Re: Neuro exam -- big disappointment

[Guest guest]

Hi -

I would suggest locating a developmental pediatrician. And I'd call

first. You'd be surprised what the nurses will tell you if you call

and are really nice and tell them that " you've been the route of

neuros, regular peds, etc. and you just want some answers... " I

don't recall where you are, but in Cinci here a trip to a dev ped

gets you an initial visit where they decide what other appts you

should make (OT, PT, SLP, MRI, Audiology, nutrition (yep - we did

it), genetics, bloodwork, etc.). If you post your general area, I

bet you'd get some good suggestions of whom to see where. And, more

importantly, where and whom NOT to see (including here in Cinci).

If you're dealing with " pure apraxia " and all you want is the blood

tests, could you just ask your regular ped to order the tests??

>

> We took our 31 mos old son to see a neurologist today. Our

> pediatrician referred us when I asked about the blood work

> described to us and about testing for Fragile X. The neurologist

> seemed pretty put out that we were there for something

> " developmental " and suggested that we bring our son to a

> psychiatrist or psychologist (my son has some " red flag " behaviors

> in addition to the not talking).

>

> The doctor was not interested in doing any blood work or further

> testing (mainstream or otherwise) because he said such tests

produce

> a " low yield " in terms of answers. He thinks restricted diets

> (GFCF) and chelation are a " bunch of garbage. " He didn't mind

that

> we had our son on fish oils and Vit E though. He said it couldn't

> hurt.

>

> I specifically asked him about apraxia (which I thought was a

> neurological disorder) and he said my son has symptoms consistent

> with apraxia but that he couldn't diagnose that. He said my son's

> OT and SLPs should make that call.

>

> I'm not sure what to do next. I guess I need to bring my son to a

> psychiatrist (and maybe myself to one while I'm at it), but then

who

> can I bring him to regarding whether or not he has apraxia? In

> spite of what the neuro said, my son's therapists don't feel it is

> their place to make medical diagnoses. And then there's the blood

> work suggested, I suppose I could find a DAN doctor to do

> it, but then I will have to pay out of pocket and I have heard it

is

> very expensive. Maybe I should just tinker with the supplements

> more and add Carnaware just in case? I HATE dealing with the

> doctors on this because I just don't feel I can explain myself

well

> enough when it comes to all these tests, and it is so emotional to

> have someone tell you your child has a major disorder that getting

> past that to talk about further testing … well it just didn't work

> very well.

>

> I just really feel like I failed.

>

[Guest guest]

I feel your pain and frustration..before going to a DAN doctor and have to

pay for the tests yourself..find another pediatrician.there are some young

ones age wise that is.. that may be more open minded.. It just is not

fair..I wish there was an easier way to find out how a parent can help their

child.

's Mom

_____

From:

[mailto: ] On Behalf Of myjunkytrash

Sent: Tuesday, October 10, 2006 11:55 PM

Subject: [ ] Neuro exam -- big disappointment

We took our 31 mos old son to see a neurologist today. Our

pediatrician referred us when I asked about the blood work

described to us and about testing for Fragile X. The neurologist

seemed pretty put out that we were there for something

" developmental " and suggested that we bring our son to a

psychiatrist or psychologist (my son has some " red flag " behaviors

in addition to the not talking).

The doctor was not interested in doing any blood work or further

testing (mainstream or otherwise) because he said such tests produce

a " low yield " in terms of answers. He thinks restricted diets

(GFCF) and chelation are a " bunch of garbage. " He didn't mind that

we had our son on fish oils and Vit E though. He said it couldn't

hurt.

I specifically asked him about apraxia (which I thought was a

neurological disorder) and he said my son has symptoms consistent

with apraxia but that he couldn't diagnose that. He said my son's

OT and SLPs should make that call.

I'm not sure what to do next. I guess I need to bring my son to a

psychiatrist (and maybe myself to one while I'm at it), but then who

can I bring him to regarding whether or not he has apraxia? In

spite of what the neuro said, my son's therapists don't feel it is

their place to make medical diagnoses. And then there's the blood

work suggested, I suppose I could find a DAN doctor to do

it, but then I will have to pay out of pocket and I have heard it is

very expensive. Maybe I should just tinker with the supplements

more and add Carnaware just in case? I HATE dealing with the

doctors on this because I just don't feel I can explain myself well

enough when it comes to all these tests, and it is so emotional to

have someone tell you your child has a major disorder that getting

past that to talk about further testing . well it just didn't work

very well.

I just really feel like I failed.

[Guest guest]

Some observations and suggestions from my own experience:

I was told to go to a neuro-developmental pediatrician, but if they exist,

they're hard to find. I took him to a developmental pediatrician instead. Ask in

a new thread if anyone knows of a developmental pediatrician in your area who is

familiar with apraxia.

There's an order that this world requires, and sometimes violating it gets you

the response you just got. After you go see the developmental pediatrician, you

may get a diagnosis that requires you to go to a neurologist next. That is our

next step with my son. He's almost three and has only just been diagnosed with

hypotonia. Apparently, this is the reason why he has trouble speaking. It also

explains why he's had minor problems all along (milk coming out of his nose

while drinking, gagging on soft foods). Most of these problems his pediatrician

dismissed as unimportant, but were in fact signs of the hypotonia. But other

than these symptoms, the hypotonia was so slight that his pedi missed it.

The hypotonia, however, could be a symptom of something much larger. Now we

need to go to the neurologist to make sure, and after that, a geneticist may be

next. Another thing you may need to know is that some professionals don't like

to give the apraxia diagnosis until the child is at least three. This can be

problematic as s & l therapy needs to start as soon as it can, and insurance won't

pay unless the diagnosis is clearly " medical " , as opposed to " developmental " .

[Guest guest]

I'm so sorry to hear about your experience. It makes me so sad when doctors

dismiss anything parents suggest as " a bunch of crap " rather than engaging a

parents' concerns. There are ways of not agreeing with something that are not

dismissive and still encourage discussion and debate. Apparently this doctor

missed that lesson in medical school!

I am not sure where you in the country, but we saw a pediatric neurologist

recommended to us by Dr Agin, and our experience with him was entirely different

from what you describe. And yes, he did diagnose apraxia (or, technically,

confirm Dr Agin's diagnosis of apraxia), in addition to hypotonia and

developmental delays. My son was 23 months at the time.

If you're anywhere near Mountainside, New Jersey, you might consider seeing him.

His name is Abba Cargan, and my husband and I both really liked him. In

addition to being very thorough and very clear about everything he was looking

at and finding, he also took a " whole child " approach and talked to my husband

and me about many issues related to 's development, including the

importance of having him swim as an activity once he is ready and how to choose

the right schools for our him as well as when the right time would be to send

him (in 's case, he recommended not holding him back, as we had been

thinking we would do). We were very impressed.

