish him using behavior approaches

for skills that were impaired due to motor planning issues. Below

is an archive with a short message on top from Dr. Agin on the whole

neurodevelopmental pediatrician vs neurologist question. Again it

probably depends on who is around you that is respected,

knowledgeable -and whom can help!

~~~~~~~~~~~~~start of archive message: top from Dr. Agin when I ask

her if I'm right when I say " neuroMD " instead of writing it all

out!

Hi ,

Just wanted to clarify these titles as you presented them in your

post. I agree with you that NeuroMD is a good 'short cut' term to

designate a neurodevelopmental pediatrician who may be a neurologist

or developmental ped. About 5 years ago, the American Board of

Pediatrics http://abp.org/ developed a specialty that confers a

certificate after passing exam (similar to Board certification in

any specialty of medicine) and then needs to sit for follow-up exams

~every 10 years. Both peds neurologists and dev ped may be eligible

if they have done the necessary requirements which are found on the

abp website. This specialty is relatively new so maybe there are

just a 200-300 of us in the country. Here is an excerpt from the abp

website.

Eligibility Criteria for Certification in

Neurodevelopmental Disabilities

The ABP, in collaboration with the American Board of Psychiatry and

Neurology (ABPN), offers a certificate of added qualifications in

neurodevelopmental disabilities. This document provides the

requirements of the ABP. (Note: A candidate who has a primary

certificate from ABPN should contact the ABPN regarding its

eligibility criteria.).

It should be noted that these criteria and conditions are subject to

change without notice. All applicants are advised to contact the

American Board of Pediatrics to ascertain whether the information

they have is current.

ADMISSION REQUIREMENTS

Certification by the American Board of Pediatrics (ABP)

An applicant must be currently certified in general pediatrics to be

eligible to apply for a pediatric subspecialty certifying

examination. Applicants whose time-limited certification will expire

before the examination must complete the requirements for

maintenance of certification at least 5 months before the

examination date. Once training in an accredited neurodevelopmental

disabilities program is required, the applicant must be currently

certified by both the ABP, in general pediatrics, and the ABPN, in

neurology with special qualifications in child neurology. After the

2007 examination, all applicants must apply through ABPN.

Marilyn C. Agin, MD, FAAP

Neurodevelopmental Pediatrician

79 Laight St. #1A

New York, NY 10013

212-274-9180 (phone)

212-219-3688 (fax)

email: mamadoc111@...

On Jan 31, 2006, at 6:54 AM,

[Guest guest]

I have a lot of the same questions you do! Do you take them off

oils, or leave them on? My son has his appt. coming up in a couple

of months and he's only been on the oils for a few weeks. We've

already seen great progress and it would break my heart to regress

AGAIN! So, my vote on that is to keep him moving forward IF the oils

were successful for him.

As far as goals, we have a specific number of spontaneous vc, cv,

cvcv words or aapproximations used to get his needs met or for

communication purposes. I.e. not just labeling things (which is

great!) but we want him to use his language, which consists of mostly

unintelligible approximations to be understood by others. We continue

to reinforce ALL his words, but that is not our goal in therapy. We

are trying to make his inconsistent errors consistent approximations

so that we can have a way to tell others what he is trying to say

(example...we can tell school that " nnn-o " is really 'one' and " n-

ooooo' is 'no'). We want him to be able to communicate with us and

others without visual or contextual cues.

As far as frequency, we stared out 2X a month, went to 1X a week,

then 2X a week, switched therapists to one with experience with

apraxia and she can only do 60 mins one time a week. We pretty much

do ALL his therapy with him outside of EI time. Honestly, the way we

suspected apraxia was utilizing traditional speech therapy with no

success for 7mos, and only saw minute progress when we increased

frequency. If they don't think your son has apraxia, why the Kaufman

cards, why the increase in treatment? Try to get this clarified so

that you can set SMART goals (specific, measurable, attainable,

reasonable (OK I forgot what the R stands for) and time sensitive.

The important thing being they have to have a goal that is measurable

and has a time limit for evaluation, which should be reviewed every 3

months, not 6. If he doesn't meet his goal in 3 months, they have to

change his therapy.

HTH!

>

> So...

> we're finally going to be seeing a neurodevelopmental pediatrician.

> Still no " official " diagnosis of apraxia, and our EI folks and the

two

> speech therapists Jack was evaluated by didn't diagnose anything

other

> than an expressive speech delay. (Although EI doesn't diagnose, they

> didn't seem to be nearing any idea of what was going on either.)

> Frustrating for me at this point. The first one we saw recommended

> bringing him back in 3 months to be evaluated again, not even

> recommending any speech therapy. The second one recommended once a

> month.

>

> So with all the " experts " wavering on me, I was, and still am,

unsure

> of what's going on with Jack. The more I read about apraxia the

more

> it fits, but I'm trying not to fall into the trap of watching for

> symptoms that fit the diagnosis rather than the other way around.

It

> would seem that our EI people are beginning to think of it as well.

> They finally added another speech therapy appointment so now we get

it

> twice a month. (And our case worker once a week)

>

> I still think he may have a mild case of hypotonia, which no one

seems

> to observe. He's approaching 3 but still looks to me to have that

