Re: Totally confused

September 14, 1999

GSMC? whats that? boy this dr sounds way to weird, it doesn't sound

normal,if anyone has ever heard of such a thing please let me know,lol kinda

funny though,espically #'s 4 & 5

rheumatic Totally Confused

> From: Joyce <hiattruc@...>

>

> Hi Group,

>

> well, the day finally arrived for my appointment with the Great Smoky

> medical Center doctor. I knew to expect something different from

> mainstream but I'm throughly confused about the tests and treatments

> suggested by the doctor.

>

> 1. He said that there is a red stripe in my mouth that shows mercury

> sensitivity.(I have 10 Amalgram fillings and one root canal.) He said the

> root canal was the worst thing anyone could have and suggested it be

removed.

>

> 2. He said my reflexes also showed Merxury problems.

>

> 3. While lying flat, he told me to hold up my right arm and to try to

> resist his trying to push it down. during that test, I was aware that he

> laid something on my stomach but he didn't tell me until later that it was

> a small vial of Mercury and that my arm showed no resistance to his

pushing

> it down while the vial was on my stomach. I honestly can't remember if he

> told me to resist while the vial was there.

>

> 4. He suggested auto hemo therapy (injections of my own blood in my

> buttocks), saying it would make me feel great for 5 or 6 days. i told him

> I wanted to hold off until I can study the procedure.

>

> 5. He wanted to give me shots of Lidocaine in two pressure points on my

> shoulders, saying that the injections would stop my nagging cough. I

> decided to also hold off on that.

>

> 6. I was given a hair analysis test kit and a stool tet kit to take home

to

> complete and mail to them. Those I will do!

>

> 7. he wants me to return on Sept.22 for chelation intrevenous therapy to

> see how much metal is excreted in my urine. I haven't quite decided

> whether I'll do this. I need your imput!

>

> 8. He wants me to get a panarex x-ray of my teeth and to let their

> radiologists interpet them.

>

> Has anyone in this group been to one of the GSMC doctors.

>

> Group, I would appreciate any thoughts or feelings you have on the above

> info. I wonder if this is legitimate or just way out in left field.

>

> By the way, it is quite expensive!

>

> Joyce

>

> ---------------------------

September 14, 1999

Hi Joyce,

I don't know how much my ideas are worth, but I will share the little

experience I have with some of this.

>

> 1. He said that there is a red stripe in my mouth that shows mercury

> sensitivity.(I have 10 Amalgram fillings and one root canal.) He said the

> root canal was the worst thing anyone could have and suggested it be

removed.

PJ replies:

I have heard this about root canals from Dr. Cheney. However, I just

had to chose between a root canal or pulling the tooth. I went to an

endodontist. He did a special xray of the root and it showed a dark shadow

around the root - evidence of infection. He said that if he did the root

canal carefully he felt it would not be a problem. I asked him to do

another xray in a few months after doing the root canal, and he said he

would. I really didn't want to get the tooth pulled. I hope I have made

the correct decision. This is a tough call.

As to the mercury fillings, this is what Cheney said, " They can be a problem

for some people. It depends on whether you have the gene which will protect

you. If you don't have the protective genes and you already have mercury

fillings it is too late. Removing the fillings is exposing you to more

mercury than leaving them in. Basically, removing them is not going to fix

you if you have the bad genes anyway, it is too late. " Cheney is highly

respected. I am inclined to think he knows best on this matter, but many

will disagree with him. Of course, my dentist just insists that mercury

fillings are no problem and that mercury does not leech out of the

combination of metals, ie it is an amalgam or mixture of metals, not just

mercury. Again, who knows?

>

> 2. He said my reflexes also showed Merxury problems.

>

> 3. While lying flat, he told me to hold up my right arm and to try to

> resist his trying to push it down. during that test, I was aware that he

> laid something on my stomach but he didn't tell me until later that it was

> a small vial of Mercury and that my arm showed no resistance to his

pushing

> it down while the vial was on my stomach. I honestly can't remember if he

> told me to resist while the vial was there.