I don't have his number off-hand but I have googled it before with no problem.

It took about six months to get an appt with him, but the wait was well worth

it. And I have had cause to call a couple of times since and he has been as

thorough and caring on the phone as he was in person too.

Just a suggestion.

Good luck,

(mom of , 2, and Gracie, 4)

[ ] Neuro exam -- big disappointment

We took our 31 mos old son to see a neurologist today. Our

pediatrician referred us when I asked about the blood work

described to us and about testing for Fragile X. The neurologist

seemed pretty put out that we were there for something

" developmental " and suggested that we bring our son to a

psychiatrist or psychologist (my son has some " red flag " behaviors

in addition to the not talking).

The doctor was not interested in doing any blood work or further

testing (mainstream or otherwise) because he said such tests produce

a " low yield " in terms of answers. He thinks restricted diets

(GFCF) and chelation are a " bunch of garbage. " He didn't mind that

we had our son on fish oils and Vit E though. He said it couldn't

hurt.

I specifically asked him about apraxia (which I thought was a

neurological disorder) and he said my son has symptoms consistent

with apraxia but that he couldn't diagnose that. He said my son's

OT and SLPs should make that call.

I'm not sure what to do next. I guess I need to bring my son to a

psychiatrist (and maybe myself to one while I'm at it), but then who

can I bring him to regarding whether or not he has apraxia? In

spite of what the neuro said, my son's therapists don't feel it is

their place to make medical diagnoses. And then there's the blood

work suggested, I suppose I could find a DAN doctor to do

it, but then I will have to pay out of pocket and I have heard it is

very expensive. Maybe I should just tinker with the supplements

more and add Carnaware just in case? I HATE dealing with the

doctors on this because I just don't feel I can explain myself well

enough when it comes to all these tests, and it is so emotional to

have someone tell you your child has a major disorder that getting

past that to talk about further testing . well it just didn't work

very well.

I just really feel like I failed.

[Guest guest]

My son's regular ped ordered the blood work...she checked for fragile X as well

as other genetic problems. It was simple. I don't undestand why your ped won't

just order the test....it is a good way to rule out other things that may be

going on. Try getting a new ped and see what happens. The test was short (just

drew a little bit of blood) and it put my mind at ease.

Good luck!!! Let me know what happens.

Jill (Lucas 3.9)

[Guest guest]

When I asked my pediatrician about the blood work and testing he

referred me to the neuro. He's nice and I guess I could push him but

I know he will be reluctant. It would be nice not to have to " arm

wrestle " over it, just because my confidence in being able to talk

intelligently about all of this is shaky. I'm looking for someone

knowledgeable to guide me through the process. I remember someone

posting that they got their ped to order the tests but then he didn't

know how to interpret them. These doctors assume you are in deep

denial and desperate and I just think they are dismissive because of

this. It's almost like, " oh well, another PDD/ASD case, have a nice

life! " I live in the New Orleans area by the way if anyone has any

thoughts.

Thanks to everyone responding to me on this.

[Guest guest]

Hi -

I would suggest locating a developmental pediatrician. And I'd call

first. You'd be surprised what the nurses will tell you if you call

and are really nice and tell them that " you've been the route of

neuros, regular peds, etc. and you just want some answers... " I

don't recall where you are, but in Cinci here a trip to a dev ped

gets you an initial visit where they decide what other appts you

should make (OT, PT, SLP, MRI, Audiology, nutrition (yep - we did

it), genetics, bloodwork, etc.). If you post your general area, I

bet you'd get some good suggestions of whom to see where. And, more

importantly, where and whom NOT to see (including here in Cinci).

If you're dealing with " pure apraxia " and all you want is the blood

tests, could you just ask your regular ped to order the tests??

>

> We took our 31 mos old son to see a neurologist today. Our

> pediatrician referred us when I asked about the blood work

> described to us and about testing for Fragile X. The neurologist

> seemed pretty put out that we were there for something

> " developmental " and suggested that we bring our son to a

> psychiatrist or psychologist (my son has some " red flag " behaviors

> in addition to the not talking).

>

> The doctor was not interested in doing any blood work or further

> testing (mainstream or otherwise) because he said such tests

produce

> a " low yield " in terms of answers. He thinks restricted diets

> (GFCF) and chelation are a " bunch of garbage. " He didn't mind

that

> we had our son on fish oils and Vit E though. He said it couldn't

> hurt.

>

> I specifically asked him about apraxia (which I thought was a

> neurological disorder) and he said my son has symptoms consistent

> with apraxia but that he couldn't diagnose that. He said my son's

> OT and SLPs should make that call.

>

> I'm not sure what to do next. I guess I need to bring my son to a

> psychiatrist (and maybe myself to one while I'm at it), but then

who

> can I bring him to regarding whether or not he has apraxia? In

> spite of what the neuro said, my son's therapists don't feel it is

> their place to make medical diagnoses. And then there's the blood

> work suggested, I suppose I could find a DAN doctor to do

> it, but then I will have to pay out of pocket and I have heard it

is

> very expensive. Maybe I should just tinker with the supplements

> more and add Carnaware just in case? I HATE dealing with the

> doctors on this because I just don't feel I can explain myself

well

> enough when it comes to all these tests, and it is so emotional to

> have someone tell you your child has a major disorder that getting

> past that to talk about further testing … well it just didn't work

> very well.

>

> I just really feel like I failed.

>

[Guest guest]

I feel your pain and frustration..before going to a DAN doctor and have to

pay for the tests yourself..find another pediatrician.there are some young

ones age wise that is.. that may be more open minded.. It just is not

fair..I wish there was an easier way to find out how a parent can help their

child.

's Mom

_____

From:

[mailto: ] On Behalf Of myjunkytrash

Sent: Tuesday, October 10, 2006 11:55 PM

Subject: [ ] Neuro exam -- big disappointment

We took our 31 mos old son to see a neurologist today. Our

pediatrician referred us when I asked about the blood work

described to us and about testing for Fragile X. The neurologist

seemed pretty put out that we were there for something

" developmental " and suggested that we bring our son to a

psychiatrist or psychologist (my son has some " red flag " behaviors

in addition to the not talking).

The doctor was not interested in doing any blood work or further

testing (mainstream or otherwise) because he said such tests produce

a " low yield " in terms of answers. He thinks restricted diets

(GFCF) and chelation are a " bunch of garbage. " He didn't mind that

we had our son on fish oils and Vit E though. He said it couldn't

hurt.

I specifically asked him about apraxia (which I thought was a

neurological disorder) and he said my son has symptoms consistent

with apraxia but that he couldn't diagnose that. He said my son's

OT and SLPs should make that call.

