Re: do i need to see a nuerologist?

[Guest guest]

The nuerologist is just going to tell you whether is brain is " normal " or

not..maybe some brain damage..He will not be able to tell you anything else

about his inability to speak.

I saw a neuro-developmental pediatrician who had experience with Apraxia

and other Speech Related Disorders. Some people get their diagnosis from

SLP's...

" christinerome "

<christinerome@ya

hoo.com> To

Sent by:

childrensapraxian cc

et@...

m Subject

[ ] do i need to

see a nuerologist?

09/20/2007 10:38

AM

Please respond to

childrensapraxian

et@...

m

Hi everyone,

I have been part of this list for about 4 years and it has been my

everything concerning my boy.

I have a question, do you guys think its neccesary to get a MRI, cat-

scan or any of those kind of tests and of course see a nuerologist?

I'm asking because its one thing i did not do. all i think it will do

is maybe explain why not help him speak better. is it worth it?

chris

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[Guest guest]

We did just to rule out anything more.

We also had an EEG done which was rather interesting.

_____

From:

[mailto: ] On Behalf Of christinerome

Sent: Thursday, September 20, 2007 9:38 AM

Subject: [ ] do i need to see a nuerologist?

Hi everyone,

I have been part of this list for about 4 years and it has been my

everything concerning my boy.

I have a question, do you guys think its neccesary to get a MRI, cat-

scan or any of those kind of tests and of course see a nuerologist?

I'm asking because its one thing i did not do. all i think it will do

is maybe explain why not help him speak better. is it worth it?

chris

[Guest guest]

Hi, Chris!

Long time no speak! The only reason we ever had MRI's done for Josh was (a)

because he had a febrile seizure and docs wanted to rule out anything else, and

( because the ped neuro wanted to have a new MRI to see about L-carnitine

deficiencies which, apparently, can show up in the brain (note, not L-carnosine

that is in the Carnaware) (then again, I may have them reversed... it's been a

long day). When the first MRI was done for the seizure disorder elimination,

they found a Dandy Variant and we had gone on that as the diagnosis for a

few years - DWV would have explained the apraxia, the motor issues, the sensory

issues, pretty much everything. But, when we tried to get Josh into a DW

research study at Univ. of Chicago, the ped neuro and a geneticist both said it

really wasn't DWV. The MRI's did show a " channel " near the cerebellum that

appeared to be a bit wider than normal and the docs said that could be related

to Josh's symptoms and conditions, but maybe

not. Even if it was, what would be done differently than what we were already

doing? Nothing.

So, I guess the answer is to look into your heart and decide whether you want

to put through an MRI (a very noisy endeavor - they had to totally sedate

Josh to be able to get him into the machine) to maybe have an answer to some

questions that may or may not have an effect on what you are already, as the

great mom you are, doing for .

Take care and give a hug from Josh.

Sherry and Josh

christinerome <christinerome@...> wrote:

Hi everyone,

I have been part of this list for about 4 years and it has been my

everything concerning my boy.

I have a question, do you guys think its neccesary to get a MRI, cat-

scan or any of those kind of tests and of course see a nuerologist?

I'm asking because its one thing i did not do. all i think it will do

is maybe explain why not help him speak better. is it worth it?

chris

[Guest guest]

The neurologist we saw didn't order an MRI or CT scan for my son. She did

order an EEG (and we STILL dont' have results over a month later!!! Grrrr!

A secretary said the final report was delayed, but the prelim was normal,

but the neuro wanted to talk to the tech about something...what does that

mean?)

The only reason I'd be interested in an MRI is because he had a skull

fracture at 5 mo and has language as well as apraxia. His SLP says it looks

like aphasia. That was the reason for the EEG - to look for absence

seizures particularly during sleep. But the neuro didn't order one. She did

refer us for neuropsych testing and I'm hoping that is useful! His

appointment is Oct 4. I spoke with the Dr who will be doing it and loved

him! He seems to " get " speech and language delays and will decide what

tests he does after he meets . He sometimes does IQ tests, but picks

and chooses parts of different ones. He's not interested in a score, but is

interested in HOW the child processes information and what techniques can

reach the child better.

The good part of this is it is considered medical neuropsych testing. Much

of the information we'll get will be the same as if I sought out educational

neuropsych testing, but going through a referral from an MD it will be 100%

covered by insurance and educational testing isn't covered at all!

Miche

[Guest guest]

thanks,

do you live in New York? I totally forgot there are specialist in neurology.

looooove the " how " the child is processing the information.

if you do live in NY can you give me the name of the doc?

chris

Re: [ ] do i need to see a nuerologist?