PJ replies:

I have been to a chiropractor who did these types of tests. I sort of

believed him until he asked me about when my arthritis started while pushing

on my arm. I said, " When my first child was stillborn " and my arm dropped.

He immediately decided that my arthritis was psychological in nature, not a

physical disease. I believed him because my arm lost power. I no longer

believe this at all. I think therer are many other possible explanations

for both phenomenon. Besides who decides how much strength drops at any

given moment of his exerting pressure? It's not like he has an accurate

gage there?

>

> 4. He suggested auto hemo therapy (injections of my own blood in my

> buttocks), saying it would make me feel great for 5 or 6 days. i told him

> I wanted to hold off until I can study the procedure.

>

> 5. He wanted to give me shots of Lidocaine in two pressure points on my

> shoulders, saying that the injections would stop my nagging cough. I

> decided to also hold off on that.

>

> 6. I was given a hair analysis test kit and a stool tet kit to take home

to

> complete and mail to them. Those I will do!

PJ replies:

Maybe on these too. The doctor I saw in California does blood tests for

vitamin and mineral deficiencies at SpectraCell Lab which I think is located

in Dallas. They were covered by my insurance which was nice.

>

> 7. he wants me to return on Sept.22 for chelation intrevenous therapy to

> see how much metal is excreted in my urine. I haven't quite decided

> whether I'll do this. I need your imput!

PJ replies:

I am on a list with someone who became extremely ill from chletation therapy

of a certain type. I will try to get more details on this one. I hear

people who claim chelation helps them, but I also hear stories of people who

get sick from certain types. It is really scary to me to have anything

injected into blood vessels.

>

> 8. He wants me to get a panarex x-ray of my teeth and to let their

> radiologists interpet them.

PJ suggests:

Maybe get the xrays done by a really good endontist, sort of a second

opinion on this.

>

September 14, 1999

Hi Joyce! Geoff Crenshaw here.

Thought maybe a little chiming in would be apropos...

> From: Joyce <hiattruc@...>

>

> Hi Group,

>

> well, the day finally arrived for my appointment with the Great Smoky

> medical Center doctor. I knew to expect something different from

> mainstream but I'm throughly confused about the tests and treatments

> suggested by the doctor.

>

> 1. He said that there is a red stripe in my mouth that shows mercury

> sensitivity.(I have 10 Amalgram fillings and one root canal.) He said the

> root canal was the worst thing anyone could have and suggested it be

removed.

Right. The root canal procedure commonly traps bacterium in the blood rich

area of the tooth & root, which now has a wonderful big hole in it where the

nerve used to be. The holes in the teeth are filled with a nonporous

substance, however, tooth structure is akin to a sponge except with much

smaller openings. The openings are so small and the area so rich that it is

not particularly rare for infections and chronic disorders to follow from

these even years or decades later, growing in an area here many body cells

cannot enter.

> 2. He said my reflexes also showed Merxury problems.

Interesting comment. I wonder just what sort of reflex is speficially

altered, and in what way, by mercury toxicity.

> 3. While lying flat, he told me to hold up my right arm and to try to

> resist his trying to push it down. during that test, I was aware that he

> laid something on my stomach but he didn't tell me until later that it was

> a small vial of Mercury and that my arm showed no resistance to his

pushing

> it down while the vial was on my stomach. I honestly can't remember if he

> told me to resist while the vial was there.

The Great Smokies people are considered amongst the best in the nation. They

are not nest featherers nor self-indulgent. The test you describe is one of

several common ways to assess your body's energy field via introduction of a

foreign material. Western medicine is just now being forced to admit this is

valid, however they still do not understand why. For a full discussion on

this issue you will need to spend some time (months - years) in the study of

Chinese medicine and the body chi.

Short answer - it does work, but like all things (e.g., the chiropractor

mentioned n another post) can be misuesd and abused.

An interesting note is that this is also an *extremely* reliable way to

determine what food stuffs and supplements your body NEEDS, i.e., which ones

impart energy to you vs. taking it from you. A common similarity to this

test is one with which many people ar familiar... they eat ice cream (or

some other food) and a half hour later are falling asleep. That's because

the food is " taking " energy vs. " giving " energy.

