Re: Who to See (Specialists, Therapists)

[Guest guest]

Hi ,

I could go on all day on this topic. We've seen a lot of specialists

for this and that, and I usually get just one useful tidbit. So

before I go on, I just want to suggest that you not get your hopes up

for " The Answer " from any of them. Each one will have information on

one sliver of your child's development. You will ultimately be the

one that has to piece it together.

Developmental Pediatrician: I definitely recommend that you see one,

because they will approach the delay from a medical point of view.

Unlike some people, I do not advocate spending a lot of money on this

one unless your child has a really confusing problem and you just

can't get answers unless you go to someone " big " . I have found that

most of the information they use they obtain by talking to you,

rather than the child. So if you are not knowledgeable or observant

enough to point out all the important stuff, they are not going to

know about it. And if you are knowledgeable and observant, you

probably have already figured out what to do next. They do usually

give you a nice report that sums up your child, which can be useful

when fighting for services.

What they also give you is an idea of which other specialists should

evaluate your child, which labwork and tests (MRI, etc.) might be

useful, and, if you're lucky, a dx with a name. That's useful in

describing your child to others and also so that you can then do your

own research.

Back to choosing a doctor: a lot of the best ones are associated

with great children's hospitals and will be in your insurance plan.

In our area, the first choice is CHOP, but their waiting list is

forever and a day. So, you might want to go to one that's good

enough until you can get in to see your #1 choice. If you're pretty

sure it's apraxia/dyspraxia, everybody says Dr. Agin is awesome. I

believe she is out-of-plan for everybody, and quite expensive.

Pediatric Neurologist: We did not need to go this route, but some

do. Also, their waiting lists are much shorter, so people often go

to one while waiting to get in to see the developmental pediatrician.

Occupational Therapist and/or Physical Therapist: If covered by

insurance, get a private evaluation. A lot of kids with

apraxia/dyspraxia have low tone or sensory issues. My son's speech

improved a lot with OT. Working on his tone helped his posture,

which affects breathing and speech production as well as your ability

to do table work with the speech therapist. Sensory issues are also

big, and not just in the oral-motor arena. We didn't realize my son

had balance and coordination issues until we were well into this

because, frankly, all two and three year olds seem a bit clumsy

anyway. When he didn't improve at the right ages, it became obvious

that it was an issue. OT's and PT's can see what we can't. Scored

tests comparing your child to the average are so valuable.

" The Out-of-Sync Child " and " The Out-of-Sync Child Has Fun " are both

excellent books to learn about sensory issues and what you can do to

improve them. The latter book is a fantastic resource for home

activities, and they are fun for all kids.

Audiologist: Has your child had a thorough hearing screening

including a tympanagram? If you think your child has receptive

language delays, not just expressive delays, it may do to either a

hearing problem or an auditory processing problem. They will not

test young children for the latter, so it can be hard to pick up

until later. I suspected it early on (around 3-1/2 or 4), but

everybody said it was too soon to test for it. (The gold standard is

around 7 or 8.) What they all neglected to mention was that you can

work on this earlier without having been formally tested. Which

brings me to...

NACD: If your insurance doesn't cover enough or any therapy, and

EI/school district does not provide high quality and frequent

therapy, you might want to consider an organization like the NACD.

They definitely do things differently. They will evaluate your child

across the board, but not in a formalized-with-scoring way. Then

they provide a home program for you to work with your child every

day. We do this with (5-1/2), and will be doing it with

Tyler (19 months) in a few weeks. It's been great for us, and cost

effective, too.

DAN/Other Medical Specialities: If your child has any other medical

quirks, don't assume that they aren't related to speech. Many things

affect speech, including some types of food intolerances/allegies, GI

issues, ear infections, etc. I'm not opening that can of worms here,

but if you have any specific questions, please post them or email me

offline.

My mil lives in Fairfield and works in Greenwich, and her boss's son

had apraxia (I think), so I'll email her and see if she can get a

recommendation from him. Are you looking for an SLP, doctors, or

both? If you want, you can email the exact specialities and I'll ask

her. She says the kid now speaks " the King's English " , so whoever

they saw must have been good. Previously, only his mother and

brother could understand him.

in NJ

>

> Hey all,

> Hope everyone had a happy valentine's!

