Neuro Developmental Peds in NYC-NJ Area

[Guest guest]

Hi There.

My name is Joanne.

Not sure if this is going to post correctly (i don't know

my way around these message boards.)

My question about these dev. ped's is that besides this

Dr. Marilyn Agin (her now famous book, her knowledge of

apraxic kids, etc.) what other dev. peds. will diagnose

apraxia. We've been to a neurologist at Mt. Sinai (Pavlakis)

and two neuro. dev. peds (Taft - Woods) & (Aloisio -

Jersey Shore, Neptune, NJ). None of them go down the apraxia

route. All they said was that my son (33 mos now) show signs

of PDD and that he needs therapy and he needs the full day

preschool disabled program. Since Dr. Agin is booked or the

next century, it's very frustrating that none of these other

Drs. seem to take a stand on the speech front, per se. I guess

they leave it up to the SLP in the school district. But then

I was under the impression that SLP's can't make diagnoses.

What the hek are we supposed to do? It's just very frustrating.

Thanks to all of you for letting me vent on this site.

Joanne, Middletown, NJ - mother of 33 month old son

>

>

> ________________________________________________________________________

> ________________________________________________________________________

>

> Message: 20

> Date: Tue, 16 Mar 2004 09:12:43 -0800 (PST)

> From: Bachman <susan3959@...>

> Subject: REVISED - Help - Developmental Ped - NYC Area

>

> Hi,

>

> I would greatly appreciate a referral/recommendation

> to a developmental ped in the NCY / Westchester

> area. Briefly, my daughter Callie is 25 months old, home

> 13 month from China & is currently in the EI program in

> Westchester. She gets 3 45 min sessions per wk of

> speech therapy & was just evaluated for OT ( low

> muscle tone, sensory integration issues, oral/motor

> weakness etc.. ) We hope to begin the OT in a month or

> so. Her SLP is trained in PROMPT & uses that as well as

> other techniques during her sessions. Callie has made

> some progress, but int he 6 months of speech, she has

> added a few sounds, but no actual words.

> She has not formally been diagnosed with apraxia, but

> my gut & the signs tell me she is in fact apraxic.

> I would like to take her to a dev. ped & called Dr.

> Agin. Unfortunately, she is not taking on new

> patients. I was put on a wait list, to be possibly

> called in April/May for an appt. mid to late winter.

> Clearly, I do not want to wait that long.

> I am hoping that through such a large network I can

> get a recommendation of a Dr. to see Callie.

> Any help would be great. I wanted to mention that this

> group has been so great & informative, I've learned so

> much in a short time & it has helped me to move int he

> right direction to help my child.

>

>

> Thanks

>

>

\

[Guest guest]

Hi Joanne, and all,

I've heard great things about Xue Ming MD PhD who is a pediatric

neurologist out of UMDNJ who runs the autism center there. She is

one of the neurologists I presented the CHERAB findings of EFAs to.

http://www.cherab.org/information/dietaryeffects/Englemed.html

(and the myelin theory)

Dr. Ming studied under Dr. Hugo Moser (made famous in the public by

the movie Lorenzo's Oil) so she is a neuroMD you could see who

could actually tell 'you' about the importance of EFAs for our

children (and us)

http://njms.umdnj.edu/neuroscience/faculty_bio/old%20bios/Xueming.htm

Below is also an archive about another neuroMD in your area: ~

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

Date: Thu Feb 5, 2004 3:13 pm

Subject: Re: new to group/ to for twins

,

As promised I have the name and phone number of the neurologist that

the other set of twins I know are seeing and happy with. Dr. Cargan

has also just referred his patients to see Dr. Marilyn Agin as well

to see if she has other suggestions.

This doctor's name is Abba Cargan MD and the number to his practice

in NJ is 908 233 5000 (in Mountainside, NJ)

http://www.american-physician.com/NJ/Springfield.asp

Dr. Abba Cargan's NY number where he works through

Columbia-Presbyterian Medical Center is 212-305-5244

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

http://cumc.columbia.edu/news/reporter/archives/repo_v5n1_0003.html

The parents of the twins I know that I speak of below, are more than

happy to speak with the parent's of the twins that you know -but

asked that they please reference my name when calling.