You should have no qualms about going along with this fellow so far.

> 4. He suggested auto hemo therapy (injections of my own blood in my

> buttocks), saying it would make me feel great for 5 or 6 days. i told him

> I wanted to hold off until I can study the procedure.

This sounds very much like what is used by the US (and other) Olympic Teams.

Auto Hemo Therapy increases the quantity of red blood cells in free

circulation, thereby giving you increased oxygen carrying capacity. It does

work and indeed, takes about 4-6 days for the production to even out against

the added capacity. As long as it's done right (clean, etc.) there's no

downside except the, well, the, ahem... " down " side.

> 5. He wanted to give me shots of Lidocaine in two pressure points on my

> shoulders, saying that the injections would stop my nagging cough. I

> decided to also hold off on that.

Another good move here. Lidocaine is used to break up lesions, scar tissues,

etc. and restore the natural kinetic energy flow of the body (chi). Commonly

used in Europe and by highly trained plastic surgeons here in the US, it is

often injected in fresh scar tissue to prevent and/or break up the " roping "

associated the cheloids.

So far, this guy, though his procedures are foreign to your " allopathy

trained " senses, is right on the money. That is one of the major drawbacks

to our " western allopathic medicine " . We as consumers are so thoroughly

indoctrinated in shots & surgery we cringe from the thought of other

methods.

> 6. I was given a hair analysis test kit and a stool tet kit to take home

to

> complete and mail to them. Those I will do!

Good move - not too messy either. Be careful to note ALL things used in your

hair including shampoos, conditioners, sprays, colors, detanglers, soaps,

scents, etc.

> 7. he wants me to return on Sept.22 for chelation intrevenous therapy to

> see how much metal is excreted in my urine. I haven't quite decided

> whether I'll do this. I need your imput!

Chelation therapy is the first line of treatment outside the US for vein and

artery blockages. Here the only people who use it commonly are the heart

surgeons who do NOT tell their patients about it. However... and this is

worth noting for you, chelation therapy IS the recognized method of removing

heavy metals in the US and is specifically recommended for that. Most common

US medical use: lead poisoning.

Another good move.

Beware, however, chelation therapy can be quite fatiguing and should be done

slowly over a period of several months. Once every two weeks or so is about

tops for most folks to handle comfortably. The more frequently you do it,

the higher the risk you run of getting severly fatigued and from that

fatigure all sorts of bad things can happen, including RA flares.

Prior to chelation eat a healthy meal (as in a couple of hours prior - not

" just " prior) and take some light high-carb type snacks with you. As always,

drink plenty of WATER. It's best to have a driver as the therapy is normally

fatiguing. The chelate, usally EDTA, should be administered IV in sterile

water, not saline nor ringers, and can (and usually is by those most

familiar with its administration) be punched up at the tail end with a

vitamin boost added to the IV solution.

> 8. He wants me to get a panarex x-ray of my teeth and to let their

> radiologists interpet them.

Panarex is the newest sort of x-ray. These machines, while new and obviously

expensive, use about 1%, that is 1/100th, of the radiation used by

traditional dental x-ray machines of only 5-6 years ago. You are placed in a

brace and the unit circles you taking a 180 degree x-ray of your complete

jaw, thus the name Pan-a-rex. This x-ray is then digitized into a computer

where the resolution and output are far superior to any film x-rays ever

done. The can be printed on plain paper by laser, output to film, blown up,

manipulated, basically anything one would expect with image manipulation to

a pixel level. They are also ready instantly - no waiting.

Hot stuff and very, very good.

> Group, I would appreciate any thoughts or feelings you have on the above

> info. I wonder if this is legitimate or just way out in left field.

Not only is it legitimate, it is anything but left field -- this is cutting

edge, holistic medicine at it's western best. Fully aware of all body

systems, the environment, body energy flows and interruptions, and making

use of the best of new and old technologies. It only has one problem...

> By the way, it is quite expensive!