> baby fat/toddler look, the rounded tummy, cheeks, and chubby legs.

> Thinning out a bit, but...

>

> He's just learned to blow bubbles, and can only do it

inconsistently.

> But a big milestone around here! A few sounds, as one of our EI

> peopel gave us the Kaufman cards and I sort of amended the system as

> he didn't take to well to a flashcard thing - but providing

> approximations for him based on his sounds is working on few

things.

> Says " wawa " now for water, " buh-buh " for bubbles. Mama still sounds

> like baba. A couple animal sounds - moo, rara(lion), aaah(sheep),

> oo-oo (monkey.) That's pretty much it. SLOW progress. But progress

> nonetheless.

>

> I've taken him off the oils and vitamins. He's been off for a

couple

> months now. I want to get him through these nine million

evaluations

> with them seeing him as is so we can get to some determination of

> what's going on. Still wondering whether I shouldn't have done that

> or not.

>

> So, now that I've rambled, back to my original reason for writing

> this. We're going to be seeing the neurodevelopmental

pediatrician.

> I worry always with these things that he is a different self in

these

> evaluations. Very quiet (more so than usual), shy. Usually not a

> sound, which of course they should hear. I'm thinking of possibly

> videotaping him at home and taking it in so they can see the types

of

> sounds he makes and how they're made. I guess my question is what

> suggestions do you have for this appointment, questions I should be

> asking, things I should be sure to tell them, etc?

>

> And to tack on a random question, we're updating Jack's IFSP this

> week. Originally it was just to add the second speech therapy a

> month, but now that I think about it I think I'd like to amend our

> original goals to something more specific that more carefully

> considers what we know about his speech now, rather than what we

were

> thinking months ago. So suggestions on that? What were some of

your

> goals for nonverbal apraxic children?

>

> Sorry for the long note.

>

[Guest guest]

Thank you so much for the detailed response. And I can't believe it

was all the way back at 22 months I started thinking about this.

Makes me wish I would have listened to myself more rather than the

" experts. " (Not that they don't know alot, but I guess we should

never forget that we do too!)

Jack didn't start on the fish oils then, after the evaluation when

they didn't seem to think apraxia, I waited. And he's now been off

them for a couple months. I read, somewhere (our archives? late

talker? I think maybe in one of those links?) that it's better to have

them evaluated without being on the supplements. And we've been going

through evaluation after evaluation so...

Well, I'm hoping this ND Pediatrician will get us where we need to go.

I honestly couldn't believe one of the SLPs believe he didn't need

any speech therapy. I'm calling them on Tuesday to ask some

additional questions about their experience with apraxia and whatnot.

I have read the Late Talker, and I actually picked it up to reread

again a few days ago.

Jack does display some of the other " soft " signs - hypotonia, in

addition to the body shape, the " solid " feel, tires, etc. In reading

about it, I actually think that myself and my 3 siblings may have had

undiagnosed mild cases of it in childhood. He also demonstrates some

sensory seeking behaviors and low registration. This is one I'm

really just starting to understand, because he seems sort of all over

the place on this: gets upset if the banana or cookie isn't " whole " ,

and certain noises seem to bother him (there's this one toy horse that

sings that makes him cry!); but yet most of his behaviors seem to be

seeking rather than avoiding: jumping, crashing, hitting (himself and

others), head banging during tantrums. The other day I realized the

bath water was too hot but he didn't seem to care or notice. And then

other times he gets incredibly upset about something I'm not quite

sure what the cause of is. So I'm ordering The Out Of Sync Child and

will be discussing these things with my EI person this week. Sorting

through all of that is a bit of a maze at this point.

Our EI people seemed to think he also has some motor planning issues

in his limbs as well.

In any event, the part of your reply that struck me the most was the

bit about finding our " hero. " That's exactly what I needed to hear,

and exactly where we are right now. It's frustrating to me, in part

because it's frustrating to Jack, to go through so many experts

without any real information coming of them. But! We're still looking!

Thanks again.

>

> Hi ,

>

> I saw your message as a new member in October of 2007 when your son

> was 22 months old and at that point you were starting the fish oil

> therapy...so he was on them for how many months prior to you stopping

> them? As you may know from the archives once an apraxic child is on

> the oil therapy they no longer present the same -and while those that

> respond will regress when off in most cases -or stop progressing so

> rapidly -they don't go back to zero.

>

> Is the neurodevelopmental pediatrician you are going to see

> knowledgeable about apraxia as well as the oil therapy? I found

> it's mainly the better hospitals -better MDs that are in general.

>

> You probably know this as a preschool teacher that what you are

> looking for now are services for his IEP as well as the diagnosis.

> So you need to know from a neuroMD if there is motor planning aspects

> in other areas of his body, mild low tone or sensory issues as well

> as knowing if it's a speech delay or speech disorder. You probably

> read all of the following but let me know other than body shape if

> you notice any of the signs from the following pages

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

> http://www.cherab.org/information/speechlanguage/verbalapraxia.html

