Re: OT: RESULTS OF EVALUATION

[Guest guest]

Well, we went to see the pediatric neurologist yesterday. He was a very

nice, intelligent man. He immediately got down on the floor and started

trying to get Dylan to warm up to him, which he did, and observed him and

asked me questions for a good 45 minutes. He concluded that other than

some toe-walking, which Dylan has always done because his left foot turns

in a bit, he doesn't feel that he shows any real signs of being on the

autistic spectrum at this time. He said he has excellent eye contact and

good social skills, and seems to be typical for a child who has no language

skills. I was hesitant to say " Oh thank goodness " because it didn't really

sit right with me. I said to the dr, " well what about his compulsive

clapping and sometimes odd body gestures " (example, clapping while turning

his head and his eyes to one side and leaning in that direction), and he

said that isn't something usually attributed to pdd or the autistic

spectrum, he seems to be just a kid who has an expressive speech problem,

not a receptive problem, because he seems to understand most of what is

being said. He wants to have an EEG done while Dylan is asleep to see if

he is having seizures, because I told him how Dylan sometimes spaces out

and stares off into space for a while, and he gave me the numbers to my

local school district with a referral to have a full speech and language

assessment as well as an educational assessment. He used the diagnosis

code 348.3, which is Encephalopathy, which is pretty vague (just means some

disorder of the brain). Well I don't quite know how to process all of

this, to be relieved and just move on or to go and get a second opinion.

Dylan has been on this diet (with a few cheats in the gluten dept.) for

about a month, (I put him on it after his pediatrician said he thought it

was PDD) and he is quite a bit better than when we started, but no language

improvements at all. If it weren't for the sometimes repetitive and

compulsive behaviors that I notice because I am his mother and I see

everything he does, not just 45 minutes of his day, I would accept this

wholeheartedly, but it just didn't quite satisfy me... not that I want him

to have a more difficult problem, and that's how I felt when I kept asking

questions, as if the doctor was thinking that I want him to be autistic or

something. I don't know. Thanks for listening, it felt good to get that

out.

[Guest guest]

Please keep me informed of the results to these tests. My son also

looks off into space, and does some weird gestures, like grabbing at

his hair while running, hopping in place of running when other kids

are around, and has some extreme tantrums (which has gotten better

since I eliminated nuts and citrus two days ago). Plus, he does not

use reciprocal speech - if you ask him a question he does not know

the answer to he tells you he is an engineer.

The Dev Psych I took him to on Tuesday said he does not have any

signs of PDD. She said he is DD, and that some intense therapy in a

playschool setting in my school district would catch him up. She

said he *might* have obessive/compulsive problems, but that she could

not diagnose that at age 3.

Because Ethan is already writing and spelling very small words, she

said his mind is 2 years ahead but his emotions/language are behind.

She said that he probably has anxiety which he expresses through

weird gestures. She told me that I should not expect a 3 year old to

show empathy, but my son can be down right hurtful and then laugh and

tell you he will do it again while giggling.

The signs she looked for before deciding he was not PDD is that he

will give eye contact - not when I ask him to look at me, but other

times, when he and I are getting along. At the session, Ethan was

able to converse about trains, and she told him she saw something

neat and pointed at it, and he went and got it. She said autistic

kids don't really engage like that.

Plus, when Ethan is staring off into space, you can distract him.

This was not always true. Last year before we took him off of cow's

milk, you could not get his attention, but now, if you talk to him,

it does break his concentration.

Still, I can't quite put my finger on it, but something is still

off. You know what I mean? I may have been chasing the wrong

squirrel in terms of PDD, but I am not convinced that it is normal

for a 3 year old to try and line up letters on the fridge in an exact

line, and then COMPLETELY freak out when one of the letters drop by a

fraction of an inch.