I'm not sure what to do next. I guess I need to bring my son to a

psychiatrist (and maybe myself to one while I'm at it), but then who

can I bring him to regarding whether or not he has apraxia? In

spite of what the neuro said, my son's therapists don't feel it is

their place to make medical diagnoses. And then there's the blood

work suggested, I suppose I could find a DAN doctor to do

it, but then I will have to pay out of pocket and I have heard it is

very expensive. Maybe I should just tinker with the supplements

more and add Carnaware just in case? I HATE dealing with the

doctors on this because I just don't feel I can explain myself well

enough when it comes to all these tests, and it is so emotional to

have someone tell you your child has a major disorder that getting

past that to talk about further testing . well it just didn't work

very well.

I just really feel like I failed.

[Guest guest]

What about a Speech and Language Pathologist? I believe that is who dx my son

with Apraxia.

Jan In Ca

myjunkytrash <myjunkytrash@...> wrote:

We took our 31 mos old son to see a neurologist today. Our

pediatrician referred us when I asked about the blood work

described to us and about testing for Fragile X. The neurologist

seemed pretty put out that we were there for something

" developmental " and suggested that we bring our son to a

psychiatrist or psychologist (my son has some " red flag " behaviors

in addition to the not talking).

The doctor was not interested in doing any blood work or further

testing (mainstream or otherwise) because he said such tests produce

a " low yield " in terms of answers. He thinks restricted diets

(GFCF) and chelation are a " bunch of garbage. " He didn't mind that

we had our son on fish oils and Vit E though. He said it couldn't

hurt.

I specifically asked him about apraxia (which I thought was a

neurological disorder) and he said my son has symptoms consistent

with apraxia but that he couldn't diagnose that. He said my son's

OT and SLPs should make that call.

I'm not sure what to do next. I guess I need to bring my son to a

psychiatrist (and maybe myself to one while I'm at it), but then who

can I bring him to regarding whether or not he has apraxia? In

spite of what the neuro said, my son's therapists don't feel it is

their place to make medical diagnoses. And then there's the blood

work suggested, I suppose I could find a DAN doctor to do

it, but then I will have to pay out of pocket and I have heard it is

very expensive. Maybe I should just tinker with the supplements

more and add Carnaware just in case? I HATE dealing with the

doctors on this because I just don't feel I can explain myself well

enough when it comes to all these tests, and it is so emotional to

have someone tell you your child has a major disorder that getting

past that to talk about further testing … well it just didn't work

very well.

I just really feel like I failed.

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

Get your email and more, right on the new .com

[Guest guest]

If you want routine nutritional testing that can be done through a lab

like CPL or Quest (which vit E and fatty acids can be), I would find

an osteopathic doctor who is on your insurance plan and go to that

person. Osteopaths are much more interested in nutritional solutions

(though YMMV). I doubt you will find a neurologist of dev ped who will

do that testing.

> >

> > We took our 31 mos old son to see a neurologist today. Our

> > pediatrician referred us when I asked about the blood work

> > described to us and about testing for Fragile X. The neurologist

> > seemed pretty put out that we were there for something

> > " developmental " and suggested that we bring our son to a

> > psychiatrist or psychologist (my son has some " red flag " behaviors

> > in addition to the not talking).

> >

> > The doctor was not interested in doing any blood work or further

> > testing (mainstream or otherwise) because he said such tests

> produce

> > a " low yield " in terms of answers. He thinks restricted diets

> > (GFCF) and chelation are a " bunch of garbage. " He didn't mind

> that

> > we had our son on fish oils and Vit E though. He said it couldn't

> > hurt.

> >

> > I specifically asked him about apraxia (which I thought was a

> > neurological disorder) and he said my son has symptoms consistent

> > with apraxia but that he couldn't diagnose that. He said my son's

> > OT and SLPs should make that call.

> >

> > I'm not sure what to do next. I guess I need to bring my son to a

> > psychiatrist (and maybe myself to one while I'm at it), but then

> who

> > can I bring him to regarding whether or not he has apraxia? In

> > spite of what the neuro said, my son's therapists don't feel it is

> > their place to make medical diagnoses. And then there's the blood

> > work suggested, I suppose I could find a DAN doctor to do

> > it, but then I will have to pay out of pocket and I have heard it

> is

> > very expensive. Maybe I should just tinker with the supplements

> > more and add Carnaware just in case? I HATE dealing with the

> > doctors on this because I just don't feel I can explain myself

> well

> > enough when it comes to all these tests, and it is so emotional to

> > have someone tell you your child has a major disorder that getting

> > past that to talk about further testing … well it just didn't work

> > very well.

> >

> > I just really feel like I failed.

> >

>

[Guest guest]

Oh, I lost my post... well here it is again.

You DIDN'T FAIL!!! YOU ARE JUST ON THE SUCKY PART OF THE

JOURNEY..one door closes and another opens.

I'm 5 months into this. I was doing the " waiting " thing ...

ears,professionals who know nothing... long/boring/not important now

I say (after spinning my wheels with Dr.'s and so called

professionals through this past 5 months) go directly to the DAN Dr.

Well, sort of, as a good one takes several months to get into. I

will be seeing Dr. DeMio in December. You can measure the

cost of tests until you are blue in the face. You have to remember

time is of the essence, our kids brains are developing and this is

truly a window of opportunity. Don't waste time trading 50.00

dollar bills.

Don't get hung up on the autism term, and how scary it is or

not...bottom line is our kids are neurologically damaged, deficient,

you choose a term. Apraxic kids and autistic kids have a lot of the

same physiology/biology and no 2 ASD kids present the same. Take

what you need and leave what doesn't apply.

Chelation...cross that bridge when you come to it. Learn about it

and be open minded. A hair analysis was the first thing I did when

I knew nothing and still " waiting " . I'm glad I got that now.. a

great tool but you also need someone who can interpret it properly

that is in my opinion, only a seasoned DAN Dr.

I highly suggest you read your head off... start with Children with

Starving Brains by Jacquelin McCandless, she also has a chat group

and is quite active on others as well. chelatingkids2 () are

the parents " in the know " , you will find that these are well

seasoned parents and may not really be what you are looking at but I

find the information very very informative. They are top notch,

active and have great archives to do further research. They are all

going to the brightest and best Dr.'s around the country. I read

several of the top suggested books all at the same time but

McCandless does a great job putting it in a comprehensive format.

Ok, you may have to go back and re read it when your head stops

spinning with all the new terminology. She talks about tests, the

ones you need, and those you don't and why.

Also, you should absolutely start the GF/CF diet. McCandliss talks

about this too, the reasons why. MANY parents have seen the most

gains from this intervention. Particularly if your kid has some

behaviors that are driving you nuts. It's all explained in the

book. And I can tell you, it seems overwhelming at first but it's

really not hard at all. Google it... Sourousi (spelling?) book

is a must read. At the very least, the biomeds that you are giving

your kid will have a better chance of doing more than making

expensive pee pee. It will heal the gut, even if you don't think

your kid has gut issues. The CF part is very important if your kid

has a long history of ear infections. Keep in mind, you may see

some bad behavior for about 2 - 3 weeks that may even include a

cold. Keep going and don't cheat!!! My mild mannered, lethargic

kid almost got kicked out of Montessori school when we started the

diet... seriously. But, the good news... after chronic, and I mean

chronic ear infections despite the tubes, not one sign of ear

infection in 5 months and we just got over a very bad cold without

(for the first time) the ears being included.

