Re: Worried that new Dr. will change Dx

[Guest guest]

hi- i feel your pain!

My son is 6.5 yrs old. He is dx with mild Asperger's/HFA, ADHD, SPD and

anxiety. Our 1st neuro would not acknowldege the Asperger's because my son was

making eye contact! lol Ok- he made eye contact for about 5 seconds and you

could see how difficult it was for him to do. But the ped neuro based his

entire dx on that fact alone! Also- he was seeing him at a point where we had

been going to OT and behavior therapy twice a week for 8 months. We had come a

long way at that point. When we saw a Dev Ped 3 months later- she was saying he

was right in the middle of PDD-NOS and Asperger's and she too cited the eye

contact thing. When I mentioned that we have been wroking intensely on that for

awhile- she said " good point " and then said in her report that he was in fact

Asperger's.

The thing is- Asperger's symptoms for us at least seem to fluctuate from day to

day. Some days we see many of the traits, soem days nto so much. It also

fluctutates from hour to hour, minute to minute at times. It all depends on so

many different factors. So, my point is that what one doctor sees one day,

another may not see on another day. We ended up getting a 2nd opinion from

another Ped. Neuro and he took his time in the appt to really look at our son

and was able to observe those Aspie traits. And while our son is dx as having

Asperger's- this dr said that he is very slightly on the spectrum- but he is

still on the spectrum. He said that to the untrained eye- it is so subtle that

many do not notice it at all. (and this is often the case. Many of our

friends, family, etc are/were shocked to learn that our son has Asperger's).

Anyway- I wish I could be more helpful in giving you a description of the

differences between each. I do know that there are several kids in my sons

class that are dx as PDD-NOS and they still get services through their IEP.

Good luck and stay strong. You know your child better than anyone else. Keep

reminding yourself and the drs of this fact.

>

> Today we have a first time appt. with a Neurologist who was referred to us by

a new pediatrician we saw 2 weeks ago. The Aspergers diagnosis was given to us

by a child Psych in Aug. (son was age 6) The new ped seems very good and is

being thorough but I'm worried because after meeting my son he said that while

my son has some aspergers traits, he doesn't feel my son has " full blown "

aspergers and so he's sending us to the neuro. (If he met my son 3,2, even 1

years ago, he would have seen all the full blown traits!!!)

>

> The appt. is today, late afternoon and I'm worried that in 5 minutes (I'm

being sarcastic - the appt. is longer!) the Neuro is not going to see the

difficulties my son has when he is in social situations. And he's not going to

know that age 3, 4 and 5 my son's problems were much more severe. I don't know

what to do if he wants to change the Dx from aspergers to perhaps PDD-NOS. I'm

not sure how that will affect us and all that we've accomplished with IEP's,

family etc . . .

>

> I feel like it took 3 years to finally get an accurate DX as we kept falling

into the hands of professionals that weren't experienced with ASDs and continued

to miss it within my son. The would only look for eye contact for example - yep,

he has eye contact (only sometimes) or they would look for rain main type

behavior etc. Now finally we know what we are dealing with, we feel the dx is

correct, even though it is now more mild. We don't want to have to go backwards

with a dx.

>

> Can anyone explain to me the difference between PDD-NOS and Apergers? Is PDD

NOS for when the Drs can't quite put a finger on it and don't know what they are

dealing with yet or is it when the symptoms are so mild they bump it down to NOS

dx.?

>

> People with PDD NOS - with children around 6 yrs of age, do they feel the dx

is helpful or even more problematic when trying to explain to outsiders etc.

because it's not quite as defined?

>

> Also my son has exhibited all the symptoms of ADHD - impulsivity so I'm sure

he'll address that as well.

>

> Any comments or help about exprience with Neuro's and or PDD-NOS would be

greatly appreciated! Thank you.

>

[Guest guest]

From my (albeit limited) understanding, a diagnosis of PDD-NOS is used when the

child obviously falls somewhere on the spectrum, but does not meet the specific

criteria for either AS or classic autism.

>

> Today we have a first time appt. with a Neurologist who was referred to us by

a new pediatrician we saw 2 weeks ago. The Aspergers diagnosis was given to us

by a child Psych in Aug. (son was age 6) The new ped seems very good and is

being thorough but I'm worried because after meeting my son he said that while

my son has some aspergers traits, he doesn't feel my son has " full blown "

aspergers and so he's sending us to the neuro. (If he met my son 3,2, even 1

years ago, he would have seen all the full blown traits!!!)

