Re: 21 mo old son newly diagnosed w/ apraxia - need therapy advice/suggestions

September 7, 2010

Hi ,

Welcome! I'm fairly new to the group too. My daughter is 26 months and has

speech (and other services) through E.I. in NYC. She has had speech twice a week

for 4 months, but we have seen progress. I got a diagnosis from her neurologist

and have appealed to E.I. for more therapy sessions. We are still awaiting a

response. We asked for 5 x, but we know that's a reach, and we are hoping for 3

or 4. I was told that we could get a Prompt therapist through E.I., but we would

lose our current one. Madelyn's therapist uses a variety of approaches and we

have seen progress in vocalizations and word approximations, as well as in

chewing and eating.

I am looking forward to seeing other responses. I'll keep you posted on whether

we were successful in increasing her speech services.

,

mom to Madelyn (26 months) with apraxia, hypotonia, and global delays, and her

brother and sister.

From: Waldo Interiors

Sent: Tuesday, September 07, 2010 2:09 PM

Subject: [ ] 21 mo old son newly diagnosed w/ apraxia - need

therapy advice/suggestions

Hi Everyone,

My name is and I've been lurking on this board for a few

weeks and have been blown away and touched by the support and

resources being shared on this list. Just last week my 21 month old

son was diagnosed with Apraxia and I'm trying to figure out what our

next steps for treatment should be.

Ethan has been in regular speech therapy (1x a wk - in home, private

sessions) with the Early Intervention program in Pennsylvania (we live

in the Philadelphia area) for 5 months with little to no progress.

After being frustrated with our speech therapist regarding my son's

lack of progress and any suggestions from her on what to do about it,

on a recent vacation to the San Francisco, CA, I located a speech

pathologist experienced in apraxia and had him evaluated by her. I'm

still waiting for the full diagnoses report, but essentially she felt

that Ethan does have apraxia.

My question now is: what kind of speech therapy support should I try

to get for him? I've heard that PROMPT therapists seem to help with

Apraxia - are there other specializations I should consider? I would

love to see the person who evaluated him (she's even in our insurance

network) but given she's across the country, she's not an option.

I figured that I would try to get additional services through our

Early Intervention program for hopefully a therapist with some

experience in Apraxia and perhaps more sessions per week? I also

assumed that I'd try to locate some kind of private therapist with

experience in Apraxia to supplement the Early Intervention work b/c

frankly, I don't have a lot of hope that they will have a competent

therapist with experience in Apraxia (my experience so far with EE has

been very disappointing).

Can you tell me what approach you took for your child with apraxia and

what you'd recommend? Has anyone had experience getting increased

services through Early Intervention for apraxia? If so, what kind?

Also, we're in Northwest Philadelphia (right near the PA turnpike) and

I was told that there is essentially only one local speech pathologist

in the Philly area who has true apraxia expertise (and she doesn't

have any openings until end of January!!). If you have any

suggestions for private therapists with apraxia experience in the

Southern or Northern NJ or even the lower NY area - that would be

great. For private therapy, I'm willing to travel to get the right

expertise and will consider anyone within an 80 (or possibly 100) mile

radius from our zipcode of 19119. Not ideal, but want to do what it

takes...

I should note that we've had Ethan on ProEFA (1/2 TSP of the liquid

version) for 4 weeks and it has definitely made a difference. I also

will be starting the EPA soon and will be looking into adding NV based

on testimonials I've read from this list. We're meeting with a

naturopath later this week due to another health issue for my son and

I'm hoping she'll be able to help us look into starting NV and any

other relevant supplements (for apraxia and also his immune issue -

selective IgA deficiency).

Thanks so much for any help. I'm feeling a bit overwhelmed about how to proceed.

Best,

September 10, 2010

Thanks , Sharon, and everyone who responded. I appreciate everyone's

insights and experiences - so helpful! This is such a new and daunting

journey and I'm grateful to have found this group and the various websites

that provide so much valuable information.

I'm in the process of seeing if we can get a speech therapist with apraxia

experience through our Early Intervention - and if not (or if the number of

available sessions is limited) I'm going to look into private options

through our insurance or out of network. Still trying to find local Philly

or nearby (NJ or NY or other close) providers, but hoping to tackle that

next week.

In the meantime, I had a very productive appointment with a pediatric

naturopath in our area. We originally signed up to meet with her due to my

son's also recent diagnoses as having Selective IgA deficiency, but I will

definitely ask her to support us in any dosage increases we do for the

ProEFA, ProEPA and eventually starting NV (which I hope to do soon). I was

surprised to learn that she thinks Ethan's IgA deficiency, apraxia, and his

infant issue with reflux - are all connected. I've suspected as much, but

hoping to learn more as we work with her...