Choose a DAN Dr. based on how active they are NOT necessarily how

close to your home, (autismwebsite.com) MAKE SURE their bio shows

they are active and have gone to recent conferences - these

conferences are critical as their is a lot of new insights and you

want that info. You don't see them for every little thing and these

Dr.'s are accustomed to telephone consults and use email for

important information exchange. Let's see you get that with the ped

down the street. Yeah, right, you barely get his full attention for

a whole 15 minutes.

Ideally, you will be able to break away from the traditional ped

with the closed mind and find a Dr. locally who is naturally based,

you have to ask around. One big clue will be one that doesn't shove

immunizations down your throat, or, perhaps doesn't recommend them

at all. That is the person who will be a good " team " member

in " recovering " your child. They will be the go to person when your

kid has colds and then coordinate testing with your DAN.

Great advise I got from another Mother (who fully recovered 3 of her

4 children) is to (for the most part) keep your mouth shut when you

are faced with allopathic MD's also included are ST, OT, PT's unless

they are the up and commers...as they are more open and into the

newest techniques. And they won't give you that oh so

aggrevating " look " that often goes with eye rolling. Forget them,

take what you need be it speech therapy and don't talk about the

biomeds that you are doing. In fact,go as far as to let them take

all the credit for the gains. You will be far less frustrated...

keep your eye on the prize... your recovered child.

Finally, find a good way to keep a diary about your child. Include,

health, appetite, biomeds tried/stopped/changed, poop,

words/phrases, sleep patterns, behaviors like stimming

increased/decreased, therapies. If you attend your apt with a

seasoned DAN with all of this information, he/she will be able to

make sense of it and get to the root of your issues faster and the

better chance you have of a FULL recovery.

All of the above from recent experience, thousands of dollars and

precious time wasted. I am so ready to be treated with respect

rather than " another " hysterical, desperate parent. Dr. DeMio has a

kid with Autism, participates in DAN conferences and his practice is

dedicated to THE BIOMEDICINE OF Autism, Aspergers ADD/ADHD, OCD and

Developmental Disorders. I suspect we will be in the latter part...

developmental disorders catagory.

You SO DID NOT FAIL... YOU ARE WAY AHEAD OF THE GAME! HTH Let us

know how things progress

>

>

>

> I feel your pain and frustration..before going to a DAN doctor and

have to

> pay for the tests yourself..find another pediatrician.there are

some young

> ones age wise that is.. that may be more open minded.. It just is

not

> fair..I wish there was an easier way to find out how a parent can

help their

> child.

>

> 's Mom

>

>

>

> _____

>

> From:

> [mailto: ] On Behalf Of

myjunkytrash

> Sent: Tuesday, October 10, 2006 11:55 PM

>

> Subject: [ ] Neuro exam -- big disappointment

>

>

>

> We took our 31 mos old son to see a neurologist today. Our

> pediatrician referred us when I asked about the blood work

> described to us and about testing for Fragile X. The neurologist

> seemed pretty put out that we were there for something

> " developmental " and suggested that we bring our son to a

> psychiatrist or psychologist (my son has some " red flag " behaviors

> in addition to the not talking).

>

> The doctor was not interested in doing any blood work or further

> testing (mainstream or otherwise) because he said such tests

produce

> a " low yield " in terms of answers. He thinks restricted diets

> (GFCF) and chelation are a " bunch of garbage. " He didn't mind that

> we had our son on fish oils and Vit E though. He said it couldn't

> hurt.

>

> I specifically asked him about apraxia (which I thought was a

> neurological disorder) and he said my son has symptoms consistent

> with apraxia but that he couldn't diagnose that. He said my son's

> OT and SLPs should make that call.

>

> I'm not sure what to do next. I guess I need to bring my son to a

> psychiatrist (and maybe myself to one while I'm at it), but then

who

> can I bring him to regarding whether or not he has apraxia? In

> spite of what the neuro said, my son's therapists don't feel it is

> their place to make medical diagnoses. And then there's the blood

> work suggested, I suppose I could find a DAN doctor to do

> it, but then I will have to pay out of pocket and I have heard it

is

> very expensive. Maybe I should just tinker with the supplements

> more and add Carnaware just in case? I HATE dealing with the

> doctors on this because I just don't feel I can explain myself

well

> enough when it comes to all these tests, and it is so emotional to

> have someone tell you your child has a major disorder that getting

> past that to talk about further testing . well it just didn't work

> very well.

>

> I just really feel like I failed.

>

>

>

>

>

>

[Guest guest]

Some observations and suggestions from my own experience:

I was told to go to a neuro-developmental pediatrician, but if they exist,

they're hard to find. I took him to a developmental pediatrician instead. Ask in

a new thread if anyone knows of a developmental pediatrician in your area who is

familiar with apraxia.

There's an order that this world requires, and sometimes violating it gets you

the response you just got. After you go see the developmental pediatrician, you

may get a diagnosis that requires you to go to a neurologist next. That is our

next step with my son. He's almost three and has only just been diagnosed with

hypotonia. Apparently, this is the reason why he has trouble speaking. It also

explains why he's had minor problems all along (milk coming out of his nose

while drinking, gagging on soft foods). Most of these problems his pediatrician

dismissed as unimportant, but were in fact signs of the hypotonia. But other

than these symptoms, the hypotonia was so slight that his pedi missed it.

The hypotonia, however, could be a symptom of something much larger. Now we

need to go to the neurologist to make sure, and after that, a geneticist may be

next. Another thing you may need to know is that some professionals don't like

to give the apraxia diagnosis until the child is at least three. This can be

problematic as s & l therapy needs to start as soon as it can, and insurance won't

pay unless the diagnosis is clearly " medical " , as opposed to " developmental " .

[Guest guest]

I'm so sorry to hear about your experience. It makes me so sad when doctors

dismiss anything parents suggest as " a bunch of crap " rather than engaging a

parents' concerns. There are ways of not agreeing with something that are not

dismissive and still encourage discussion and debate. Apparently this doctor

missed that lesson in medical school!

I am not sure where you in the country, but we saw a pediatric neurologist

recommended to us by Dr Agin, and our experience with him was entirely different

from what you describe. And yes, he did diagnose apraxia (or, technically,

confirm Dr Agin's diagnosis of apraxia), in addition to hypotonia and

developmental delays. My son was 23 months at the time.

If you're anywhere near Mountainside, New Jersey, you might consider seeing him.

