Experience with Neurologist

[Guest guest]

Hi Stephany:

Thanks for the update on . I wish we had been able to get this view

of Steve's OCD. He did find the PET images very helpful in learning how to

deal with his OCD. I even thought of blowing up the color photos in Brain

Lock and making a poster for his room but thought this was a little over

the top.

Generally the older tricyclics are not prescribed because of their side

effect profile and requiring dietary modifications. Even adults find this

difficult. Typically the meds used for OCD are SSRIs and there are a

number of them.

Good luck, take care, aloha, kathy (H)

kathyh@...

At 03:14 PM 06/02/2000 +0000, you wrote:

>Hi, I haven't been here for a while, but wanted to share my

>experience with you. I took my daughter, , who is 4 and who

>has OCD to The Institute for Developmental Behavioral Neurology. I

>wanted to see if had any other disorders, such as ADD or

>learning disabilities. Interestingly, They did an evoked potential

>test while she was hooked up for the EEG, and they were able to see

>excessive front lobe activity and made a concurring diagnosis of OCD

>based on that. They showed me a normal brain and her brain and it

>was really interesting. Has anyone ever had this done? This

>institute was impressive, but I felt it had a BIG feel to it and was

>not all that interested in her individual traits. They recommended

>an SSRI paired with an antipsychotic tranquilizer... which we just

>got off of because they were making her obsessions progressively

>worse. Anyone with young children on an tricylic antidepressant?

>Just wondering. Thanks for listening.

>

>Stephany

[Guest guest]

I agree with ! This really brought back a lot of negative memories

when trying to get help for .

Robin

On Tuesday, Feb 10, 2004, at 12:46 US/Eastern, merrywbee wrote:

> Don't make any more appt's to see her again! Yuck!

> W

>

>

>> I want to post so that other parents and care givers who may be

> just

>> starting this process can possibly learn from our experience. It

>> illustrates to me that even the professionals are not up to date

>> with apraxia even though they are diagnosing it.

[Guest guest]

I want to post so that other parents and care givers who may be just

starting this process can possibly learn from our experience. It

illustrates to me that even the professionals are not up to date

with apraxia even though they are diagnosing it.

Yesterday we attended our follow up appoinment with Nick's

neurologist. We saw her for the first time on Novemeber 10th and

then had the sleep EEG done on Novemeber 18th. It took me close to

two months of calling three times a week for her to finally read the

EEG and it took another month of waiting to get the follow up

appoinment. Is there a cue here that this isn't a good example of

early intervention!?

Yesterday at the appointment she insisted that she needed to see

Nick even though I insisted that I didn't want him hearing the adult

conversation. We had dragged Grandma there with us over the hour

and a half drive just so he wouldn't be exposed. The neurologist

won the argument and when she asked why I didn't want him to hear I

told her that I believed his self-esteem would be affected, that I

found him to already be self-conscious of the fact that he has

difficulty forming words. She told me flat out that a 33 month old

could NOT be self conscious, that he could be aware after the fact

of not being able to say a word but he wasn't old enough to pre-

think that. She then got up in his face and rapid fired some

questions like what was his name, how old was he, etc. He of course

backed away and she started asking the typical autism questions. I

told her that when confronted like that he shuts down, wasn't that

part of apraxia? She told me no, that she is now concerned about

this apparent selective mutism that he is displaying as he doesn't

display any other autistic tendencies.

To further the irritation she told me that I was interpreting for

him too much, that if he didn't feel frustraton that he wouldn't

learn to speak. Quote: " If you are always there to rescue him, WHY

should he bother!? " She told me that if he sobs let him, it's his

choice! I recall that she told us this in our first visit to her

but it didn't really sink in that time.

Now the real kicker, when I asked her how much therapy he should

have (the real reason we brought him to her was to try to get more

therapy from our EI program) she told me she was referring me to a

speech center for an evaluation! Why did we have her evaluate

him!? Ugggh! So frustrating!

I am SO thankful that I have that bible 'The Late Talker' in my back

pocket! I feel SO sad for parents going through this without the

support and information that this group and the book brings. I

can't imagine sitting in that neurologist's office yesterday and not

knowing what I know. Mostly I feel such pain for the children that

are being treated by people like this doctor who will be forced to

feel more frustration than they already feel and have the people

around them not understand that they are self aware, even before

they have difficulty with a specific word.

As with toxin and vaccine activism I know that there is nothing I

can do to change that my son is apraxic, but as parents I feel we

must get the word out there so other children and parents can be

helped and yes that means I accost pregnant woman in the super

market asking them if they are supplementing with fish oils! LOL!

Now someone needs to figure out a way to educate

those " professionals " that already KNOW IT ALL!

SAHM to 33 month old incrediable boy who happens to have

apraxia

[Guest guest]

Don't make any more appt's to see her again! Yuck!