>

> Well, we went to see the pediatric neurologist yesterday. He was a

very

> nice, intelligent man. He immediately got down on the floor and

started

> trying to get Dylan to warm up to him, which he did, and observed

him and

> asked me questions for a good 45 minutes. He concluded that other

than

> some toe-walking, which Dylan has always done because his left foot

turns

> in a bit, he doesn't feel that he shows any real signs of being on

the

> autistic spectrum at this time. He said he has excellent eye

contact and

> good social skills, and seems to be typical for a child who has no

language

> skills. I was hesitant to say " Oh thank goodness " because it

didn't really

> sit right with me. I said to the dr, " well what about his

compulsive

> clapping and sometimes odd body gestures " (example, clapping while

turning

> his head and his eyes to one side and leaning in that direction),

and he

> said that isn't something usually attributed to pdd or the autistic

> spectrum, he seems to be just a kid who has an expressive speech

problem,

> not a receptive problem, because he seems to understand most of

what is

> being said. He wants to have an EEG done while Dylan is asleep to

see if

> he is having seizures, because I told him how Dylan sometimes

spaces out

> and stares off into space for a while, and he gave me the numbers

to my

> local school district with a referral to have a full speech and

language

> assessment as well as an educational assessment. He used the

diagnosis

> code 348.3, which is Encephalopathy, which is pretty vague (just

means some

> disorder of the brain). Well I don't quite know how to process all

of

> this, to be relieved and just move on or to go and get a second

opinion.

> Dylan has been on this diet (with a few cheats in the gluten dept.)

for

> about a month, (I put him on it after his pediatrician said he

thought it

> was PDD) and he is quite a bit better than when we started, but no

language

> improvements at all. If it weren't for the sometimes repetitive and

> compulsive behaviors that I notice because I am his mother and I see

> everything he does, not just 45 minutes of his day, I would accept

this

> wholeheartedly, but it just didn't quite satisfy me... not that I

want him

> to have a more difficult problem, and that's how I felt when I kept

asking

> questions, as if the doctor was thinking that I want him to be

autistic or

> something. I don't know. Thanks for listening, it felt good to

get that

> out.

[Guest guest]

On Fri, 15 Jun 2001 09:29:09 -0400 Amy_Bagnell@... writes:

Well I don't quite know how to process all

> of

> this, to be relieved and just move on or to go and get a second

> opinion.

**

It's great to hear that the doc thinks its just a speech delay, but

you're his mom and if you still feel like you want to go for a 2nd

opionion then go for it. Go with your gut " mommy " feelings. You have

nothing to lose by getting another opionion, however if later on down the

road without this 2nd opionion there is a problem, you'll have wasted

valuable time in getting your child extra needed services.

You mentioned Dylans pediatrician thought he might have PDD, so go get

another eval. and I wish the best for all those concerned.

in New York

*

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[Guest guest]

Amy:

I know from personal experience that it is best to go for a second

opinion. Don't want to scare you, but it is best to have two good opinions

than a bad one that turns out to be different in two years.

I would get in to see a developmental pediatrician who understands the

Autism Spectrum Disorder much better than a neurologist.

This is just my two cents.

LOL,

Sharon

[Guest guest]

Yes, you definately need to get a second opinion. My son is very high

functioning and recently has been reclassified as " Aspergers " . The

description below fits him to a " T " with the exception of being hyperlexic.

He has began to sight read, but nothing phenomonal. However, he has had

weird quirks for sometime. He prefers everything to be red, if there is a

choice in color. He likes to count things and arrange them to be counted.

He also has a huge fascination for noting cars and what type they are.

Right now PT cruisers are the big fascination, along with campers. His

other quirks are things like memorizing the phonics table and performing the

alphabet backwards. Also, since the age of 18 months he's been very fixated

on Zoo animals. However, when he goes in for evaluations, this isn't seen.

He's viewed as having good eye contact, showing excellent verbal skills,

great cognitive skills, good social and emotional skills and no outwardly

obvious autistic characteristics, ie; hand flapping, noise making, poor eye

contact, adversion to touch, screaming, obsessive behavior, or repetitive

anything! He, of course, doesn't show his stubborness to have things his

way! Therefore, we are always told he's not on the specturm. I know

otherwise, because I spend 24/7 with the kid. Here is what his recent eval

said:

" showed good eye contact. His articulation was very good. He used

good, full sentences. He expressed his emotions quite well, but he seemed

like he needed to have his own rules, and that is more characteristic of

Asperger's Syndrome. I did not see any clear-cut autistic behavior while he

was in the exam room. Diagnosis: Probable Asperger's syndrome (?) "

She actually put the question mark after the dx, because she wasn't totally

convinced he was on the spectrum!