His name is Abba Cargan, and my husband and I both really liked him. In

addition to being very thorough and very clear about everything he was looking

at and finding, he also took a " whole child " approach and talked to my husband

and me about many issues related to 's development, including the

importance of having him swim as an activity once he is ready and how to choose

the right schools for our him as well as when the right time would be to send

him (in 's case, he recommended not holding him back, as we had been

thinking we would do). We were very impressed.

I don't have his number off-hand but I have googled it before with no problem.

It took about six months to get an appt with him, but the wait was well worth

it. And I have had cause to call a couple of times since and he has been as

thorough and caring on the phone as he was in person too.

Just a suggestion.

Good luck,

(mom of , 2, and Gracie, 4)

[ ] Neuro exam -- big disappointment

We took our 31 mos old son to see a neurologist today. Our

pediatrician referred us when I asked about the blood work

described to us and about testing for Fragile X. The neurologist

seemed pretty put out that we were there for something

" developmental " and suggested that we bring our son to a

psychiatrist or psychologist (my son has some " red flag " behaviors

in addition to the not talking).

The doctor was not interested in doing any blood work or further

testing (mainstream or otherwise) because he said such tests produce

a " low yield " in terms of answers. He thinks restricted diets

(GFCF) and chelation are a " bunch of garbage. " He didn't mind that

we had our son on fish oils and Vit E though. He said it couldn't

hurt.

I specifically asked him about apraxia (which I thought was a

neurological disorder) and he said my son has symptoms consistent

with apraxia but that he couldn't diagnose that. He said my son's

OT and SLPs should make that call.

I'm not sure what to do next. I guess I need to bring my son to a

psychiatrist (and maybe myself to one while I'm at it), but then who

can I bring him to regarding whether or not he has apraxia? In

spite of what the neuro said, my son's therapists don't feel it is

their place to make medical diagnoses. And then there's the blood

work suggested, I suppose I could find a DAN doctor to do

it, but then I will have to pay out of pocket and I have heard it is

very expensive. Maybe I should just tinker with the supplements

more and add Carnaware just in case? I HATE dealing with the

doctors on this because I just don't feel I can explain myself well

enough when it comes to all these tests, and it is so emotional to

have someone tell you your child has a major disorder that getting

past that to talk about further testing . well it just didn't work

very well.

I just really feel like I failed.

[Guest guest]

My son's regular ped ordered the blood work...she checked for fragile X as well

as other genetic problems. It was simple. I don't undestand why your ped won't

just order the test....it is a good way to rule out other things that may be

going on. Try getting a new ped and see what happens. The test was short (just

drew a little bit of blood) and it put my mind at ease.

Good luck!!! Let me know what happens.

Jill (Lucas 3.9)

[Guest guest]

When I asked my pediatrician about the blood work and testing he

referred me to the neuro. He's nice and I guess I could push him but

I know he will be reluctant. It would be nice not to have to " arm

wrestle " over it, just because my confidence in being able to talk

intelligently about all of this is shaky. I'm looking for someone

knowledgeable to guide me through the process. I remember someone

posting that they got their ped to order the tests but then he didn't

know how to interpret them. These doctors assume you are in deep

denial and desperate and I just think they are dismissive because of

this. It's almost like, " oh well, another PDD/ASD case, have a nice

life! " I live in the New Orleans area by the way if anyone has any

thoughts.

Thanks to everyone responding to me on this.

[Guest guest]

What about a Speech and Language Pathologist? I believe that is who dx my son

with Apraxia.

Jan In Ca

myjunkytrash <myjunkytrash@...> wrote:

We took our 31 mos old son to see a neurologist today. Our

pediatrician referred us when I asked about the blood work

described to us and about testing for Fragile X. The neurologist

seemed pretty put out that we were there for something

" developmental " and suggested that we bring our son to a

psychiatrist or psychologist (my son has some " red flag " behaviors

in addition to the not talking).

The doctor was not interested in doing any blood work or further

testing (mainstream or otherwise) because he said such tests produce

a " low yield " in terms of answers. He thinks restricted diets

(GFCF) and chelation are a " bunch of garbage. " He didn't mind that

we had our son on fish oils and Vit E though. He said it couldn't

hurt.

I specifically asked him about apraxia (which I thought was a

neurological disorder) and he said my son has symptoms consistent

with apraxia but that he couldn't diagnose that. He said my son's

OT and SLPs should make that call.

I'm not sure what to do next. I guess I need to bring my son to a

psychiatrist (and maybe myself to one while I'm at it), but then who

can I bring him to regarding whether or not he has apraxia? In

spite of what the neuro said, my son's therapists don't feel it is

their place to make medical diagnoses. And then there's the blood

work suggested, I suppose I could find a DAN doctor to do

it, but then I will have to pay out of pocket and I have heard it is

very expensive. Maybe I should just tinker with the supplements

more and add Carnaware just in case? I HATE dealing with the

doctors on this because I just don't feel I can explain myself well

enough when it comes to all these tests, and it is so emotional to

have someone tell you your child has a major disorder that getting

past that to talk about further testing … well it just didn't work

very well.

I just really feel like I failed.

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

Get your email and more, right on the new .com

[Guest guest]

If you want routine nutritional testing that can be done through a lab

like CPL or Quest (which vit E and fatty acids can be), I would find

an osteopathic doctor who is on your insurance plan and go to that

person. Osteopaths are much more interested in nutritional solutions

(though YMMV). I doubt you will find a neurologist of dev ped who will

do that testing.

> >

> > We took our 31 mos old son to see a neurologist today. Our

> > pediatrician referred us when I asked about the blood work

> > described to us and about testing for Fragile X. The neurologist

> > seemed pretty put out that we were there for something

> > " developmental " and suggested that we bring our son to a

> > psychiatrist or psychologist (my son has some " red flag " behaviors

> > in addition to the not talking).

> >

> > The doctor was not interested in doing any blood work or further

> > testing (mainstream or otherwise) because he said such tests

> produce

> > a " low yield " in terms of answers. He thinks restricted diets

> > (GFCF) and chelation are a " bunch of garbage. " He didn't mind

> that

> > we had our son on fish oils and Vit E though. He said it couldn't

> > hurt.

> >

> > I specifically asked him about apraxia (which I thought was a

> > neurological disorder) and he said my son has symptoms consistent

> > with apraxia but that he couldn't diagnose that. He said my son's

> > OT and SLPs should make that call.

> >

> > I'm not sure what to do next. I guess I need to bring my son to a

> > psychiatrist (and maybe myself to one while I'm at it), but then

> who

> > can I bring him to regarding whether or not he has apraxia? In

> > spite of what the neuro said, my son's therapists don't feel it is

> > their place to make medical diagnoses. And then there's the blood

> > work suggested, I suppose I could find a DAN doctor to do

> > it, but then I will have to pay out of pocket and I have heard it

> is

> > very expensive. Maybe I should just tinker with the supplements

> > more and add Carnaware just in case? I HATE dealing with the

> > doctors on this because I just don't feel I can explain myself

> well

> > enough when it comes to all these tests, and it is so emotional to

> > have someone tell you your child has a major disorder that getting

> > past that to talk about further testing … well it just didn't work

> > very well.