The neurologist we saw didn't order an MRI or CT scan for my son. She did

order an EEG (and we STILL dont' have results over a month later!!! Grrrr!

A secretary said the final report was delayed, but the prelim was normal,

but the neuro wanted to talk to the tech about something... what does that

mean?)

The only reason I'd be interested in an MRI is because he had a skull

fracture at 5 mo and has language as well as apraxia. His SLP says it looks

like aphasia. That was the reason for the EEG - to look for absence

seizures particularly during sleep. But the neuro didn't order one. She did

refer us for neuropsych testing and I'm hoping that is useful! His

appointment is Oct 4. I spoke with the Dr who will be doing it and loved

him! He seems to " get " speech and language delays and will decide what

tests he does after he meets . He sometimes does IQ tests, but picks

and chooses parts of different ones. He's not interested in a score, but is

interested in HOW the child processes information and what techniques can

reach the child better.

The good part of this is it is considered medical neuropsych testing. Much

of the information we'll get will be the same as if I sought out educational

neuropsych testing, but going through a referral from an MD it will be 100%

covered by insurance and educational testing isn't covered at all!

Miche

[Guest guest]

thanks sherry.

hugs to Josh and you

chris

Re: [ ] do i need to see a nuerologist?

Hi, Chris!

Long time no speak! The only reason we ever had MRI's done for Josh was (a)

because he had a febrile seizure and docs wanted to rule out anything else, and

( because the ped neuro wanted to have a new MRI to see about L-carnitine

deficiencies which, apparently, can show up in the brain (note, not L-carnosine

that is in the Carnaware) (then again, I may have them reversed... it's been a

long day). When the first MRI was done for the seizure disorder elimination,

they found a Dandy Variant and we had gone on that as the diagnosis for a

few years - DWV would have explained the apraxia, the motor issues, the sensory

issues, pretty much everything. But, when we tried to get Josh into a DW

research study at Univ. of Chicago, the ped neuro and a geneticist both said it

really wasn't DWV. The MRI's did show a " channel " near the cerebellum that

appeared to be a bit wider than normal and the docs said that could be related

to Josh's symptoms and

conditions, but maybe

not. Even if it was, what would be done differently than what we were already

doing? Nothing.

So, I guess the answer is to look into your heart and decide whether you want to

put through an MRI (a very noisy endeavor - they had to totally sedate Josh

to be able to get him into the machine) to maybe have an answer to some

questions that may or may not have an effect on what you are already, as the

great mom you are, doing for .

Take care and give a hug from Josh.

Sherry and Josh

christinerome <christinerome> wrote:

Hi everyone,

I have been part of this list for about 4 years and it has been my

everything concerning my boy.

I have a question, do you guys think its neccesary to get a MRI, cat-

scan or any of those kind of tests and of course see a nuerologist?

I'm asking because its one thing i did not do. all i think it will do

is maybe explain why not help him speak better. is it worth it?

chris

[Guest guest]

How old is he. Some things show on MRIs and others do not. Pet scans can

show lesions better I think. My thing is, if he were old enough to get

either w/o anesthesia I might consider it. Since anesthesia is a factor

at my son's age it is a no go.

Grassia wrote:

> The neurologist we saw didn't order an MRI or CT scan for my son. She did

> order an EEG (and we STILL dont' have results over a month later!!! Grrrr!

> A secretary said the final report was delayed, but the prelim was normal,

> but the neuro wanted to talk to the tech about something...what does that

> mean?)

>

> The only reason I'd be interested in an MRI is because he had a skull

> fracture at 5 mo and has language as well as apraxia. His SLP says it

> looks

> like aphasia. That was the reason for the EEG - to look for absence

> seizures particularly during sleep. But the neuro didn't order one.

> She did

> refer us for neuropsych testing and I'm hoping that is useful! His

> appointment is Oct 4. I spoke with the Dr who will be doing it and loved

> him! He seems to " get " speech and language delays and will decide what

> tests he does after he meets . He sometimes does IQ tests, but picks

> and chooses parts of different ones. He's not interested in a score,

> but is

> interested in HOW the child processes information and what techniques can

> reach the child better.

>

> The good part of this is it is considered medical neuropsych testing. Much

> of the information we'll get will be the same as if I sought out

> educational

> neuropsych testing, but going through a referral from an MD it will be

> 100%

> covered by insurance and educational testing isn't covered at all!

>

> Miche

>

>

[Guest guest]

I personally think it's wise to always have a " paper trail " from Drs with as

many of the diagnosis as you can get from them. (basically then you are able

to get more services whether it be through the school system or insurance

co.)

I think it's pretty important for anyone who has been diagnosed by the SLP

with Apraxia/Dyspraxia, to be seen by a neurologist, to rule out any OTHER

problems that may exist.