>

> So, we have an appointment with a private SLP on March

> 3rd to evaluate him. As of now, we have no formal

> diagnosis of anything. I fear the evaluation won't go

> that great with the SLP b/c is very shy and

> doesn't do well when random strangers try to berate

> him with questions right off the bat. Any

> suggestions/stories on that topic? We have been doing

> early intervention for a few months now, with a case

> worker coming weekly and we have just changed the IFSP

> to include a monthly visit from an SLP. I'm not

> convinced that's the right combination of therapy just

> yet, but I love our case worker, and am not yet sure

> about the SLP. Those of you that have experience with

> early intervention, did your plan usually include OT

> as well?

>

> So, my other question is who else should we plan to

> start seeing? A developmental pediatrician?

> Pediatric neurologist? And does anyone have any

> recommendations for the Fairfield County CT area? I

> also can go into NYC for consults if it would be

> irregularly. I know Dr. Agin is in NYC, but I was

> kind of assuming she's not accepting new patients.

> Anyone know? And does insurance usually pay for

> those, or is that out of pocket?

>

> On a good note, imitated the word " Mama " for

> the first time ever, and just started trying to blow

> (which I have been trying to get him to do forever!)

> Both very exciting things!

>

> Hope everyone's well!

>

>

>

[Guest guest]

Last I heard Dr. Agin was not accepting new patients however, that

changes as it did when we were making appointments and I have heard

that from someone else so it is worth the call. Her associates are

taking patients and I think I heard she reviews their reports. Best

Wishes!

>

> Hey all,

> Hope everyone had a happy valentine's!

>

> So, we have an appointment with a private SLP on March

> 3rd to evaluate him. As of now, we have no formal

> diagnosis of anything. I fear the evaluation won't go

> that great with the SLP b/c is very shy and

> doesn't do well when random strangers try to berate

> him with questions right off the bat. Any

> suggestions/stories on that topic? We have been doing

> early intervention for a few months now, with a case

> worker coming weekly and we have just changed the IFSP

> to include a monthly visit from an SLP. I'm not

> convinced that's the right combination of therapy just

> yet, but I love our case worker, and am not yet sure

> about the SLP. Those of you that have experience with

> early intervention, did your plan usually include OT

> as well?

>

> So, my other question is who else should we plan to

> start seeing? A developmental pediatrician?

> Pediatric neurologist? And does anyone have any

> recommendations for the Fairfield County CT area? I

> also can go into NYC for consults if it would be

> irregularly. I know Dr. Agin is in NYC, but I was

> kind of assuming she's not accepting new patients.

> Anyone know? And does insurance usually pay for

> those, or is that out of pocket?

>

> On a good note, imitated the word " Mama " for

> the first time ever, and just started trying to blow

> (which I have been trying to get him to do forever!)

> Both very exciting things!

>

> Hope everyone's well!

>

>

>

[Guest guest]

I would definitely recomend a developmental pediatrician over a

neurologist....if a neurologist rules out major medical disabilities (downs

syndrome/cerebral palsy) they would the refer to a developmental pediatrician

for thorough eval and diagnosis. We see Dr. Deepa Limaye....she is in

Farmnigton, CT and her wait list is usually not as long as others. There is

also Dr. Ann Milanese at CCMC in Hartford who is great as well but her wait list

is 6months to a year. You could also try the dev. pediatricians at Yale...but I

have heard iffy things about them. As far as therapy goes there is a great

therapy center in Watertown/oakville, CT that we got to and they are the reason

my son talks now. They are wonderful and work great with many kids that are

reluctant and shy. You will not get a diagnosis from birth to three....they can

only tell you how delayed and what areas need work...and they definitely will

never give the diagnosis of apraxia. If you would like anymore info

let me know.

McDevitt <hilarym99@...> wrote:

Hey all,

Hope everyone had a happy valentine's!

So, we have an appointment with a private SLP on March

3rd to evaluate him. As of now, we have no formal

diagnosis of anything. I fear the evaluation won't go

that great with the SLP b/c is very shy and

doesn't do well when random strangers try to berate

him with questions right off the bat. Any

suggestions/stories on that topic? We have been doing

early intervention for a few months now, with a case

worker coming weekly and we have just changed the IFSP

to include a monthly visit from an SLP. I'm not

convinced that's the right combination of therapy just

yet, but I love our case worker, and am not yet sure

about the SLP. Those of you that have experience with

early intervention, did your plan usually include OT

as well?