I'm sure I'll have other questions as I move forward and I hope to someday

be able to support others new to this journey as well.

Thanks everyone!

-

>

> Hi and welcome!

>

> At our http://www.apraxia.org group in the discussion section there is a

growing wealth of information -here is some new to apraxia info

> http://www.facebook.com/topic.php?uid=115029735601 & topic=7329

>

> I know we have many members in your area so tweaked the subject name a bit so

that others can contact you. In addition below are a few contacts you can reach

out to from one of our support pages:

> Children's Apraxia Network of PA

> (Philadelphia, PA and surrounding area)

>

> Contact:

> Phone: (610) 725-8815

> Email: wenobrooks@... or

> Contact: Lia Gorman

> Phone: (610) 296-2330

> Email: jimliagorman@... or

> Contact: Helene Teufel

> Phone: (215) 579-6268

> Email: hteufel@...

> Meets: Monthly throughout school year at Kencrest Plymouth Meeting Office,

Suite 200 at Plymouth Meeting Mall Office Building Plymouth Meeting,

Pennsylvania.

>

> Support Contacts*:

> Contact: Barbara Eckert

> Tionesta/Clarion, Pennsylvania

> E-Mail: borjeckert@...

>

> Contact:Melonie Mackey

> Greensburg, PA

> Phone: (724) 837-9303

> E-mail: vondreele@...

> Website: http://www.geocities.com/vondreele/hlthmed.html

> ~~~~~~~~~~~~~~~~~~~~~

>

> I am a huge fan of SLPs that have many therapies that they are trained in that

they can pull from depending upon the goal, the child, and that particular day

as we know kids are going to be kids. So I personally did not seek out

therapists who were only trained in PROMPT (touch cue) but in other motor

planning techniques as well. And there is something else many forget about when

it comes to children today with apraxia if that is what your child has. As

you'll read in the link here

http://www.facebook.com/topic.php?uid=115029735601 & topic=7329 most children

today with apraxia are not only dealing with motor planning issues but with

sensory, muscle weakness and motor planning in the body as well. I've always

been in to therapists who looked at the " whole body " (below is a private email

from a parent who I referred to Tanner's private SLP in his younger years who I

still highly recommend for those in Jersey) I also highly recommend those

therapists who know how to keep it fun for preschool children and get work done

while the child views the work as " play " If a child has apraxia typically it's

years of intensive and at times daily speech and occupational therapy ahead. Of

course recently we are learning about ways to accelerate that quicker such as

with fish oils and NV -but you don't want to burn a child out by the time they

are 3 years old.

>

> Please read over this link

http://www.facebook.com/topic.php?uid=115029735601 & topic=7329 and let us know

what questions you have after.

>

> Speaking of SLPs I recommend -here's a message with names out from someone who

just saw Tanner's SLP in the early days -someone who DOES look at the whole

body:

>

> Hi ,

>

> Thank you again for pushing me to call Ortega! We saw her this past

Thursday. It was an eye-opening experience!!!

>

> Took her less than 5 minutes to pinpoint an issue no one else had identified.

All she did was watch (who will be 33 months on Friday) walk to her room

and start playing with some toys on a table and take a quick glance at the

paperwork I had filled out. Once she saw he had torticollis, she said that was

our issue, that it had never been resolved even if his head no longer tilted,

and we needed to address that first before we could even focus on the speech.

Apparently, his body is compensating for the torticollis, and it's affecting his

posture, his breathing, even the muscles of his jaw and tongue. When she got

him on her table, she confirmed the tight neck muscle and spent about 40 minutes

working to release the muscle, so it would naturally align itself, rather than

stretch it like the PTs did. She also mentioned that there are speech delays

with most cases of torticollis - I don't ever remember hearing or seeing that in

all my research back then, and I'm guessing neither have our MDs and therapists

working with him.

>

> We will see her weekly weekly starting 9/16 for a 50 minute session. Once we

get the torticollis resolved, we'll move on to speech. She really has a

fascinating background...

>

> She also recommended private OT to deal with his sensory issues and dropping

all the other speech and other EI services except for the DI. Funny - she's like

the first SLP I've talked to who actually recommended DI rather than dismissing

it. I have a call into the firm where she's now sharing space (she just

relocated to Warren last week) for the OT services, but we may take our time to

drop the rest of the services only because I know once we drop something

especially in EI, we may never get it back before my son ages out in December.