> >

> > I just really feel like I failed.

> >

>

[Guest guest]

Oh, I lost my post... well here it is again.

You DIDN'T FAIL!!! YOU ARE JUST ON THE SUCKY PART OF THE

JOURNEY..one door closes and another opens.

I'm 5 months into this. I was doing the " waiting " thing ...

ears,professionals who know nothing... long/boring/not important now

I say (after spinning my wheels with Dr.'s and so called

professionals through this past 5 months) go directly to the DAN Dr.

Well, sort of, as a good one takes several months to get into. I

will be seeing Dr. DeMio in December. You can measure the

cost of tests until you are blue in the face. You have to remember

time is of the essence, our kids brains are developing and this is

truly a window of opportunity. Don't waste time trading 50.00

dollar bills.

Don't get hung up on the autism term, and how scary it is or

not...bottom line is our kids are neurologically damaged, deficient,

you choose a term. Apraxic kids and autistic kids have a lot of the

same physiology/biology and no 2 ASD kids present the same. Take

what you need and leave what doesn't apply.

Chelation...cross that bridge when you come to it. Learn about it

and be open minded. A hair analysis was the first thing I did when

I knew nothing and still " waiting " . I'm glad I got that now.. a

great tool but you also need someone who can interpret it properly

that is in my opinion, only a seasoned DAN Dr.

I highly suggest you read your head off... start with Children with

Starving Brains by Jacquelin McCandless, she also has a chat group

and is quite active on others as well. chelatingkids2 () are

the parents " in the know " , you will find that these are well

seasoned parents and may not really be what you are looking at but I

find the information very very informative. They are top notch,

active and have great archives to do further research. They are all

going to the brightest and best Dr.'s around the country. I read

several of the top suggested books all at the same time but

McCandless does a great job putting it in a comprehensive format.

Ok, you may have to go back and re read it when your head stops

spinning with all the new terminology. She talks about tests, the

ones you need, and those you don't and why.

Also, you should absolutely start the GF/CF diet. McCandliss talks

about this too, the reasons why. MANY parents have seen the most

gains from this intervention. Particularly if your kid has some

behaviors that are driving you nuts. It's all explained in the

book. And I can tell you, it seems overwhelming at first but it's

really not hard at all. Google it... Sourousi (spelling?) book

is a must read. At the very least, the biomeds that you are giving

your kid will have a better chance of doing more than making

expensive pee pee. It will heal the gut, even if you don't think

your kid has gut issues. The CF part is very important if your kid

has a long history of ear infections. Keep in mind, you may see

some bad behavior for about 2 - 3 weeks that may even include a

cold. Keep going and don't cheat!!! My mild mannered, lethargic

kid almost got kicked out of Montessori school when we started the

diet... seriously. But, the good news... after chronic, and I mean

chronic ear infections despite the tubes, not one sign of ear

infection in 5 months and we just got over a very bad cold without

(for the first time) the ears being included.

Choose a DAN Dr. based on how active they are NOT necessarily how

close to your home, (autismwebsite.com) MAKE SURE their bio shows

they are active and have gone to recent conferences - these

conferences are critical as their is a lot of new insights and you

want that info. You don't see them for every little thing and these

Dr.'s are accustomed to telephone consults and use email for

important information exchange. Let's see you get that with the ped

down the street. Yeah, right, you barely get his full attention for

a whole 15 minutes.

Ideally, you will be able to break away from the traditional ped

with the closed mind and find a Dr. locally who is naturally based,

you have to ask around. One big clue will be one that doesn't shove

immunizations down your throat, or, perhaps doesn't recommend them

at all. That is the person who will be a good " team " member

in " recovering " your child. They will be the go to person when your

kid has colds and then coordinate testing with your DAN.

Great advise I got from another Mother (who fully recovered 3 of her

4 children) is to (for the most part) keep your mouth shut when you

are faced with allopathic MD's also included are ST, OT, PT's unless

they are the up and commers...as they are more open and into the

newest techniques. And they won't give you that oh so

aggrevating " look " that often goes with eye rolling. Forget them,

take what you need be it speech therapy and don't talk about the

biomeds that you are doing. In fact,go as far as to let them take

all the credit for the gains. You will be far less frustrated...

keep your eye on the prize... your recovered child.

Finally, find a good way to keep a diary about your child. Include,

health, appetite, biomeds tried/stopped/changed, poop,

words/phrases, sleep patterns, behaviors like stimming

increased/decreased, therapies. If you attend your apt with a

seasoned DAN with all of this information, he/she will be able to

make sense of it and get to the root of your issues faster and the

better chance you have of a FULL recovery.

All of the above from recent experience, thousands of dollars and

precious time wasted. I am so ready to be treated with respect

rather than " another " hysterical, desperate parent. Dr. DeMio has a

kid with Autism, participates in DAN conferences and his practice is

dedicated to THE BIOMEDICINE OF Autism, Aspergers ADD/ADHD, OCD and

Developmental Disorders. I suspect we will be in the latter part...

developmental disorders catagory.

You SO DID NOT FAIL... YOU ARE WAY AHEAD OF THE GAME! HTH Let us

know how things progress

>

>

>

> I feel your pain and frustration..before going to a DAN doctor and

have to

> pay for the tests yourself..find another pediatrician.there are

some young

> ones age wise that is.. that may be more open minded.. It just is

not

> fair..I wish there was an easier way to find out how a parent can

help their

> child.

>

> 's Mom

>

>

>

> _____

>

> From:

> [mailto: ] On Behalf Of

myjunkytrash

> Sent: Tuesday, October 10, 2006 11:55 PM

>

> Subject: [ ] Neuro exam -- big disappointment

>

>

>

> We took our 31 mos old son to see a neurologist today. Our

> pediatrician referred us when I asked about the blood work

> described to us and about testing for Fragile X. The neurologist

> seemed pretty put out that we were there for something

> " developmental " and suggested that we bring our son to a

> psychiatrist or psychologist (my son has some " red flag " behaviors

> in addition to the not talking).

>

> The doctor was not interested in doing any blood work or further

> testing (mainstream or otherwise) because he said such tests

produce

> a " low yield " in terms of answers. He thinks restricted diets

> (GFCF) and chelation are a " bunch of garbage. " He didn't mind that

> we had our son on fish oils and Vit E though. He said it couldn't

> hurt.

>

> I specifically asked him about apraxia (which I thought was a

> neurological disorder) and he said my son has symptoms consistent

> with apraxia but that he couldn't diagnose that. He said my son's

> OT and SLPs should make that call.

