Need some help Locally-- Bergen/Passaic Cty New Jersey

[Guest guest]

Hello Everyone-

My 3 1/2 yr old son has had a huge regression in the last two days. (he

woke up Thursday morning with it being physically evident)

We already have an SLP who has diagnosed him with Apraxia, Oral Motor

weakness, etc, but we also know that he has Global Apraxia (of Developmental

Dyspraxia I guess, depending on where you're located)

We really need to find a LOCAL Expert on Apraxia who is able to help us with

the MEDICAL issues that he's facing. We have our private SLP, a 2nd SLP, OT

and PT that we're dealing with at Valley CCD, in combination with a

Physiatrist, and an Orthopedic Md. We've also been to a regular neurologist

(was NOT

impressed with him AT ALL) and a Neurological Developmental Pediatrician, but

it seems that while they're all experts in what they do, they don't seem to

know much about APRAXIA, and how his physical issues will be affected with the

neurological sometimes.

I have no idea what caused this regression/set-back, but we definitely feel

that we need to find a local Apraxia Expert that would be able to help us out

with all of this. Bergen or Passaic Counties are ideal, but County is

also a possibility if we can't find one in the other counties.

We have an appt on Monday to see the Orthopedic, but I KNOW this isn't an

Ortho issue, his PT knows this, his OT knows it, the Chiropractor knows this,

but we just have to find someone that DOES know what they are doing.

Anyone know where to send me?

Thanks in advance

Becky<~ a mom who's at the end of her rope

**************************************See AOL's top rated recipes

(http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

[Guest guest]

Becky:

You might want to try to find a metabolic specialist either

Neurologist or Geneticist that specializes in metabolic

disorders/diseases. They will be able to run more indepth labs and

hopefully help you find some answers.

Regressions when sick seem to be somewhat of the norm for many

apraxic children.

Maybe someone on the board can give you a list of specialist that are

near you.

Good luck to you,

Tina

>

>

> Hello Everyone-

>

> My 3 1/2 yr old son has had a huge regression in the last two

days. (he

> woke up Thursday morning with it being physically evident)

>

> We already have an SLP who has diagnosed him with Apraxia, Oral

Motor

> weakness, etc, but we also know that he has Global Apraxia (of

Developmental

> Dyspraxia I guess, depending on where you're located)

>

> We really need to find a LOCAL Expert on Apraxia who is able to

help us with

> the MEDICAL issues that he's facing. We have our private SLP, a 2nd

SLP, OT

> and PT that we're dealing with at Valley CCD, in combination with a

> Physiatrist, and an Orthopedic Md. We've also been to a regular

neurologist (was NOT

> impressed with him AT ALL) and a Neurological Developmental

Pediatrician, but

> it seems that while they're all experts in what they do, they

don't seem to

> know much about APRAXIA, and how his physical issues will be

affected with the

> neurological sometimes.

>

> I have no idea what caused this regression/set-back, but we

definitely feel

> that we need to find a local Apraxia Expert that would be able to

help us out

> with all of this. Bergen or Passaic Counties are ideal, but

County is

> also a possibility if we can't find one in the other counties.

> We have an appt on Monday to see the Orthopedic, but I KNOW this

isn't an

> Ortho issue, his PT knows this, his OT knows it, the Chiropractor

knows this,

> but we just have to find someone that DOES know what they are doing.

>

> Anyone know where to send me?

>

> Thanks in advance

>

> Becky<~ a mom who's at the end of her rope

>

>

>

>

>

>

> **************************************See AOL's top rated recipes

> (http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

>

>

>

[Guest guest]

I have heard good things about Dr. Marks at St. s Hosp in

Philly. Far from Passaic but it is not like you will be headed there

daily.

> >

> >

> > Hello Everyone-

> >

> > My 3 1/2 yr old son has had a huge regression in the last two

> days. (he

> > woke up Thursday morning with it being physically evident)

> >

> > We already have an SLP who has diagnosed him with Apraxia, Oral

> Motor

> > weakness, etc, but we also know that he has Global Apraxia (of

> Developmental

> > Dyspraxia I guess, depending on where you're located)

> >

> > We really need to find a LOCAL Expert on Apraxia who is able to

> help us with

> > the MEDICAL issues that he's facing. We have our private SLP, a

2nd

> SLP, OT

> > and PT that we're dealing with at Valley CCD, in combination with

a

> > Physiatrist, and an Orthopedic Md. We've also been to a regular

> neurologist (was NOT

> > impressed with him AT ALL) and a Neurological Developmental

> Pediatrician, but

> > it seems that while they're all experts in what they do, they

> don't seem to

> > know much about APRAXIA, and how his physical issues will be

> affected with the

> > neurological sometimes.

> >

> > I have no idea what caused this regression/set-back, but we

> definitely feel

> > that we need to find a local Apraxia Expert that would be able to

> help us out

> > with all of this. Bergen or Passaic Counties are ideal, but

> County is

> > also a possibility if we can't find one in the other counties.

> > We have an appt on Monday to see the Orthopedic, but I KNOW this

> isn't an

> > Ortho issue, his PT knows this, his OT knows it, the Chiropractor

> knows this,

> > but we just have to find someone that DOES know what they are

doing.

> >

> > Anyone know where to send me?

> >

> > Thanks in advance

> >

> > Becky<~ a mom who's at the end of her rope

> >

> >

> >

> >

> >

> >

> > **************************************See AOL's top rated recipes

> > (http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

> >

> >

> >

[Guest guest]

> I have heard good things about Dr. Marks at St. s Hosp

in Philly.

We see Dr. Marks. While he will be the first to tell you that he

does not know the first thing about " apraxia, " if you describe your

symptoms and they sound like a possible metabolic/mitochondrial issue

he will tell you so and do the testing. Symptoms do include

regressions, especilly after illness. They also include lack of

coordination of the type associated with global dyspraxia. We had the

testing done.

The bloodwork did not fit the pattern for a mito disease but there

were abnormalities like carnitine deficiency, low creatine, and low

pyruvic acid. Dr. Marks was familiar with some research indicating

that a child presenting that way might still have impaired mito

function so he helped us start a mito cocktail. Recently, upon our

request, he ran a B12 level and we discoved that Ethan was low so he

has also prescribed B12 shots.

In short, while he may not be an expert in " apraxia, " he does

recognize that it is a possible symptom of the things that he IS an

expert in and he is helpful in that regard. At least he has been

with us.

Good luck.

Nadine

[Guest guest]

I have also seen regressions when my daughter is sick- or its looming in

the distance. I grew up in that area near Bergen Co. but am not there

now. I would check with the bigger hospitals down there for

Neurologists. Since Apraxia is a Neurological condition- it can only be

diagnosed by a doctor. The SLP might have a general idea, but a true

diagnosis needs to come from one of the doctors. Check your insurance

plan for Neurologists and ask other moms and family for a good

recommendations. There are good neurologists in Columbia Presbyterian

and downtown NYC hospitals. From there they can help you with blood work

and other testing they might see as needed.

w

>

>

>