But for the first time in at least the past 2 months, I feel like we're on to

something and am optimistic (fingers crossed!).

>

> The funny thing is I've been wondering for awhile if there was some

relationship between the torticollis and the apraxia, particularly since there

seem to be a number of kids with both conditions on the board. I had brought up

his torticollis to his PT at least twice this summer, primarily because one

shoulder is higher than another, and I had seen a slight tilt a few weeks back

(though I know that can come back temporarily when there are new milestones

being worked on). The PT had told me that his neck was tight (aka keep

stretching!), but not to worry about the shoulders, that most of us have one

shoulder higher than the other and it's related to handedness.

>

> Ironically, last Wednesday we saw our PT for a monthly session and got to

talking about _____'s limited progress despite all the intensive therapy he's

been receiving since May or June. She had mentioned she knew of a really great

private SLP who seems to get results when others don't. Turned out it was

Ortega!

>

> ~~~~~~~~~~~~~end of clip

>

> Hope the above is an example of when you search out a private therapist you

aren't only looking for someone who knows one type of therapy but one who has

many tricks of knowledge in the bag to help, someone who can be your child's

hero.

>

> =====

>

September 11, 2010

Also visit www.AAPPSPA.org to find a private practice SLP near u.

Warmest wishes,

Barbara A , M.S.,CCC-SLP

President,

Help Me Speak, LLC

www.helpmespeak.com

2500 Wallington Way

Suite 103

Marriottsville, MD 21104

410-442-9791

Ask me about NutriiVeda!

On Sep 10, 2010, at 11:08 PM, Waldo Interiors

<michelle@...> wrote:

> Thanks , Sharon, and everyone who responded. I appreciate everyone's

> insights and experiences - so helpful! This is such a new and daunting

> journey and I'm grateful to have found this group and the various websites

> that provide so much valuable information.

>

> I'm in the process of seeing if we can get a speech therapist with apraxia

> experience through our Early Intervention - and if not (or if the number of

> available sessions is limited) I'm going to look into private options

> through our insurance or out of network. Still trying to find local Philly

> or nearby (NJ or NY or other close) providers, but hoping to tackle that

> next week.

>

> In the meantime, I had a very productive appointment with a pediatric

> naturopath in our area. We originally signed up to meet with her due to my

> son's also recent diagnoses as having Selective IgA deficiency, but I will

> definitely ask her to support us in any dosage increases we do for the

> ProEFA, ProEPA and eventually starting NV (which I hope to do soon). I was

> surprised to learn that she thinks Ethan's IgA deficiency, apraxia, and his

> infant issue with reflux - are all connected. I've suspected as much, but

> hoping to learn more as we work with her...

>

> I'm sure I'll have other questions as I move forward and I hope to someday

> be able to support others new to this journey as well.

>

> Thanks everyone!

> -

>

> >

> > Hi and welcome!

> >

> > At our http://www.apraxia.org group in the discussion section there is a

growing wealth of information -here is some new to apraxia info

> > http://www.facebook.com/topic.php?uid=115029735601 & topic=7329

> >

> > I know we have many members in your area so tweaked the subject name a bit

so that others can contact you. In addition below are a few contacts you can

reach out to from one of our support pages:

> > Children's Apraxia Network of PA

> > (Philadelphia, PA and surrounding area)

> >

> > Contact:

> > Phone: (610) 725-8815

> > Email: wenobrooks@... or

> > Contact: Lia Gorman

> > Phone: (610) 296-2330

> > Email: jimliagorman@... or

> > Contact: Helene Teufel

> > Phone: (215) 579-6268

> > Email: hteufel@...

> > Meets: Monthly throughout school year at Kencrest Plymouth Meeting Office,

Suite 200 at Plymouth Meeting Mall Office Building Plymouth Meeting,

Pennsylvania.

> >

> > Support Contacts*:

> > Contact: Barbara Eckert

> > Tionesta/Clarion, Pennsylvania

> > E-Mail: borjeckert@...

> >

> > Contact:Melonie Mackey

> > Greensburg, PA

> > Phone: (724) 837-9303

> > E-mail: vondreele@...

> > Website: http://www.geocities.com/vondreele/hlthmed.html

> > ~~~~~~~~~~~~~~~~~~~~~

> >

> > I am a huge fan of SLPs that have many therapies that they are trained in

that they can pull from depending upon the goal, the child, and that particular

day as we know kids are going to be kids. So I personally did not seek out