>

> The appt. is today, late afternoon and I'm worried that in 5 minutes (I'm

being sarcastic - the appt. is longer!) the Neuro is not going to see the

difficulties my son has when he is in social situations. And he's not going to

know that age 3, 4 and 5 my son's problems were much more severe. I don't know

what to do if he wants to change the Dx from aspergers to perhaps PDD-NOS. I'm

not sure how that will affect us and all that we've accomplished with IEP's,

family etc . . .

>

> I feel like it took 3 years to finally get an accurate DX as we kept falling

into the hands of professionals that weren't experienced with ASDs and continued

to miss it within my son. The would only look for eye contact for example - yep,

he has eye contact (only sometimes) or they would look for rain main type

behavior etc. Now finally we know what we are dealing with, we feel the dx is

correct, even though it is now more mild. We don't want to have to go backwards

with a dx.

>

> Can anyone explain to me the difference between PDD-NOS and Apergers? Is PDD

NOS for when the Drs can't quite put a finger on it and don't know what they are

dealing with yet or is it when the symptoms are so mild they bump it down to NOS

dx.?

>

> People with PDD NOS - with children around 6 yrs of age, do they feel the dx

is helpful or even more problematic when trying to explain to outsiders etc.

because it's not quite as defined?

>

> Also my son has exhibited all the symptoms of ADHD - impulsivity so I'm sure

he'll address that as well.

>

> Any comments or help about exprience with Neuro's and or PDD-NOS would be

greatly appreciated! Thank you.

>

[Guest guest]

It depends if the doctor is a good one, but I do not know many that will give a diagnosis based on a couple minutes witha child, usually they look at all previous tests and history and then parent report as well. Just be honest and make sure he has copies of the previous diagnosis and testing. You can also mention that he has made some progress during treatment and that he used to exhibit A,B,and C and now you are seeing less but it still happens at this time or that time. New doctors are scary, but if you don't like them, don't go back. It took me years to find the dream team of professionals whom we have now come to trust. It was the third neruologist my son had that really got him and what he needed. It was the second psychiatrist. thankfully we lucked out with the pediatrician and

psychologist he had from the beginning and we have seen a couple different OTs, soem better with him than others, to be sure.

From: SoCalVal <socalval@...> Sent: Mon, March 28, 2011 11:55:52 AMSubject: ( ) Worried that new Dr. will change Dx

Today we have a first time appt. with a Neurologist who was referred to us by a new pediatrician we saw 2 weeks ago. The Aspergers diagnosis was given to us by a child Psych in Aug. (son was age 6) The new ped seems very good and is being thorough but I'm worried because after meeting my son he said that while my son has some aspergers traits, he doesn't feel my son has "full blown" aspergers and so he's sending us to the neuro. (If he met my son 3,2, even 1 years ago, he would have seen all the full blown traits!!!)The appt. is today, late afternoon and I'm worried that in 5 minutes (I'm being sarcastic - the appt. is longer!) the Neuro is not going to see the difficulties my son has when he is in social situations. And he's not going to know that age 3, 4 and 5 my son's problems were much more severe. I don't know what to do if he wants to change the Dx from aspergers to perhaps PDD-NOS. I'm not sure how that will affect us and all that

we've accomplished with IEP's, family etc . . . I feel like it took 3 years to finally get an accurate DX as we kept falling into the hands of professionals that weren't experienced with ASDs and continued to miss it within my son. The would only look for eye contact for example - yep, he has eye contact (only sometimes) or they would look for rain main type behavior etc. Now finally we know what we are dealing with, we feel the dx is correct, even though it is now more mild. We don't want to have to go backwards with a dx. Can anyone explain to me the difference between PDD-NOS and Apergers? Is PDD NOS for when the Drs can't quite put a finger on it and don't know what they are dealing with yet or is it when the symptoms are so mild they bump it down to NOS dx.? People with PDD NOS - with children around 6 yrs of age, do they feel the dx is helpful or even more problematic when trying to explain to outsiders etc. because it's

not quite as defined?Also my son has exhibited all the symptoms of ADHD - impulsivity so I'm sure he'll address that as well. Any comments or help about exprience with Neuro's and or PDD-NOS would be greatly appreciated! Thank you.