>

> I'm not sure what to do next. I guess I need to bring my son to a

> psychiatrist (and maybe myself to one while I'm at it), but then

who

> can I bring him to regarding whether or not he has apraxia? In

> spite of what the neuro said, my son's therapists don't feel it is

> their place to make medical diagnoses. And then there's the blood

> work suggested, I suppose I could find a DAN doctor to do

> it, but then I will have to pay out of pocket and I have heard it

is

> very expensive. Maybe I should just tinker with the supplements

> more and add Carnaware just in case? I HATE dealing with the

> doctors on this because I just don't feel I can explain myself

well

> enough when it comes to all these tests, and it is so emotional to

> have someone tell you your child has a major disorder that getting

> past that to talk about further testing . well it just didn't work

> very well.

>

> I just really feel like I failed.

>

>

>

>

>

>

[Guest guest]

Here's my two cents....

Go back to the pediatrician. You've already started the discussion

with him and that's the biggest hurdle.

Tell pediatrician how " awful " the neurologist was to you. Don't be

mad about it, just express to him how flustered you are ... just like

you expressed it to us.

Just as a side note, I want to reassure you that neurologists are not

known for their bedside manner. They are notorious for being snippy,

unkind and dismissive. There are exceptions to this but what you

experienced today fits the usual stereotype of neurologists. I worked

with a physician who was married to a neurologist. She always said in

reference to her husband " with him you aren't buying his bedside

manner, you're simply buying his brain " .

Don't try to explain it all to the pediatrician, make your case, etc.

Just stress to him that you are a worried mom. If you cry... so be it.

Saying things like " I'm worried " , " this keeps me up at night " , etc

will go much farther than trying to discuss all the ins and outs of

this.

Ask, not demand, just ask him if he wouldn't please just help you out

and order the tests so that you can " rest a little easier " .

Acknowledge that he may not agree or understand why you want to know

but that you're worried and just getting this simple blood test will go

a long way to quieting your mind.

You'll likely never convince him of the medical necessity of these

tests. Better to focus on him helping to alleviate mom's worry and

concern. Debating with the pediatrician will likely only lead to

defensiveness on his part. Focusing on your concern will make him more

likely to listen and less likely to judge.

Just a thought.

Kris

On Oct 11, 2006, at 9:46 AM, myjunkytrash wrote:

> When I asked my pediatrician about the blood work and testing he

> referred me to the neuro. He's nice and I guess I could push him but

> I know he will be reluctant. It would be nice not to have to " arm

> wrestle " over it, just because my confidence in being able to talk

> intelligently about all of this is shaky. I'm looking for someone

> knowledgeable to guide me through the process. I remember someone

> posting that they got their ped to order the tests but then he didn't

> know how to interpret them. These doctors assume you are in deep

> denial and desperate and I just think they are dismissive because of

> this. It's almost like, " oh well, another PDD/ASD case, have a nice

> life! " I live in the New Orleans area by the way if anyone has any

> thoughts.

>

> Thanks to everyone responding to me on this.

>

>

[Guest guest]

Here's my two cents....

Go back to the pediatrician. You've already started the discussion

with him and that's the biggest hurdle.

Tell pediatrician how " awful " the neurologist was to you. Don't be

mad about it, just express to him how flustered you are ... just like

you expressed it to us.

Just as a side note, I want to reassure you that neurologists are not

known for their bedside manner. They are notorious for being snippy,

unkind and dismissive. There are exceptions to this but what you

experienced today fits the usual stereotype of neurologists. I worked

with a physician who was married to a neurologist. She always said in

reference to her husband " with him you aren't buying his bedside

manner, you're simply buying his brain " .

Don't try to explain it all to the pediatrician, make your case, etc.

Just stress to him that you are a worried mom. If you cry... so be it.

Saying things like " I'm worried " , " this keeps me up at night " , etc

will go much farther than trying to discuss all the ins and outs of

this.

Ask, not demand, just ask him if he wouldn't please just help you out

and order the tests so that you can " rest a little easier " .

Acknowledge that he may not agree or understand why you want to know

but that you're worried and just getting this simple blood test will go

a long way to quieting your mind.

You'll likely never convince him of the medical necessity of these

tests. Better to focus on him helping to alleviate mom's worry and

concern. Debating with the pediatrician will likely only lead to

defensiveness on his part. Focusing on your concern will make him more

likely to listen and less likely to judge.

Just a thought.

Kris

On Oct 11, 2006, at 9:46 AM, myjunkytrash wrote:

> When I asked my pediatrician about the blood work and testing he

> referred me to the neuro. He's nice and I guess I could push him but

> I know he will be reluctant. It would be nice not to have to " arm

> wrestle " over it, just because my confidence in being able to talk

> intelligently about all of this is shaky. I'm looking for someone

> knowledgeable to guide me through the process. I remember someone

> posting that they got their ped to order the tests but then he didn't

> know how to interpret them. These doctors assume you are in deep

> denial and desperate and I just think they are dismissive because of

> this. It's almost like, " oh well, another PDD/ASD case, have a nice

> life! " I live in the New Orleans area by the way if anyone has any

> thoughts.

>

> Thanks to everyone responding to me on this.

>

>

[Guest guest]

I think maybe it depends on the individual MD. For us, the

neurologist was the best, most thoughtful and most attentive. And he

made a firm diagnosis of apraxia, despite my child's young age of 19

months at the time. Our developmental pediatrician seemed more

interested in administering standardized tests.

[Guest guest]

Hi,

I live in Cincinnati, too. My son has an appointment in January with

a dev. ped. from Children's Hosp.

Could you give me any info. regarding your experiences locally? Feel

free to email me privately. Thanks!

On 10/11/06, marina3029 <philipmary@...> wrote:

>

>

>

>

>

>

> Hi -

>

> I would suggest locating a developmental pediatrician. And I'd call

> first. You'd be surprised what the nurses will tell you if you call

> and are really nice and tell them that " you've been the route of

> neuros, regular peds, etc. and you just want some answers... " I

> don't recall where you are, but in Cinci here a trip to a dev ped

> gets you an initial visit where they decide what other appts you

> should make (OT, PT, SLP, MRI, Audiology, nutrition (yep - we did

> it), genetics, bloodwork, etc.). If you post your general area, I

> bet you'd get some good suggestions of whom to see where. And, more

> importantly, where and whom NOT to see (including here in Cinci).

>

> If you're dealing with " pure apraxia " and all you want is the blood

> tests, could you just ask your regular ped to order the tests??

>

>

> >

> > We took our 31 mos old son to see a neurologist today. Our

> > pediatrician referred us when I asked about the blood work

> > described to us and about testing for Fragile X. The neurologist

> > seemed pretty put out that we were there for something

> > " developmental " and suggested that we bring our son to a

> > psychiatrist or psychologist (my son has some " red flag " behaviors

> > in addition to the not talking).