So, my other question is who else should we plan to

start seeing? A developmental pediatrician?

Pediatric neurologist? And does anyone have any

recommendations for the Fairfield County CT area? I

also can go into NYC for consults if it would be

irregularly. I know Dr. Agin is in NYC, but I was

kind of assuming she's not accepting new patients.

Anyone know? And does insurance usually pay for

those, or is that out of pocket?

On a good note, imitated the word " Mama " for

the first time ever, and just started trying to blow

(which I have been trying to get him to do forever!)

Both very exciting things!

Hope everyone's well!

[Guest guest]

Hi,

I'm oringally from Fairfield County, CT. My family and friends are

all still in CT. I live in Cali now.

I was looking for a Dev. Pedi for my son, but the waiting lists in CA

were 6 months out. I was planning a trip to the East Coast and I

found a Children's Hospital in Westchester that did not have a long

waiting list and they took my insurance.

My only complaints were that they took so long to send the report to

us and then we received the report it was barely anything in the

report. When we were there, the doctor asked us a ton of questions

as far as his development and then did a couple things with my son.

I guess we were expecting much more in the report. I have friends who

had a different experience though.

Here is a website that lists children's hospitals throughout the US.

http://www.artistshelpingchildren.org/childrenhospitals.html

Good luck

Pam

>

> Hey all,

> Hope everyone had a happy valentine's!

>

> So, we have an appointment with a private SLP on March

> 3rd to evaluate him. As of now, we have no formal

> diagnosis of anything. I fear the evaluation won't go

> that great with the SLP b/c is very shy and

> doesn't do well when random strangers try to berate

> him with questions right off the bat. Any

> suggestions/stories on that topic? We have been doing

> early intervention for a few months now, with a case

> worker coming weekly and we have just changed the IFSP

> to include a monthly visit from an SLP. I'm not

> convinced that's the right combination of therapy just

> yet, but I love our case worker, and am not yet sure

> about the SLP. Those of you that have experience with

> early intervention, did your plan usually include OT

> as well?

>

> So, my other question is who else should we plan to

> start seeing? A developmental pediatrician?

> Pediatric neurologist? And does anyone have any

> recommendations for the Fairfield County CT area? I

> also can go into NYC for consults if it would be

> irregularly. I know Dr. Agin is in NYC, but I was

> kind of assuming she's not accepting new patients.

> Anyone know? And does insurance usually pay for

> those, or is that out of pocket?

>

> On a good note, imitated the word " Mama " for

> the first time ever, and just started trying to blow

> (which I have been trying to get him to do forever!)

> Both very exciting things!

>

> Hope everyone's well!

>

>

>

[Guest guest]

My daughter sees Dr. Lampel in White Plains NY. Right off Exit

8 of Route 287 on the on NY border. She is a Physiatrist but

also a Developmental Pediatrician. She is a very nice doctor and very

sweet and compassionate with the children. She listens very intently

and takes just about everyones insurance- even Medicaid (which is

secondary for my daughter)She spends 45 minutes with every patient. A

Ped Neurologist is good to have on board too.

Dr. Lampel is at Children's Rehab Hospital 317 North St. 914.597.4070

>

> Hey all,

> Hope everyone had a happy valentine's!

>

> So, we have an appointment with a private SLP on March

> 3rd to evaluate him. As of now, we have no formal

> diagnosis of anything. I fear the evaluation won't go

> that great with the SLP b/c is very shy and

> doesn't do well when random strangers try to berate

> him with questions right off the bat. Any

> suggestions/stories on that topic? We have been doing

> early intervention for a few months now, with a case

> worker coming weekly and we have just changed the IFSP

> to include a monthly visit from an SLP. I'm not

> convinced that's the right combination of therapy just

> yet, but I love our case worker, and am not yet sure

> about the SLP. Those of you that have experience with

> early intervention, did your plan usually include OT

> as well?

>

> So, my other question is who else should we plan to

> start seeing? A developmental pediatrician?