W

> I want to post so that other parents and care givers who may be

just

> starting this process can possibly learn from our experience. It

> illustrates to me that even the professionals are not up to date

> with apraxia even though they are diagnosing it.

>

[Guest guest]

This is my recommendations about neurologist. First, I think they

are all pretty strange. It's something about the nature of

neurology.

Secondly, I think neurologist are great if you need an MRI or an

EEG. I think they are great at treating epilepsy.

One of our neurologist told us that there is no such thing as

apraxia (but he did agree that needed speech therapy).

All of our neurologist (3 so far) have missed that was weaker

on her left side. When she was little I pointed out that she had a

strange gait. The neuropsych was the one that verified our

suspicions. He ran a few tests on her, and told us that she was

weaker on her left side. Now that is older, she says that she

has a good arm and a bad arm.

I'm not sure which doctor is good at diagnosing autism. It took us

3 years before we got an MRI. We had to insist because our

neurologist didn't think that she needed one. He was shocked that

it showed lots of brain damage.

Suzi

> I want to post so that other parents and care givers who may be

just

> starting this process can possibly learn from our experience. It

> illustrates to me that even the professionals are not up to date

> with apraxia even though they are diagnosing it.

>

> Yesterday we attended our follow up appoinment with Nick's

> neurologist. We saw her for the first time on Novemeber 10th and

> then had the sleep EEG done on Novemeber 18th. It took me close

to

> two months of calling three times a week for her to finally read

the

> EEG and it took another month of waiting to get the follow up

> appoinment. Is there a cue here that this isn't a good example of

> early intervention!?

>

> Yesterday at the appointment she insisted that she needed to see

> Nick even though I insisted that I didn't want him hearing the

adult

> conversation. We had dragged Grandma there with us over the hour

> and a half drive just so he wouldn't be exposed. The neurologist

> won the argument and when she asked why I didn't want him to hear

I

> told her that I believed his self-esteem would be affected, that I

> found him to already be self-conscious of the fact that he has

> difficulty forming words. She told me flat out that a 33 month old

> could NOT be self conscious, that he could be aware after the fact

> of not being able to say a word but he wasn't old enough to pre-

> think that. She then got up in his face and rapid fired some

> questions like what was his name, how old was he, etc. He of

course

> backed away and she started asking the typical autism questions.

I

> told her that when confronted like that he shuts down, wasn't that

> part of apraxia? She told me no, that she is now concerned about

> this apparent selective mutism that he is displaying as he doesn't

> display any other autistic tendencies.

>

> To further the irritation she told me that I was interpreting for

> him too much, that if he didn't feel frustraton that he wouldn't

> learn to speak. Quote: " If you are always there to rescue him,

WHY

> should he bother!? " She told me that if he sobs let him, it's his

> choice! I recall that she told us this in our first visit to her

> but it didn't really sink in that time.

>

> Now the real kicker, when I asked her how much therapy he should

> have (the real reason we brought him to her was to try to get more

> therapy from our EI program) she told me she was referring me to a

> speech center for an evaluation! Why did we have her evaluate

> him!? Ugggh! So frustrating!

>

> I am SO thankful that I have that bible 'The Late Talker' in my

back

> pocket! I feel SO sad for parents going through this without the

> support and information that this group and the book brings. I

> can't imagine sitting in that neurologist's office yesterday and

not

> knowing what I know. Mostly I feel such pain for the children

that

> are being treated by people like this doctor who will be forced to

> feel more frustration than they already feel and have the people

> around them not understand that they are self aware, even before

> they have difficulty with a specific word.

>

> As with toxin and vaccine activism I know that there is nothing I

> can do to change that my son is apraxic, but as parents I feel we

> must get the word out there so other children and parents can be

> helped and yes that means I accost pregnant woman in the super

> market asking them if they are supplementing with fish oils!

LOL!

> Now someone needs to figure out a way to educate

> those " professionals " that already KNOW IT ALL!

>

>

> SAHM to 33 month old incrediable boy who happens to have

> apraxia

[Guest guest]

well my daughters neurologist has sent her report to the wrong drs office

twice and has dx her with being retarded due to her lack of speech despite the

fact that she has never had an IQ test. He also changes her diagnosis each time

we go to the office, I have elected not to go anymore, And this dr happens to

be a well respected and often recommended neurologist in County

NJ!!!!!!!

(Mom to Amara, Age 5 Apraxia, hypotonia, & ?)

[Guest guest]

,

I have one word to say about this neurologist...NEXT! I hope you can find a

medical professional that will help you with solutions for your child. Have

you thought about giving the neurologist a copy of " The Late Talker " so she

can learn? I like the suggestion of always having a loaner copy to lend to

professionals, parents and ignorant family members. I know that we aren't

made of money but if you stick with this doctor, having an educated medical

professional will save you money in the end.