That's it! That's the one MAJOR drawback. And oftentimes it is NO covered by

insurance. It's cheap to get a quack to pretend he knows what he's doing

with these things. It's quite another thing altogether to get people who

know their stuff, and the folks at Great Smokies do.

If your purse can handle it, you should be on the road to far better health

when you leave them.

Regards,

Geoff Crenshaw, ACC -----------------------

Captain Cook's Cruise Center ** Usual Disclaimers **

-----------------------

Religion: Man's attempt to discover God

Christianity: God's offer to save humankind

January 22, 2003

These are my suggestions:

First, are your kids making good progress with your children. If

yes, who cares what the method it. It's working.

Second, if they aren't making progress, then look for a new

therapist. Who cares if your current therapist is an " expert " . I'd

call around and talk to other therapist. It won't hurt to make a

few phone calls. I'd ask how they treat apraxia. You can always go

one time to a therapist that you like on the phone.

Good luck.

Suzi

> Hi everyone,

>

> After the Kaufman workshop, I was totally convinced Maddie has

apraxia and

> Luke 80% sure.

>

> I finally got in touch with the EI coordinator, and she says our

SLP is THE

> expert in the county on apraxia!!!! Our SLP is telling me they do

NOT have

> apraxia! I should also note that every single doctor the EI

coordinator

> has recommended to me has turned out to be a dud.

>

> Can I be this wrong? Should I just " wait and see " what happens,

meanwhile

> try the Kaufman cards and what I learned at the workshop on my

own? How

> can she be an expert if she doesn't even know the Kaufman method

exists and

> thinks Prompt is the only way to treat kids with apraxia?

>

> I'm so confused....I'm so sorry to be bothering you all with this

again!

> Wendi

January 22, 2003

Hi Wendi,

Very frustrating indeed. My son was diagnosed at 3 with apraxia. His

private SLP said he had it and a neuroligist based on his symptons

said he " probably " was apraxic. Then the school SLP did her

evaluation and was and is still convinced he does not have it. At

first I was very bothered by this thinking like you that he wasn't

going to get the right therapy. To the contrary the school SLP has

been wonderful with him. She chooses not to call it apraxia but she

was successful with her combination of various techniques whether

tactile visual or whatever.

If she is PROMPT trained ( you can call PROMPT to see if she is

certified which is a 3 part process where from what I understand

Deborah Hayden the founder observes for the last phase) then she

probably is well versed in apraxia. Why not have a frank discussion

with her to see why she doesn't think your kids are. In my son's case

he is not a classic apraxic where he gropes for words. However he

exhibits so many other signs. The other issue may be which I found is

that EI tends to not " offer " a diagnosis especially since apraxia is

considered to be neurological. However the AM. Speech and Hearing

recognizes that those SLP's experienced in apraxia can diagnose.

The bottomline is that whether they have it or not they get the right

therapy.

Also, the Kaufman cards cannot hurt so why not use them. Maybe your

SLP will see how they work.

denise

--- In , Wendi Sotis <wsotis@m...>

wrote:

> Hi everyone,

>

> After the Kaufman workshop, I was totally convinced Maddie has

apraxia and

> Luke 80% sure.

>

> I finally got in touch with the EI coordinator, and she says our

SLP is THE

> expert in the county on apraxia!!!! Our SLP is telling me they do

NOT have

> apraxia!

January 22, 2003

Wendi and : I, too, have been down the " diagnosis " road also.

When , then age 2 was diagnosed with verbal apraxia, we started a

course of treatment specifically for apraxia. My EI service coordinator

got me in touch with my current therapy group and away we went. However,

several months later, the SLP told me that he didn't see apraxia with

for the same reason mentioned below.....he did not grope for words.

I asked if that " groping " was more consistent with oral apraxia....but he

didn't know.

Regardless, they (and I) agreed to call it an expressive language delay for

now and to just work with him in developing his language/speech skills.

He has done wonders with this group and we continue to see improvements.

While I have finally decided not to get hung up on the diagnosis, I am

still nervous about his 3 year evaluation next week, to see that they call

his delay.

Good luck! Kim

January 22, 2003

Hi Wendi!