> Pediatric neurologist? And does anyone have any

> recommendations for the Fairfield County CT area? I

> also can go into NYC for consults if it would be

> irregularly. I know Dr. Agin is in NYC, but I was

> kind of assuming she's not accepting new patients.

> Anyone know? And does insurance usually pay for

> those, or is that out of pocket?

>

> On a good note, imitated the word " Mama " for

> the first time ever, and just started trying to blow

> (which I have been trying to get him to do forever!)

> Both very exciting things!

>

> Hope everyone's well!

>

>

>

[Guest guest]

Thanks so much everyone! I've been weeding through my insurance site while

Jack's napping

now, and think I have found at least a couple dev. pediatricians that the

insurance actually

accepts. Thank you!!!

[Guest guest]

I would definatly call Dr. Agin's office because even if she isn't

taking new patients her office can refer you to someone else. I know

Dr. Abba Cargan who has an office in both NJ and NYC is a pediatric

neurologist that some here speak highly of as well. Most

neurodevelopmental MDs don't have a background as an SLP for a number

of years prior to medical school -that is what sets Dr. Marilyn Agin

(my co author of The Late Talker book) apart from many others.

Here's info on 3 neuroMDs in the metro NY area

> Pediatric neurologists

>

> Dr. Abba Cargan out of Columbia in NY -and in practice in NJ.

> http://www.drcargan.yourmd.com/

> http://www.theodora.com/teddy/newyork/presbyterian.html>

> and Dr. Ming

>

> http://www.umdnj.edu/njmsweb/neuroscience/faculty_bio/old%20bios/Xueming.htm

>

> And in the " NJ area " -Dr. Agin of course! She is a

> neurodevelopmental pediatrician, Medical Director of EI for

NYC, my

> child's neuroMD and my co author of The Late Talker!

>

> Marilyn C. Agin, MD, FAAP

> Neurodevelopmental Pediatrician

> Medical Director,

> NYC Early Intervention (EI) Program

> 79 Laight St. #1A (private office)

> New York, NY 10013

> 212-274-9180 (private office phone)

> 212-219-3688 (fax)

> http://www.cherab.org/information/aginmdapraxia.html

I don't believe it's unusual for apraxic children to be a bit more

reserved when preschool age. Most have average or above cognitive

and receptive abilities and are dealing with communication

frustrations. The more they are pushed to be verbal -the more they

could back off. A good SLP knows how to work with children like ours

to open up- and you'll be shocked at how much more they'll get out of

your child then you even thought they were capable of! I thought

Tanner was shy too when he was little. Once he became more verbal

it was clear he was not shy at all -just the opposite! As always the

most important thing to work on outside of speech therapy is keeping

your child's self esteem intact.

Outside of speech therapy- don't underestimate the power of fish oils

(and now vitamin E) Many here have children like mine that needed

only that and nothing more to become mainstreamed in school and life.

Below is a a message about another shy child also named

which I wrote in 2003 -but could have written today -and then some

new member archives.

From: " kiddietalk " <kiddietalk@...>

Date: Sun Jun 15, 2003 5:09 pm

Subject: almost one year later!

Hi Kim,

It's really great to hear that at 3 years and 3 months is

able to express his curiosity by asking all the " what " questions, it

provides you wonderful opportunities to expand 's

communication when you answer. Even if he's not yet talking enough

for the two of you to have a " full " conversation -you can take his

answers -repeat and expand them.

I also would not be concerned about not saying " hi " or " hello " back

to neighbors yet -based on the rest of your email -it appears that

is the type of child that is not comfortable being outwardly

social just yet. Perhaps this has to do with his confidence in

saying " hi " with any pressure on him, especially since you are

reporting he is experiencing more articulation breakdowns. I

wouldn't push it now. What you can do is practice social skills

such as this with puppets -have him hold a puppet and you hold one

and " talk " back and forth. Say all the typical stuff like hi -how

are you? -fine how are you? etc. When something is in the apraxic

child's motor memory -it usually will come out as an auto response -

like it does for us.