> >

> > The doctor was not interested in doing any blood work or further

> > testing (mainstream or otherwise) because he said such tests

> produce

> > a " low yield " in terms of answers. He thinks restricted diets

> > (GFCF) and chelation are a " bunch of garbage. " He didn't mind

> that

> > we had our son on fish oils and Vit E though. He said it couldn't

> > hurt.

> >

> > I specifically asked him about apraxia (which I thought was a

> > neurological disorder) and he said my son has symptoms consistent

> > with apraxia but that he couldn't diagnose that. He said my son's

> > OT and SLPs should make that call.

> >

> > I'm not sure what to do next. I guess I need to bring my son to a

> > psychiatrist (and maybe myself to one while I'm at it), but then

> who

> > can I bring him to regarding whether or not he has apraxia? In

> > spite of what the neuro said, my son's therapists don't feel it is

> > their place to make medical diagnoses. And then there's the blood

> > work suggested, I suppose I could find a DAN doctor to do

> > it, but then I will have to pay out of pocket and I have heard it

> is

> > very expensive. Maybe I should just tinker with the supplements

> > more and add Carnaware just in case? I HATE dealing with the

> > doctors on this because I just don't feel I can explain myself

> well

> > enough when it comes to all these tests, and it is so emotional to

> > have someone tell you your child has a major disorder that getting

> > past that to talk about further testing … well it just didn't work

> > very well.

> >

> > I just really feel like I failed.

> >

>

>

>

>

[Guest guest]

-A speech Lannguage Pathologist is the right proffesional.They are

the on ewho diagnose and treat apraxia

-- In , Jan Compton

<mar4com2003@...> wrote:

>

> What about a Speech and Language Pathologist? I believe that is who

dx my son with Apraxia.

>

> Jan In Ca

>

> myjunkytrash <myjunkytrash@...> wrote:

> We took our 31 mos old son to see a neurologist today.

Our

> pediatrician referred us when I asked about the blood work

> described to us and about testing for Fragile X. The neurologist

> seemed pretty put out that we were there for something

> " developmental " and suggested that we bring our son to a

> psychiatrist or psychologist (my son has some " red flag " behaviors

> in addition to the not talking).

>

> The doctor was not interested in doing any blood work or further

> testing (mainstream or otherwise) because he said such tests

produce

> a " low yield " in terms of answers. He thinks restricted diets

> (GFCF) and chelation are a " bunch of garbage. " He didn't mind that

> we had our son on fish oils and Vit E though. He said it couldn't

> hurt.

>

> I specifically asked him about apraxia (which I thought was a

> neurological disorder) and he said my son has symptoms consistent

> with apraxia but that he couldn't diagnose that. He said my son's

> OT and SLPs should make that call.

>

> I'm not sure what to do next. I guess I need to bring my son to a

> psychiatrist (and maybe myself to one while I'm at it), but then

who

> can I bring him to regarding whether or not he has apraxia? In

> spite of what the neuro said, my son's therapists don't feel it is

> their place to make medical diagnoses. And then there's the blood

> work suggested, I suppose I could find a DAN doctor to do

> it, but then I will have to pay out of pocket and I have heard it

is

> very expensive. Maybe I should just tinker with the supplements

> more and add Carnaware just in case? I HATE dealing with the

> doctors on this because I just don't feel I can explain myself well

> enough when it comes to all these tests, and it is so emotional to

> have someone tell you your child has a major disorder that getting

> past that to talk about further testing … well it just didn't work

> very well.

>

> I just really feel like I failed.

>

>

>

>

>

>

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

> Get your email and more, right on the new .com

>

>

[Guest guest]

I think maybe it depends on the individual MD. For us, the

neurologist was the best, most thoughtful and most attentive. And he

made a firm diagnosis of apraxia, despite my child's young age of 19

months at the time. Our developmental pediatrician seemed more

interested in administering standardized tests.

[Guest guest]

Hi,

I live in Cincinnati, too. My son has an appointment in January with

a dev. ped. from Children's Hosp.

Could you give me any info. regarding your experiences locally? Feel

free to email me privately. Thanks!

On 10/11/06, marina3029 <philipmary@...> wrote:

>

>

>

>

>

>

> Hi -

>

> I would suggest locating a developmental pediatrician. And I'd call

> first. You'd be surprised what the nurses will tell you if you call

> and are really nice and tell them that " you've been the route of

> neuros, regular peds, etc. and you just want some answers... " I

> don't recall where you are, but in Cinci here a trip to a dev ped

> gets you an initial visit where they decide what other appts you

> should make (OT, PT, SLP, MRI, Audiology, nutrition (yep - we did

> it), genetics, bloodwork, etc.). If you post your general area, I

> bet you'd get some good suggestions of whom to see where. And, more

> importantly, where and whom NOT to see (including here in Cinci).

>

> If you're dealing with " pure apraxia " and all you want is the blood

> tests, could you just ask your regular ped to order the tests??

>

>

> >

> > We took our 31 mos old son to see a neurologist today. Our

> > pediatrician referred us when I asked about the blood work

> > described to us and about testing for Fragile X. The neurologist

> > seemed pretty put out that we were there for something

> > " developmental " and suggested that we bring our son to a

> > psychiatrist or psychologist (my son has some " red flag " behaviors

> > in addition to the not talking).

> >

> > The doctor was not interested in doing any blood work or further

> > testing (mainstream or otherwise) because he said such tests

> produce

> > a " low yield " in terms of answers. He thinks restricted diets

> > (GFCF) and chelation are a " bunch of garbage. " He didn't mind

> that

> > we had our son on fish oils and Vit E though. He said it couldn't

> > hurt.

> >

> > I specifically asked him about apraxia (which I thought was a

> > neurological disorder) and he said my son has symptoms consistent

> > with apraxia but that he couldn't diagnose that. He said my son's

> > OT and SLPs should make that call.

> >

> > I'm not sure what to do next. I guess I need to bring my son to a

> > psychiatrist (and maybe myself to one while I'm at it), but then

> who

> > can I bring him to regarding whether or not he has apraxia? In

> > spite of what the neuro said, my son's therapists don't feel it is

> > their place to make medical diagnoses. And then there's the blood

> > work suggested, I suppose I could find a DAN doctor to do

> > it, but then I will have to pay out of pocket and I have heard it

> is

> > very expensive. Maybe I should just tinker with the supplements

> > more and add Carnaware just in case? I HATE dealing with the

> > doctors on this because I just don't feel I can explain myself

> well

> > enough when it comes to all these tests, and it is so emotional to

> > have someone tell you your child has a major disorder that getting

> > past that to talk about further testing … well it just didn't work

> > very well.

> >

> > I just really feel like I failed.

> >

>

>

>

>