I am not posting their number here -but if interested -please email

me off list with your number so I can get more information to you.

> , I have a similar story of two year old twins from NJ who

> are currently seeing a neurologist from NYC -who recommended they

> start the children on ProEFA and appropriate therapy and come back

> to see him in 3 months. This neurologist now wants these parents

to

> take the children (especially the one who is more severe) to see

Dr.

> Marilyn Agin to see if there are other suggestions on how to help

> them. I'm going to get you the name of the NYC neurologist and

post

> it here for all since it's kind of ironic how I found out about

this

> family, it's twins just like you posted about where one if more

> severe than the other -and they highly recommend this NYC

> neurologist who may be good for your friends to take their twins

to

> since Dr. Agin's waiting list is just crazy. It may also be good

to

> get the parents together too off list so they can talk since they

> are going through the same thing.

(PS...Dr. Agin 'is' worth the wait!)

=====

[Guest guest]

Joanne--

I think I might have written you before, but I know I've given out

this info before to a few people privately, so I'll post it

publically this time. ;-)

If you are willing to make a slightly extended trip, over to Hamilton

Township outside Trenton/Princeton area, Dr. Rose Merola with

Children's Specialized Hospital is one of those developmental

pediatricians who does recognize and can diagnose apraxia. She

diagnosed my son, and through the grapevine on this very message

board, I was able to find out that she's a former collegue of Dr.

Agin's (Dr. Agin used to work at CSH in Mountainside with Dr.

Merola), and Dr. Agin highly recommended Dr. Merola. To Dr. Merola's

credit, she is also the head developmental pediatrician at the Staten

Island Children's Hospital. Wheh she diagnosed my son Drew six

months ago (we go for our checkup with her next week!), right off the

bat, she told us to take the fish oils, read Dr. Agin and 's

book, " The Late Talker " , and made other recommendations about how his

apraxia should be treated along with his DSI and what it was all

about. I think she'll be happy with the progress Drew has made in

the last 6 months!

Dr. Merola practices at both Mountainside and Hamilton. I'm just

thinking that Hamilton is probably closer to you, even though both

are a bit of a stretch.

Here's the directions on how to get to the Hamilton facility:

http://www.childrens-specialized.org/help/hamilton.php3

Also check the website for the phone number in Hamilton to call to

make an appointment. Dr. Merola is very knowledgeable and definitely

on the cutting edge along with Dr. Agin.

Hope this helps....

le (SAHM to Drew, 2.9 yrs. apraxia, DSI and hypotonia)

> Hi There.

> My name is Joanne.

> Not sure if this is going to post correctly (i don't know

> my way around these message boards.)

>

> My question about these dev. ped's is that besides this

> Dr. Marilyn Agin (her now famous book, her knowledge of

> apraxic kids, etc.) what other dev. peds. will diagnose

> apraxia. We've been to a neurologist at Mt. Sinai (Pavlakis)

> and two neuro. dev. peds (Taft - Woods) & (Aloisio -

> Jersey Shore, Neptune, NJ). None of them go down the apraxia

> route. All they said was that my son (33 mos now) show signs

> of PDD and that he needs therapy and he needs the full day

> preschool disabled program. Since Dr. Agin is booked or the

> next century, it's very frustrating that none of these other

> Drs. seem to take a stand on the speech front, per se. I guess

> they leave it up to the SLP in the school district. But then

> I was under the impression that SLP's can't make diagnoses.

> What the hek are we supposed to do? It's just very frustrating.

> Thanks to all of you for letting me vent on this site.

> Joanne, Middletown, NJ - mother of 33 month old son

[Guest guest]

dr Kathleen Selvaggi FAdden out of town Memorial Hospital is excellent.

She can also book far out but is well worth the wait. Plus she is one of the

only dr's I have ever brought my daughter to that spent more than 15 minutes

with us.

, Mom to Amara (5year old, apraxia, global developmental delays)