[Guest guest]

It is hard to DX Asperger at age 6, kids at age 6 do have

restricted interests.

For AS they want to developmental delay in socializing,

emotional development and restricted interests.

Our neurologist called our daughter PDD-NOS but our psychiatrist (treating her

anxiety) called it AS. The child psychiatrist was

not splitting hairs.

We also had a neuropsychological report done at age 9 that

gave standard scores for areas and there were many deficits

in social cognition, organization and attention. The

neuropsyc also did not split hairs and called it AS

and wrote an excellent report stating all the services

that she needed.

Some doctors don'r make it easy. They have no idea what

we go through.

When I saw the neuropsychologist I brought audio tapes

of social interaction, in essence I made a case for

AS as in a court of law. The neurologist did not

give me much time, our child psychiatrist does

and writes letters, but I have to pay it all out

of pocket.

Pam

Pam

and

a

>

> Today we have a first time appt. with a Neurologist who was referred to us by

a new pediatrician we saw 2 weeks ago. The Aspergers diagnosis was given to us

by a child Psych in Aug. (son was age 6) The new ped seems very good and is

being thorough but I'm worried because after meeting my son he said that while

my son has some aspergers traits, he doesn't feel my son has " full blown "

aspergers and so he's sending us to the neuro. (If he met my son 3,2, even 1

years ago, he would have seen all the full blown traits!!!)

>

> The appt. is today, late afternoon and I'm worried that in 5 minutes (I'm

being sarcastic - the appt. is longer!) the Neuro is not going to see the

difficulties my son has when he is in social situations. And he's not going to

know that age 3, 4 and 5 my son's problems were much more severe. I don't know

what to do if he wants to change the Dx from aspergers to perhaps PDD-NOS. I'm

not sure how that will affect us and all that we've accomplished with IEP's,

family etc . . .

>

> I feel like it took 3 years to finally get an accurate DX as we kept falling

into the hands of professionals that weren't experienced with ASDs and continued

to miss it within my son. The would only look for eye contact for example - yep,

he has eye contact (only sometimes) or they would look for rain main type

behavior etc. Now finally we know what we are dealing with, we feel the dx is

correct, even though it is now more mild. We don't want to have to go backwards

with a dx.

>

> Can anyone explain to me the difference between PDD-NOS and Apergers? Is PDD

NOS for when the Drs can't quite put a finger on it and don't know what they are

dealing with yet or is it when the symptoms are so mild they bump it down to NOS

dx.?

>

> People with PDD NOS - with children around 6 yrs of age, do they feel the dx

is helpful or even more problematic when trying to explain to outsiders etc.

because it's not quite as defined?

>

> Also my son has exhibited all the symptoms of ADHD - impulsivity so I'm sure

he'll address that as well.

>

> Any comments or help about exprience with Neuro's and or PDD-NOS would be

greatly appreciated! Thank you.

>

[Guest guest]

In our case, my dd was diagnosed PDD-NOS (at age 2.5 years) because the

psychologist couldn't put a finger on it. She didn't meet all of the diagnostic

criteria for autism, yet she was clearly showing autistic traits. Now at age

5.5 years, her special ed teachers regard her as an aspie.

I still write PDD-NOS on the health history forms, such as the one I filled out

for Daisy Girl Scouts. I doubt that anyone knows what it really means.

Sometimes I prefer it that way. Outsiders don't see autism when they look at

her. So they look at me funny if I tell them she has autism. I even had one

mom who's a teacher say, " Maybe she'll grow out of it. " I wish.

Her next IEP is tomorrow. Her teacher hasn't given me a copy of her goals ahead

of time, so I'm worried that they will try to cut back on her speech and OT

services. Her social deficits aren't as obvious now. The teacher says she's

fine academically, but they are glossing over her struggles with writing. Her

problems in kindergarten are looking more like ADHD, so maybe they'll start

suggesting meds. Shudder.

You're in San Diego, I think? My daughter's in the Poway school district. What

sort of services does your son get?

>

> Today we have a first time appt. with a Neurologist who was referred to us by

a new pediatrician we saw 2 weeks ago. The Aspergers diagnosis was given to us

by a child Psych in Aug. (son was age 6) The new ped seems very good and is

being thorough but I'm worried because after meeting my son he said that while

my son has some aspergers traits, he doesn't feel my son has " full blown "

aspergers and so he's sending us to the neuro. (If he met my son 3,2, even 1

years ago, he would have seen all the full blown traits!!!)