As Kaufman told me -the Kaufman cards are good for any late

talker and " weed out the men from the boys " What she meant is that

a child with a simple delay will progress quickly through the word

hierarchy on the backs of the cards to say the words correctly -

while the apraxic children will take longer and will require the

word bridges the cards provide. I love the Kaufman technique -

PROMPT -oral motor therapy -multi sensory therapies -OT -Fast For

Word -the right Omega 3/6 EFAs -whatever works for my boys I love.

Doesn't mean what works for one child will work for another -no

matter what the diagnosis. The right diagnosis however will provide

you will a better idea of appropriate therapies.

Knowledge will both make you both less confused -and more unsure.

The more your learn -the more questions you'll have -the more that

you'll know that we need to find out the answers through clinical

research -and the less stressing the hodge podge diagnosis's you'll

get along the way will bother you. All that will matter is all that

matters -find the most appropriate ways to help your child no matter

why he's a late talker. Why do you think we named The Late Talker

book The Late Talker? It's the only name that describes almost all

of our children -and it's what almost all of us heard and thought

that our children " just " were.

A good therapist -no matter how good -PROMPT or Kaufman or

otherwise -can't work with every child -children and impairments are

unique -and in addition -at times even with the right therapy -it

may not be the right therapist -chemistry could be off -or your

child may be that day. Your child just may not " click " with the expert

most other children do click with. Of course some therapists are

pretty darn close to being perfect! Unless you want to fly to see

one of the more well known therapists -a therapist that has a good

reputation through your local support group -or from other parents

in your area in this group is a good place to start for a second

opinion.

Not all SLP's agree on the exact definition of what apraxia is -or

what PDD is -or what autism is -which is why so many of our children

are given the flavor of the month diagnosis depending upon what

country/state we live in and what type of professional we take our

child to see. All will agree on " severe expressive language delay "

which I'm sure all of us heard at some point. It's the easy way out

diagnosis. Well maybe not all will agree on that either -because

some will argue " It's not a severe expressive language delay this

child has -it's a severe expressive verbal delay " but you get the

point...there is no one answer -only different days and different

therapists and mostly different opinions. Listen and keep track of

them all -buy a file cabinet and mark your child's name on it and

expect to buy another one in a year or two. Don't stress over it -

just file them to have them handy if needed -at least that you have

control over!

As and Suzi pointed out -it is frustrating for many of us if

we have to know the exact names of each diagnosis (because most of

our children have more than one even though we all at first thought

it was " just " late talker...like mild low tone -or mild DSI -or

maybe dysarthria with the apraxia -or dysfluency with the apraxia -

or SLI with the apraxia...and does the child have a " receptive "

(cognitive) delay -or was the professional not skilled at providing

the nonverbal child with the appropriate testing or was the child

not in the mood that day? And then the next exam could have the

professional saying " your child has above average receptive skills

and severe communication delays...we suspect apraxia " ) but I

digress.

I highly recommend continuing to try to find a neurodevelopmental MD

like Dr. Agin in NYC -or Dr. Chez in Chicago -or Dr. Ming in NJ -or

Dr. Herbert in MA -etc. etc. and put those evals together with the

other experts to see if all the experts agree. You want to find

medical, speech, and educational professionals that are

knowledgeable about various communication impairments -not just

one. This way you have a better chance of getting not only a

diagnosis -but the reason " why " the professional believes your child

does have ABC and does not have XYZ.

My experience is that the best professionals stay the most open

minded -and want to hear from you the parent. You are your child's

expert -and until more (ha ha -let's say " any large clinical "

instead) research is done on apraxia as to causes, treatments,

preventions, etc. the insight you provide to the professional is

critical in my opinion for providing the full picture of your

child. A nonverbal child may not act " normal " in public due to low

self esteem or frustration -but may act perfectly fine with those

that understand his nonverbal cues at home.

It's fine the EI SLP doesn't agree and believe your child (children)

not to be apraxic -however how can he/she be so 100% sure since

apraxia like autism presents so many ways - you could have a child

with verbal apraxia alone -or oral apraxia and verbal apraxia alone -

or verbal apraxia with some mild global apraxia of the body -or oral

and verbal apraxia with dysarthria. Also as you have noticed from

our grouplist we have parents with children with autism and apraxia -

CP and apraxia -Kabuki syndrome and apraxia -myelin disorders and

apraxia etc. etc.