To get a more complex answer to " How was your day? " try to ask

specifics instead such as " I heard you laughed at something today -

what was that? " (remember when we were little and our parents told

us " a birdie told them " what we were doing -make up what you heard

at times) Or you can try " who did you play with? " If he's with

someone other than you -use a communication book as talked about in

the book The Late Talker. If isn't comfortable answering

these questions yet don't fret -and don't stop asking -end on a yes

or no question and then try again another day.

Each child has a unique learning cycle -I posted a childcare

guideline link once which basically covered we need to observe the

child to see what style learning will work best for him or her -this

doesn't just apply to special needs children -this is for any

child. Again -based on what you wrote - is much like

Tanner -a bit more reserved. With a child with special needs

together with intelligence -they know there are some things they can

do well -and some that they can do once in a while -not

consistently -and things they are not comfortable trying. Even

today -Tanner is still reserved when he first works with a new

teacher or in a new classroom -he needs a warm up time -and then he

becomes very outgoing.

And to prove this is not just for " special needs kids " advice:

" First, let your child know that if she's a little more reserved and

introverted than her peers, that's okay. Shy kids often need a bit

more time than others to adjust to new situations like kindergarten.

Your job as the parent of a shy child is to support her until she

feels comfortable in an unfamiliar setting and help her work up to

the challenge of interacting with a group of other children...You

may hear a lot of talk about not pushing a very shy child at this

age, but if you don't nudge her a little, she isn't going to have as

much exposure to other people or activities as she could. And that

can hurt her in the long run, since kindergartners learn a lot about

the world from each other. That said, you never want to overload a

shy child with social obligations. Watch and listen for her cues: If

she's uncomfortable or cranky, then ease up and give her the quiet

and space she craves. Shy kids need extra downtime after school each

day when they can simply spend time with familiar things and people

and engage in some low-key, self-directed activities. If you think a

full day might be too much for your shy child, consider opting for

half-day kindergarten if you have the choice. "

ne Ayers Denham, Ph.D., developmental psychologist

http://www.parentcenter.com/expert/parenting/development/4838.html

For the articulation break downs you report. This depends on a few

things -this is typical for apraxic children as utterances become

more complex or longer. It's also typical of apraxic children to

have this breakdown even with words they know well when used while

attempting to express more complex thoughts. What I'm not sure

about is this has just started and you are changing EFA formulas and

dosages -these changes on the EFAs happen rather quick -so you may

want to change back to what you were doing before and watch again?

Are the articulation errors on single word utterances that he

used to be able to say clearly like " mommy " ? If so -I would

question 's developmental pediatrician and SLP about this.

Yes I do strongly feel there are environmental factors together with

genetic factors in the reasons to the rise in children with

multifaceted communication impairments. I don't however believe in

any treatment above others -besides EFAs -which appears to work for

almost all of our children -is relatively easy to find -inexpensive -

virtually no side effects.

I'm not sure that there is one proven way to remove all toxins just

yet for all of our children. Also- we don't really know which are

the ones to worry about- the toxins that remain in the body/hair vs.

the ones that passed through at some point during prenatal stages or

early childhood development and changed the brains neurological

function, delayed myelinazation subtly for example (which is what I

believe happens)

Regardless of whether the toxins are removed now or not we do not

know what effect this will have on our children as a group. There

are many who believe in DAN protocol on this list who are very

expressive. My suggestion is join or start a support group in your

area for accurate numbers of how many a certain therapy or protocol

work for. In our group -blood analysis was very expensive and not

necessary in many cases. As far as DAN docs -in our group it

was split as to did they " work " due to this -Tanner has never

been to one -and so far I haven't had the need to pursue this with

him.

In most cases when the EFAs are added with the right formula the

changes happen with or without any of the expensive tests and

treatments. If you have the money to explore and it's not going to

hurt to try -then try it.

What do I believe will help our children as a group? Getting all

the numbers and stats together

-and getting all of this over to the CDC to study.

is one of the lucky ones as far as I see it! He's got you

and to me from the outside it sounds like he's doing great and is on

the right track no matter what you decide. With a parent like you

he can't lose.

I hope as we talked about by posting this here -others can also

comment and make suggestions to help -and help relieve your

stress that it's OK. (and perhaps -as in the advice I gave you last

year - you do have to still wait that one more year to check just

how far has come)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Below is a ton of archives that may help -please feel free to call me

at 772 335 5135 ~