I know that there is a 90% co-morbidity rate for those with Oral Dyspraxia

to also have Developmental Dyspraxia, which I feel is vital to get on the

records for these kids in order to get more help geared for their needs

Becky

************************************** See what's new at http://www.aol.com

[Guest guest]

I forgot to add that the Neuro that we saw didn't do any " medical " tests

such as an MRI or CAT or EEG or anything like that

Becky

************************************** See what's new at http://www.aol.com

[Guest guest]

No I'm in NM.

On 9/21/07, Rome <christinerome@...> wrote:

>

> thanks,

> do you live in New York? I totally forgot there are specialist in

> neurology. looooove the " how " the child is processing the information.

> if you do live in NY can you give me the name of the doc?

> chris

>

[Guest guest]

He just turned 6. He would probably move too much at this point, but he

might be ok. We did drug him for the EEG, but that seemed like a decent

possibility. He was told to stay still and he kept rubbing his eyes. The

amitriptyline took forever to work. It should have knocked him out in 30

mins, but it took almost two hours before he was asleep. And it made him

sick.

I still want to look for medical causes because he doesn't just have

apraxia. The aphasia-like language issues are more likely to be explained

by some brain trauma (which he had.) And that might get more covered by

insurance as well. There's a hope at least! Starting in Jan we'll have

just 60 visits lifetime for him (with United Insurance.) After we fight and

say it isn't developmental, but due to an injury. It's 60 PT/OT/ST combined

per injury/incident.

Miche

[Guest guest]

wow, that's right! I never got a specific diagnosis of which type of apraxia he

has. I feel for sure that he has global apraxia. I have a find a good

definition of global. He has motor issues as well as cognitive issues. Since

he started K (he is now in 2nd) I was wondering if his cognitive isssues were

due to his apraxia or would he have cognitive issues anyway. I also wonder if

has ADHD, does he have attentional issues because of the apraxia.

He is getting older now and sticking out more now. I am just scared that he

will fall behind more. His speech is soooo disordered and every year I just see

him just melting away socially. Other kids don't help saying " I don't understand

his language " ugggg

thanks

chris

Re: [ ] do i need to see a nuerologist?

I personally think it's wise to always have a " paper trail " from Drs with as

many of the diagnosis as you can get from them. (basically then you are able

to get more services whether it be through the school system or insurance

co.)

I think it's pretty important for anyone who has been diagnosed by the SLP

with Apraxia/Dyspraxia, to be seen by a neurologist, to rule out any OTHER

problems that may exist.

I know that there is a 90% co-morbidity rate for those with Oral Dyspraxia

to also have Developmental Dyspraxia, which I feel is vital to get on the

records for these kids in order to get more help geared for their needs

Becky

************ ********* ********* ******** See what's new at http://www.aol. com

[Guest guest]

that's great you got coverage. OMG 2 hrs, poor kid

thanks for your response

chris

Re: [ ] do i need to see a nuerologist?

He just turned 6. He would probably move too much at this point, but he

might be ok. We did drug him for the EEG, but that seemed like a decent

possibility. He was told to stay still and he kept rubbing his eyes. The

amitriptyline took forever to work. It should have knocked him out in 30

mins, but it took almost two hours before he was asleep. And it made him

sick.

I still want to look for medical causes because he doesn't just have

apraxia. The aphasia-like language issues are more likely to be explained

by some brain trauma (which he had.) And that might get more covered by

insurance as well. There's a hope at least! Starting in Jan we'll have

just 60 visits lifetime for him (with United Insurance.) After we fight and

say it isn't developmental, but due to an injury. It's 60 PT/OT/ST combined

per injury/incident.

Miche

[Guest guest]

In our experience it was huge. was 'globally apraxic' and

that was it initially (stumbly and didnt talk).

We saw neuro who ordered some specialized bloodwork and an MRI.

What I have learned over the years is there can be other causes and

some of them can be treated. Unfortunately s is not treatable,

but it could just as easily have been one of the metabolic problems

that is treatable with diet or meds.

I would say it cant hurt to see a neuro, even if just to do some basic

bloodwork and a neuro exam, just to be sure there is nothing worth

looking into further.

Thats just our experience though.

Keely

www.caringbridge.org/visit/brandonandtyler

>

> Hi everyone,

>

> I have been part of this list for about 4 years and it has been my

> everything concerning my boy.

> I have a question, do you guys think its neccesary to get a MRI, cat-

> scan or any of those kind of tests and of course see a nuerologist?

> I'm asking because its one thing i did not do. all i think it will

do

> is maybe explain why not help him speak better. is it worth it?

> chris

>