Here is another " expert " story about an well known OT that specializes

in DSI. I just spoke to the parent who told me this OT said that all

of her child's " apraxia " signs -and " expressive language delays "

were not from apraxia but from sensory dysfunction -and even though

the child probably has DSI too -too being the key word here -this

child with only OT and behavior therapy alone without speech TX has regressed.

Bottom line is make sure your child's therapy is appropriate by

expecting progress. Try to find therapists and medical doctors

privately who you trust and respect who can oversee your child's

therapy provided through the State or school -with an outside eye. And

someone who can provide acceptable goals for your child's

progression.

You can fly your child all over until you get the right diagnosis -

but the only thing that matters is that your child's needs are being

met by a therapist or therapists and MD's who are open minded and

typically use multi-sensory approaches. The good thing about paying

for therapy yourself is that it's way easier to switch when your

child is not progressing. And one last thought -as many of us have

found -even with not the most experienced therapist -with the right

Omega 3/6 EFAs almost all of our children have surges.

=====

January 22, 2003

Hey Kim!

As Dr. Agin tells me -even children diagnosed with syndromes once on

the right EFAs appear to " rewire " and lose the " signs " of the

syndrome.

Your child -my child -and many of our children were fitting the

classic " signs " of apraxia before the EFAs. Look up the word

paradigm shift -and that's what we have going on now.

=====

January 22, 2003

! You are so right! That's a great explanation! Thanks. Kim

Hey Kim!

As Dr. Agin tells me -even children diagnosed with syndromes once on

the right EFAs appear to " rewire " and lose the " signs " of the

syndrome.

Your child -my child -and many of our children were fitting the

classic " signs " of apraxia before the EFAs. Look up the word

paradigm shift -and that's what we have going on now.

=====

January 23, 2003

Wendi -

I was also at the workshop (I came in late to lunch!). I have a 4 1/2 year

old son with apraxia. His therapists were there with me (they are prompt

certified, have been using Kaufman cards, do myofascial release, tons of oral

motor, etc). I also think my third son who is 2 1/2 has apraxia. His

current EI therapist is great and she thinks he doesn't but I only trust one

person to make the diagnosis...Dr. Marilyn Agin. I am bringing my older son

for a reevaluation and my 2 1/2 year old to be evaluated in March.

I love her and think you can trust her 100% as to whether or not your

children are apraxic.

Email me directly if you want to " talk " .

Lynaugh

January 23, 2003

I've heard of some of the specialists mentioned below several times ... are

there any tips on how to find/contact/get in to see them? Specifically Dr.

Ming or Dr. Agin. My daughter is 2 1/2 and we are already on a couple of

6-month waiting lists for the 'good' developmental peds in town, but I'd

prefer to have her see a apraxia specialist if I can arrange it.

Thanks in advance

Mom to Ellie, age 2 1/2 (apraxic, dysarthic, hypotonic)

[ ] Re: totally confused

> Hi Wendi!

>

> As Kaufman told me -the Kaufman cards are good for any late

> talker and " weed out the men from the boys " What she meant is that

> a child with a simple delay will progress quickly through the word

> hierarchy on the backs of the cards to say the words correctly -

> while the apraxic children will take longer and will require the

> word bridges the cards provide. I love the Kaufman technique -

> PROMPT -oral motor therapy -multi sensory therapies -OT -Fast For

> Word -the right Omega 3/6 EFAs -whatever works for my boys I love.

> Doesn't mean what works for one child will work for another -no

> matter what the diagnosis. The right diagnosis however will provide

> you will a better idea of appropriate therapies.

>

> Knowledge will both make you both less confused -and more unsure.