Anyway, if you never get the dx, so what. I believe if the parents knows

the child is, thats good enough, unless you need the dx to receive special

therapy or services. We needed if for Medicaid, and used it to provide free

in home therapy.

a - Madison WI

>I have a friend here

> whose son is 4 and also autistic, but high functioning - he is hyperlexic

> (can READ anything, and has since he was not even 2), and can write words,

> knows the state capitals, can put together a puzzle of the states normally

> as well as upside down, knew the alphabet forward AND backward when he was

> just barely 2, counted to 100 before he was 2 and spends tons of time just

> lining up letters... all of these things were self taught. He is verbal.

He

> is obvioulsy very intelligent beyond his age group, but is autistic

> nonetheless with other behaviors that give him the diagnosis.

[Guest guest]

>

> Well, we went to see the pediatric neurologist yesterday. He was a

very

> nice, intelligent man. He immediately got down on the floor and

started

> trying to get Dylan to warm up to him, which he did, and observed

him and

> asked me questions for a good 45 minutes. He concluded that other

than

> some toe-walking, which Dylan has always done because his left foot

turns

> in a bit, he doesn't feel that he shows any real signs of being on

the

> autistic spectrum at this time.

You know what? It took me a year to accept that was autistic-I

had let a psycologist tell me he wasn't, and I so strongly wanted to

believe it, that I disregarded the other dr diagnosis like if it

wasn't a competent one(that was stupid, but it is a done deal)-

But I feel that maybe, just to get you to " feel better " , you should

do all the tests needed, and also the other evaluations; but also get

a second opinion w/o telling this second dr. of the first dr.

diagnosis-and maybe is not either important to tell the first dr.

that you are going to get a second opinion-

And in any matter it wouldn't hurt. Maybe another opinion may get you

to conferm the diagnosis, or maybe it will just give you a different

set of tests or something else to look at....?!?

That's what I would do if I wasn't completely satisfied.

Good luck, and yes, we're all in the same boat and paddling

together :-)

Cristina-WA

(mom to 4 1/2 with autism, and & 21 mo twins NT)

[Guest guest]

, I am by no means an expert (just a mommy) but I have to say that I

think you have a legitimate concern! I'd wonder about PDD too! Could you

get a second opinion? Keep us posted!

Hugs, H, mommy to 3 1/2 yrs, PDD; and 2 yrs, NT

My son also

> looks off into space, and does some weird gestures, like grabbing at

> his hair while running, hopping in place of running when other kids

> are around, and has some extreme tantrums (which has gotten better

> since I eliminated nuts and citrus two days ago). Plus, he does not

> use reciprocal speech - if you ask him a question he does not know

> the answer to he tells you he is an engineer.

>

She told me that I should not expect a 3 year old to

> show empathy, but my son can be down right hurtful and then laugh and

> tell you he will do it again while giggling.

>

Still, I can't quite put my finger on it, but something is still

> off. You know what I mean? I may have been chasing the wrong

> squirrel in terms of PDD, but I am not convinced that it is normal

> for a 3 year old to try and line up letters on the fridge in an exact

> line, and then COMPLETELY freak out when one of the letters drop by a

> fraction of an inch.

>

>

>

[Guest guest]

She mentioned Asperbergers and told me she didn't even think she

could 'go there' with that diagnosis. In some ways, I feel she was

thinking I wanted to get a label to put on my son. I mean, if he

doesn't have the symptoms for something, why would I want him to have

the label????? But it was the tone of voice, like, " Well, I am just

not comfortable saying he is PDD - that would mean I felt his delays

were lifelong. "

I have him set up for an evaluation at an actual autistic center in

August. I will not cancel that appt - it took me 9 months to get

it. I was hoping that getting some help 2 months prior to this appt

might give me some advice, but you are right, I wasn't give much to

work with.

I am starting to feel really hopeless. Medically, we can't seem to

control the loose stools with diet. We are waiting for test results

back from Great Plains. And a couple of my friends have told me they

think I am making mountains out of molehills. I mention his

behaviors and they tell me that ALL kids get obsessed about things.