>

> The appt. is today, late afternoon and I'm worried that in 5 minutes (I'm

being sarcastic - the appt. is longer!) the Neuro is not going to see the

difficulties my son has when he is in social situations. And he's not going to

know that age 3, 4 and 5 my son's problems were much more severe. I don't know

what to do if he wants to change the Dx from aspergers to perhaps PDD-NOS. I'm

not sure how that will affect us and all that we've accomplished with IEP's,

family etc . . .

>

> I feel like it took 3 years to finally get an accurate DX as we kept falling

into the hands of professionals that weren't experienced with ASDs and continued

to miss it within my son. The would only look for eye contact for example - yep,

he has eye contact (only sometimes) or they would look for rain main type

behavior etc. Now finally we know what we are dealing with, we feel the dx is

correct, even though it is now more mild. We don't want to have to go backwards

with a dx.

>

> Can anyone explain to me the difference between PDD-NOS and Apergers? Is PDD

NOS for when the Drs can't quite put a finger on it and don't know what they are

dealing with yet or is it when the symptoms are so mild they bump it down to NOS

dx.?

>

> People with PDD NOS - with children around 6 yrs of age, do they feel the dx

is helpful or even more problematic when trying to explain to outsiders etc.

because it's not quite as defined?

>

> Also my son has exhibited all the symptoms of ADHD - impulsivity so I'm sure

he'll address that as well.

>

> Any comments or help about exprience with Neuro's and or PDD-NOS would be

greatly appreciated! Thank you.

>

[Guest guest]



That is so nice of you to ask. I apologize in advance for this being so long. I need to let you know that I literally don't have anyone to talk to. This is it - this group. So when it rains, it pours! : )

Well, I'm still trying to process it in my head. I don't think it went well. I think the the Dr. was being a jerk but in such a way that was hard to tell because he did it with a smile ... do you know what I mean? He was very sarcastic at times also.

I don't want to be nieve (I tend to be by nature) and trusting just because he's a DOCTOR - Is it possible that a Neurologist doesn't actually know a lot about Aspergers? His office was full of info about Epilepsy. I believe he specializes in that.

Here's how some of our visit went:

Dr. So here you are with this kid who's wild, jumpin and running around everywhere, acting crazy and you don't know what to do about it.....

Me uhhh, no. I didn't say that.

Dr. Oh! So he doesn't ever act like that? Then what does he act like?

Me Well, there is a lot of different behaviors. It was worse when he was 3, some improvements since then... here, I brought a time line with the specific behaviors that appeared....

Dr. I won't have time to read that.....I don't want to go back that far - he's almost 7!!! Tell me what he was like last weekend.

Me Well, last weekend wasn't so much a problem ... we went to a science festival which he enjoys so he was happy....

Dr. Well maybe he behaved better because Dad was around.

Me Ha, no. You're really drawing a lot of conclusions. My husband works weekends .....

Dr. Oh! okay! So how do you handle it when your son acts up/misbehaves?

Me Well for about 2 years now we've used a reward system - positive reinforcement for good behavior...

Dr. Oh, how nice. So he controls you, you bribe him. I see how it works.....

Me sigh..... no, it means we reward him when he is behaving - not when he is not behaving.

Another time he asked about family history. Who else has aspergers in the family. I told him well we've been trying to figure that out. It's quite possible that someone does but that it was never diagnosed.

Dr. That's unlikely.

Me Really? I would think it's pretty common. Past generations weren't as likely to openly discuss things like this - not in my family anyways....

So he had me go through some family members that may have had behavior and social problems. I mentioned my cousin in France (female) who has several degrees, speaks 6 languages, never had friends, very quirky......

He interrupted me and said - no, not girls, we're only interested in boys. (Was he implying that girls don't have Asperger's?)

He asked when did he lose his speech? I said that he didn't lose his speech. So he told me well there's specific criteria that we look for. If he lost his speech - starting at 18 months of age - than we'd have reason to look into this. Was he implying that a person can only have Aspergers if they lost their speech? Is that true? I thought that that's the difference of Autism (high functioning) vs Aspergers. Aspergers for those that have speech. Please tell me if I'm wrong. I'm trying to figure this out.

