Worried that new Dr. will change Dx

March 28, 2011

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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