> The more your learn -the more questions you'll have -the more that

> you'll know that we need to find out the answers through clinical

> research -and the less stressing the hodge podge diagnosis's you'll

> get along the way will bother you. All that will matter is all that

> matters -find the most appropriate ways to help your child no matter

> why he's a late talker. Why do you think we named The Late Talker

> book The Late Talker? It's the only name that describes almost all

> of our children -and it's what almost all of us heard and thought

> that our children " just " were.

>

> A good therapist -no matter how good -PROMPT or Kaufman or

> otherwise -can't work with every child -children and impairments are

> unique -and in addition -at times even with the right therapy -it

> may not be the right therapist -chemistry could be off -or your

> child may be that day. Your child just may not " click " with the expert

> most other children do click with. Of course some therapists are

> pretty darn close to being perfect! Unless you want to fly to see

> one of the more well known therapists -a therapist that has a good

> reputation through your local support group -or from other parents

> in your area in this group is a good place to start for a second

> opinion.

>

> Not all SLP's agree on the exact definition of what apraxia is -or

> what PDD is -or what autism is -which is why so many of our children

> are given the flavor of the month diagnosis depending upon what

> country/state we live in and what type of professional we take our

> child to see. All will agree on " severe expressive language delay "

> which I'm sure all of us heard at some point. It's the easy way out

> diagnosis. Well maybe not all will agree on that either -because

> some will argue " It's not a severe expressive language delay this

> child has -it's a severe expressive verbal delay " but you get the

> point...there is no one answer -only different days and different

> therapists and mostly different opinions. Listen and keep track of

> them all -buy a file cabinet and mark your child's name on it and

> expect to buy another one in a year or two. Don't stress over it -

> just file them to have them handy if needed -at least that you have

> control over!

>

> As and Suzi pointed out -it is frustrating for many of us if

> we have to know the exact names of each diagnosis (because most of

> our children have more than one even though we all at first thought

> it was " just " late talker...like mild low tone -or mild DSI -or

> maybe dysarthria with the apraxia -or dysfluency with the apraxia -

> or SLI with the apraxia...and does the child have a " receptive "

> (cognitive) delay -or was the professional not skilled at providing

> the nonverbal child with the appropriate testing or was the child

> not in the mood that day? And then the next exam could have the

> professional saying " your child has above average receptive skills

> and severe communication delays...we suspect apraxia " ) but I

> digress.

>

> I highly recommend continuing to try to find a neurodevelopmental MD

> like Dr. Agin in NYC -or Dr. Chez in Chicago -or Dr. Ming in NJ -or

> Dr. Herbert in MA -etc. etc. and put those evals together with the

> other experts to see if all the experts agree. You want to find

> medical, speech, and educational professionals that are

> knowledgeable about various communication impairments -not just

> one. This way you have a better chance of getting not only a

> diagnosis -but the reason " why " the professional believes your child

> does have ABC and does not have XYZ.

>

> My experience is that the best professionals stay the most open

> minded -and want to hear from you the parent. You are your child's

> expert -and until more (ha ha -let's say " any large clinical "

> instead) research is done on apraxia as to causes, treatments,

> preventions, etc. the insight you provide to the professional is

> critical in my opinion for providing the full picture of your

> child. A nonverbal child may not act " normal " in public due to low

> self esteem or frustration -but may act perfectly fine with those

> that understand his nonverbal cues at home.

>

> It's fine the EI SLP doesn't agree and believe your child (children)

> not to be apraxic -however how can he/she be so 100% sure since

> apraxia like autism presents so many ways - you could have a child

> with verbal apraxia alone -or oral apraxia and verbal apraxia alone -

> or verbal apraxia with some mild global apraxia of the body -or oral

> and verbal apraxia with dysarthria. Also as you have noticed from

> our grouplist we have parents with children with autism and apraxia -

> CP and apraxia -Kabuki syndrome and apraxia -myelin disorders and

> apraxia etc. etc.

>

> Here is another " expert " story about an well known OT that specializes

> in DSI. I just spoke to the parent who told me this OT said that all

> of her child's " apraxia " signs -and " expressive language delays "

> were not from apraxia but from sensory dysfunction -and even though

> the child probably has DSI too -too being the key word here -this

> child with only OT and behavior therapy alone without speech TX has

regressed.