He was checking my son's balance by pushing/tapping in various area of his chest and shoulders but then he made this odd commnet that really bothered me. He said with each push "So you like" push "doing this" push " to your baby sister" push "don't you?" I was like what the heck? He keeps assuming all these behaviors - mostly related to ADHD. I said earlier that my son got in a lot of trouble at school with being silly, annoying the kids, poking them in line etc. But he's not the aggressive type. I didn't appreciate him saying that to my son, who thought that was funny. He doesn't do that to his baby sister, nor do I want him to start thank you very much!

At the end he said he wants to send him for blood work to check chromosomes to rule out anything else. He admitted he doesn't think he'll find anything but it's good to do. Hmmmm.

He said he doesn't think he'll ever be able to give a diangosis because we don't know where it came from. We don't know our family history. Hmmmm. And then he sent us home with a trial pack of Intuiv for ADHD. Told us to come back in 2 months.

My world is turned upside down. I believe my son has ADHD but it's also more than that. We were given the Aspergers diagnosis by a child psych. It makes sense because he has sensory issues, anxiety, tantrums, high IQ, OCD behaviro, Heck he has all the symptoms and behaviors that everyone here posts about on a daily basis and you all have Aspergers dx for your children. Also I took in the report from the Speech Pathologist from school because that really showed all his social/pragmatic defecits. Plus let's remember my son's behavior was sooo bad at school that we finally removed him to homeschool. But now here is this Neuro who acted like it was a joke that we were even there. He didn't take me seriously.

Is it possible the Speech Pathologist got it wrong? Is it possible the child psych got it wrong? Do I go on fighting and insisting he has Asperger's because that helps explain his behavior the best way? Or do I just give up and say well he has ADHD but also some traits of Aspergers?

I just don't know what to do or how to feel anymore. Meanwhile my son has had the worst past 2 days. Sooooooooooo defiant. So emotional. Event the reward charts aren't working! If I don't know what I'm dealing with than then I don't know how to properly address it!

I'm so sorry this is so long.

Thanks for reading. Please comment.

( ) Re: Worried that new Dr. will change Dx Date: Tuesday, March 29, 2011, 10:38 AM

From my (albeit limited) understanding, a diagnosis of PDD-NOS is used when the child obviously falls somewhere on the spectrum, but does not meet the specific criteria for either AS or classic autism.>> Today we have a first time appt. with a Neurologist who was referred to us by a new pediatrician we saw 2 weeks ago. The Aspergers diagnosis was given to us by a child Psych in Aug. (son was age 6) The new ped seems very good and is being thorough but I'm worried because after meeting my son he said that while my son has some aspergers traits, he doesn't feel my son has "full blown" aspergers and so he's sending us to the neuro. (If he met my son 3,2, even 1 years ago, he would have seen all the full blown traits!!!)> > The appt. is today, late afternoon and I'm worried that in 5 minutes (I'm being sarcastic - the appt. is longer!) the Neuro is not going to see the difficulties my son has when he is in social situations. And he's not going to know that age 3, 4 and 5 my son's problems were much more severe. I don't know what to do if he wants to change the Dx from aspergers to perhaps PDD-NOS. I'm not sure how that will affect us and all that we've accomplished with IEP's, family etc . . . > > I feel like it took 3 years to finally get an accurate DX as we kept falling into the hands of professionals that weren't experienced with ASDs and continued to miss it within my son. The would only look for eye contact for example - yep, he has eye contact (only sometimes) or they would look for rain main type behavior etc. Now finally we know what we are dealing with, we feel the dx is correct, even though it is now more mild. We don't want to have to go backwards with a dx. > > Can anyone explain to me the difference between PDD-NOS and Apergers? Is PDD NOS for when the Drs can't quite put a finger on it and don't know what they are dealing with yet or is it when the symptoms are so mild they bump it down to NOS dx.? > > People with PDD NOS - with children around 6 yrs of age, do they feel the dx is helpful or even more problematic when trying to explain to outsiders etc. because it's not quite as defined?> > Also my son has exhibited all the symptoms of ADHD - impulsivity so I'm sure he'll address that as well. > > Any comments or help about exprience with Neuro's and or PDD-NOS would be greatly appreciated! Thank you.>

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[Guest guest]

I just gotta chime in with nothing helpful about that doctor other than 'What a moron!'

ok, thanks for letting me vent

Geneva