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

>

> The word " inconsistently " stands out to me in your email as of course

> that's a classic flag of apraxia. It's not all about speech either

> because if it is apraxia it can affect breath control as well.

>

> It's clear you are on the right path -the beginning is tough until

> you find the right professionals to help - but it does get way easier

> after that. So the job for you right now is to find that " hero "

> professional who can help diagnosis your child so he can receive

> appropriate therapies through the IEP and private. You've read The

> Late Talker book right?

>

> As far as things you can do to prepare for the MD exam -here's an

> archive

>

> Re: Neurologist Visit QUestions...HELP!

>

>

> Thanks for a great answer. It probably depends as well on

> where you live and what type of neuroMDs are around you. For

> example Dr. Abba Cargan in both NYC and NJ is a pediatric neurologist

> and Dr. Marilyn Agin in NYC is a neurodevelopmental pediatrician. I

> know

> at this point quite a few highly educated and knowledgeable parents

> who have taken their " just apraxic " child to one or the other who

> are extremely happy. I also know that there are some in other areas

> of the country that have taken their child to one developmental

> pediatrician and were not at all happy, but found another to be the

> answer to their child. For my children they were taken to both

> neurologists and developmental pediatricians. In fact

> their " pediatrician " when they were young was through the Children's

> Specialized Hospital and was a " special needs pediatrician " was Dr.

> Gozo, whom is also a pediatric neurologist! And as many of you

> that have read The Late Talker book know Dr. Agin was one of my boys

> neurodevelopmental pediatricians. And from this group you know how

> pediatric neurologist Dr. Trevor De Souza made an impact in both of

> my boy's lives. Again ...it depends. I found documented brain injury

> or suspected brain injury... or not, and I have all of the above

> including documented, suspected 'and' " or not " in my two boys.

> Again it depends on whom you see in a " neuroMD " , and why.

>

> Outside of those gems of neuroMDs that have a track record of success

> in this group as the two I mentioned above (and again one a

> pediatric neurologist and one a neurodevelopmental pediatrician) it

> depends on where you live and whom you take your child to see. This

> is why I say to seek recommendations here from other parents, and if

> you have to drive for hours or even fly if financially possible to

> seek out appropriate evaluations if there are none around you. (no

> matter what type of neuroMD just happens to be down the street)

> it's worth it in both the short and long runs.

>

> Again, some do see more than one type of neuroMD, in fact in this

> group quite a few have. I used neuroMD exams to advocate for my son

> Tanner back in the day (6 years ago) when the school tried to shove

> my child into the wrong box, or punish him using behavior approaches

> for skills that were impaired due to motor planning issues. Below

> is an archive with a short message on top from Dr. Agin on the whole

> neurodevelopmental pediatrician vs neurologist question. Again it

> probably depends on who is around you that is respected,

> knowledgeable -and whom can help!

>

> ~~~~~~~~~~~~~start of archive message: top from Dr. Agin when I ask

> her if I'm right when I say " neuroMD " instead of writing it all

> out!

>

> Hi ,

> Just wanted to clarify these titles as you presented them in your

> post. I agree with you that NeuroMD is a good 'short cut' term to

> designate a neurodevelopmental pediatrician who may be a neurologist

> or developmental ped. About 5 years ago, the American Board of

> Pediatrics http://abp.org/ developed a specialty that confers a

> certificate after passing exam (similar to Board certification in

> any specialty of medicine) and then needs to sit for follow-up exams

> ~every 10 years. Both peds neurologists and dev ped may be eligible

> if they have done the necessary requirements which are found on the

> abp website. This specialty is relatively new so maybe there are

> just a 200-300 of us in the country. Here is an excerpt from the abp

> website.

>

> Eligibility Criteria for Certification in

>

>

> Neurodevelopmental Disabilities

>

> The ABP, in collaboration with the American Board of Psychiatry and

> Neurology (ABPN), offers a certificate of added qualifications in

> neurodevelopmental disabilities. This document provides the

> requirements of the ABP. (Note: A candidate who has a primary

> certificate from ABPN should contact the ABPN regarding its

> eligibility criteria.).

>

> It should be noted that these criteria and conditions are subject to

> change without notice. All applicants are advised to contact the

> American Board of Pediatrics to ascertain whether the information

> they have is current.

>

> ADMISSION REQUIREMENTS

> Certification by the American Board of Pediatrics (ABP)

>

> An applicant must be currently certified in general pediatrics to be

> eligible to apply for a pediatric subspecialty certifying

> examination. Applicants whose time-limited certification will expire

> before the examination must complete the requirements for

> maintenance of certification at least 5 months before the

> examination date. Once training in an accredited neurodevelopmental

> disabilities program is required, the applicant must be currently

> certified by both the ABP, in general pediatrics, and the ABPN, in

> neurology with special qualifications in child neurology. After the

> 2007 examination, all applicants must apply through ABPN.

>

>

> Marilyn C. Agin, MD, FAAP

> Neurodevelopmental Pediatrician

> 79 Laight St. #1A

> New York, NY 10013

> 212-274-9180 (phone)

> 212-219-3688 (fax)

> email: mamadoc111@...

>

>

>

> On Jan 31, 2006, at 6:54 AM,