>

> Bottom line is make sure your child's therapy is appropriate by

> expecting progress. Try to find therapists and medical doctors

> privately who you trust and respect who can oversee your child's

> therapy provided through the State or school -with an outside eye. And

> someone who can provide acceptable goals for your child's

> progression.

>

> You can fly your child all over until you get the right diagnosis -

> but the only thing that matters is that your child's needs are being

> met by a therapist or therapists and MD's who are open minded and

> typically use multi-sensory approaches. The good thing about paying

> for therapy yourself is that it's way easier to switch when your

> child is not progressing. And one last thought -as many of us have

> found -even with not the most experienced therapist -with the right

> Omega 3/6 EFAs almost all of our children have surges.

>

> =====

>

January 23, 2003

Hi (great name!)

Dr. Marilyn Agin -was my life-line for both of by boys as their

neuro -developmental pediatrician -I don't know what we would have

done without her. She helped us understand -help -and advocate for

our children -and she also helped oversee the CHERAB Foundation as

the Medical Director in the early stages and used to spend hours

upon hours staying up to the wee hours of the morning giving up

sleep answering emails after emails from the many parents before we

stopped sharing her email. She has such a huge heart and wants so

much to help -just like all good doctors. She is also my co-author

of The Late Talker book and I can't say enough good things about

her. Out of all the doctors I recommend -she is one of the few

professionals out there that just about 100% that see her love/rave about her -

just ask those that have. Due to the fact that Dr. Agin was a

speech pathologist for seven years before medical school -she has a

unique understanding of neurologically based multi faceted

communication disorders such as autism and apraxia -however as the

Medical Director for NYC's Early Intervention Department (the

largest in the country) -she is an authority that lectures on all

types of impairments and disorders in children and is very open

minded and respects and listens to the concern of the parents. She

is also knowledgeable about EFAs.

Dr. Agin's private practice number 212- 274- 9180

her Early Intervention number if you are in NYC is 212- -219 - 5171

I don't have Dr. Ming's number handy since my move -but you could

just call University of Medicine and Dentistry of New Jersey / New

Jersey Medical School (UMDNJ) at 973-972-5208 and I'm sure they will

connect you.

This is Dr. Ming's email : Pediatric Neurology/Autism Xue

Ming,MD,PhD Mingxu@... Dr. Ming specializes in autism -

however is very interested in the apraxic population and quite

knowledgeable about the benefits of EFAs -she studied under Dr. Hugo

Moser (our dinner speaker at The First Apraxia Conference hosted by

CHERAB -he was the doctor portrayed in Lorenzo's Oil and he led the

recent trials on the oil!) When I was called into UMDNJ to present

about what my views are on apraxic children/ and the remyelinating

qualities of EFAs, and why this may be helping our children (almost

100%) -Dr. Ming was one of the doctors I spoke with -with great

interest. She is also quite impressed with one of our member's

children who had myelin problems that are now resolved since on

ProEFA. That parent is Caroline IlGrande -who " used " to be a

skeptical attorney when it came to EFAs too -and it was amazing MRI

changes which I'd rather Caroline explains since I may not get it

all right. I'm not sure if she has shared all here yet. Caroline

posts her first and last name so you can search (if I spelled it

right!)

Caroline - who I just spoke to the other night LOVES Dr. Ming for

her apraxic daughter (who is not autistic) and if you search the

archives you can probably find Dr. Ming's number since I believe

Caroline posted it once -or maybe Caroline will see this and post it

again!

=====

January 23, 2003

Hi Everyone,

I am wondering how I can go about finding a reputable Neurodevelopmental

Pediatrician in my neck of the woods. I am nowhere near NY or NJ, or any major

city for that matter. We are not in a great financial position, so traveling

too far is out of the question. Is there any way to search by region?

We have had an SLP dx my son as Verbally Dyspraxic, but I would like to follow

up with an MD, and I don't have much faith in our Dr.

Also, is the majority of the population here using ProEFA, or is there another

formulation that works equally well?

TIA,

Kathleen & Owen

----- Original Message -----