But I don't feel right about the way my child is acting, and you are

right, I have to trust my instincts.

>Just my own opinion, but I

> would look into another opinion. Maybe try to find a developmental

> Pediatrician or pediatric neurologist this time instead of a

psychologist,

> might provide more insight or at least a different perspective.

>

>

[Guest guest]

Hi,

Your doctor visit sounded a lot like ours. My son sees a ped. neurologist

who specializes in kids with autism and has an excellent reputation and he

always tells me every time he sees our son " This has to be something else -

he's too social to be autistic. " Well if it is something else we sure can't

figure out what! My son scores as severely autistic on the CARS test. If

you can get someone to do this rating test with you it might answer a lot of

your questions. It covers areas like relating to people, imitation, body

use, object use, adaptation to change, visual response, listening response,

emotional response, taste, smell and touch response and use, fear or

nervousness, verbal communication, nonverbal communication, activity level

and level and consistency of intellectual response. It was an eye opening

experience (and pretty depressing too) when I did this with our son's school

psychologist. It really pinpoints the areas where ASD kids are so different

from their peers. Lead with your mom intuition here and keep searching for

a diagnosis that you know correctly identifies your child. It always amazes

me that a person who sees my child for an hour once a year feels he knows

enough to accurately diagnosis him -- even if he is a PhD!

Donna

[Guest guest]

i am going to get another opinion. i just got off the phone with my school

district's child study team and they aren't going to be able to do his

speech and language assessment until september when the team comes back

from summer break! this is so frustrating, i am not going to just let this

simmer all summer long while he could be getting some kind of help--have

any of you gone through this waiting list nonsense? i definitely am going

to take him to another doctor-maybe another doctor will see what i am

talking about and get Dylan some help soon.

[Guest guest]

Yes. An assessment from one of the two autistic centers takes 9

months - mine will be in August. A consultation with the Pediatric

Gastero. will occur at the end of July - took me 3 months. A school

district assessment on my son will occur at the end of July as well -

I made the appt in May, so 3 months. The child dev psych that said

Ethan did not have anything related to Autism?.....

24 hours.

>

> i am going to get another opinion. i just got off the phone with

my school

> district's child study team and they aren't going to be able to do

his

> speech and language assessment until september when the team comes

back

> from summer break! this is so frustrating, i am not going to just

let this

> simmer all summer long while he could be getting some kind of help--

have

> any of you gone through this waiting list nonsense? i definitely

am going

> to take him to another doctor-maybe another doctor will see what i

am

> talking about and get Dylan some help soon.

[Guest guest]

what are these autistic centers you speak of and where are they located? i

am in new jersey. i wonder if there are any such places around here. in

the meanwhile i am in the process of getting a referral to a speech

therapist (who is away at a conference until June 25th) to get an

evaluation appointment, to eventually get him some speech therapy this

summer while awaiting his school district evaluation. i just hate the idea

of wasting time that he could be getting some help.

[Guest guest]

I was told about the austistic centers through my parent educator.

Call a public school and see if you can find out about a program

called:

Parents as Teachers.

They will hook you up with services (I got free speech therapy for my

son for 5 months) and get you in contact with what is going on in

your area.

>

> what are these autistic centers you speak of and where are they

located? i

> am in new jersey. i wonder if there are any such places around

here. in

> the meanwhile i am in the process of getting a referral to a speech

> therapist (who is away at a conference until June 25th) to get an

> evaluation appointment, to eventually get him some speech therapy

this

> summer while awaiting his school district evaluation. i just hate

the idea

> of wasting time that he could be getting some help.

[Guest guest]

Dylan is 2 years, 8 months old. His 3rd birthday is October 5. He can't

start the preschool until he is 3 anyway, so hopefully everything will go

through around that time and not too much later.

[Guest guest]

i am going to investigate that--my dr said that we'd probably be on the

waiting list until his birthday and then wouldn't be eligible, but it can't

hurt to try. i have been very pleased with dylan's ability to focus and

understand the past few days. i am amazed now at how little it takes to

give me mounds of encouragement.