You seem very knowledgeable and that is great for your son. I, too, think

about the children of parents who are still learning about all of this.

I know what you mean about wanting to tell pregnant women about EFAs. I

wish doctors would prescribe an EFA supplement right along with a prenatal

vitamin. Gosh...what would our population be like in 20 years if all

pregnant moms were taking EFA's??? I don't think SLPs would be out of a

job but the burden might be lessened.

Just my opinion....

Tricia Morin

North Carolina

[Guest guest]

I actually HAVE been telling all pregnant women I speak to about

EFAs. I bought a bottle for my baby sitter when she got pregnant.

I hope she continued to take it after that first bottle was gone. I

try to forward that information as much as possible. My dear hubbie

thinks I am pushy. Oh, he knew what he signed up for when he

married me!

I wouldn't be surprised if EFAs DO become part of the prenatal

regimen over the next 5 years.

Pam

> I know what you mean about wanting to tell pregnant women about

EFAs. I

> wish doctors would prescribe an EFA supplement right along with a

prenatal

> vitamin. Gosh...what would our population be like in 20 years if

all

> pregnant moms were taking EFA's??? I don't think SLPs would be

out of a

> job but the burden might be lessened.

>

> Just my opinion....

>

> Tricia Morin

> North Carolina

[Guest guest]

Hi Tricia,

You and others will be especially fond on this . . .

When I tried to discuss some of what I have learned about apraxia

from The Late Talker and other places the neurologist looked at me

and said, " I told you not to go reading on the internet and all over

the place! It will just scare you! There is a lot of mis

information out there. Don't read it. " When I insisted that the

information (regarding EFAs) was also in a book she insisted that I

needed to stop obsessing and just enjoy my child because he wouldn't

be small for very long. Now for any of you that doubt that she

really said these things, I have it on tape!

As for the pregnant women - I actually started into my EFA talk this

morning to two pregnant woman at the Y and they told me their mid

wives had already put them on Fish oil capsules! YEAH for mid

wives! How I wish to the bottom of my heart that anyone had told me

of the research regarding these supplements, I would have run to the

store to buy them while pregnant. Maybe Nick would still be

apraxic, maybe not and that 'maybe' is what may haunt me for a very,

very long time.

> ,

>

> I have one word to say about this neurologist...NEXT! I hope you

can find a

> medical professional that will help you with solutions for your

child. Have

> you thought about giving the neurologist a copy of " The Late

Talker " so she

> can learn? I like the suggestion of always having a loaner copy

to lend to

> professionals, parents and ignorant family members. I know that

we aren't

> made of money but if you stick with this doctor, having an

educated medical

> professional will save you money in the end.

>

> You seem very knowledgeable and that is great for your son. I,

too, think

> about the children of parents who are still learning about all of

this.

>

> I know what you mean about wanting to tell pregnant women about

EFAs. I

> wish doctors would prescribe an EFA supplement right along with a

prenatal

> vitamin. Gosh...what would our population be like in 20 years if

all

> pregnant moms were taking EFA's??? I don't think SLPs would be

out of a

> job but the burden might be lessened.

>

> Just my opinion....

>

> Tricia Morin

> North Carolina

[Guest guest]

There is only one thing I tend to agree with about this

neurologist... even though she didn't exactly say it (I assume she

thinks it):

You can't be haunted by the " what ifs " with Nick. It is so much

easier said than done, I know. The stress is not good for you, not

good for your family, and only temporarily productive in Nick's

treatment. Sure, the guilt initially makes you dig and dig and work

and work in your attempts to find information, but it will end up

eating you alive and hindering Nick's progress in the long run. Not

exactly sure HOW, it is different in every case, but it will happen.

I applaud your guts to even bring these topics UP with their docs.

Many just keep quiet.

Pam

still feeling guilty about Ian's apraxia!

> > ,

> >

> > I have one word to say about this neurologist...NEXT! I hope

you

> can find a

> > medical professional that will help you with solutions for your

> child. Have

> > you thought about giving the neurologist a copy of " The Late

> Talker " so she

> > can learn? I like the suggestion of always having a loaner copy

> to lend to

> > professionals, parents and ignorant family members. I know that

> we aren't

> > made of money but if you stick with this doctor, having an

> educated medical

> > professional will save you money in the end.

> >

> > You seem very knowledgeable and that is great for your son. I,

> too, think

> > about the children of parents who are still learning about all

of

> this.

> >

> > I know what you mean about wanting to tell pregnant women about

> EFAs. I

> > wish doctors would prescribe an EFA supplement right along with

a

> prenatal

> > vitamin. Gosh...what would our population be like in 20 years

if

> all

> > pregnant moms were taking EFA's??? I don't think SLPs would be

> out of a

> > job but the burden might be lessened.

> >

> > Just my opinion....

> >

> > Tricia Morin

> > North Carolina