Re: New and with questionable diagnosis

September 20, 2004

Debbie,

Run, don't walk, away from this Dr!! Find a new one! He is clearly not

interested or involved in your situation. The attitude of " let's ignore

a possibly delay/disability and hope it goes away in 9 months " is

ridiculous! With autistic spectrum disorders, the sooner you start

intervention, the better the prognosis for a child's success in the

world. The longer you wait, the more you'll regret it later. We

postponed getting our daughter diagnosed for about a year, and then it

took me about 9 months after that to get services set up. I regret

losing that 1.9 year all the time! That's 1.9 years that all the other

children progressed and my daughter didn't. Now she has all that extra

catching up to do, which she does at a slower pace anyway, even with

services!

I suggest to please go to another doctor, as soon as possible, and get a

real diagnosis. If it's not autism spectrum but something else -- great!

At least you'll know, and can treat whatever it is quickly and hopefully

effectively, instead of dealing with wait-and-see for another 9 months.

Where are you located? Maybe people on this list can help you find a

good dr if you tell us where you live...

Inna.

Pittsburgh, PA

Message: 4

Date: Sun, 19 Sep 2004 21:48:33 -0000

Subject: New and with questionable diagnosis

I am very new with all this. One month ago we took our 3 year old

daughter to a delayed behavioral specialist and was told possible

autism. Went through all the hoops of evals, I read up of course

everything I could in the meantime and I truly believe she has many

characteristics of HFA. We go back in today for the offical

diagnosis and we get Communication disorder with autistic traits and

see him again in 9 months. He didn't feel good labeling her

autistic now and I guess I was very glad of that and he is hoping

her " traits " or characterists will go away in 9 mos. Has this

happened to anyone else? I feel numb!

He, the doctor was late into the our appt. because he didn't have

the labs back from one month ago!!!!! He also was adding up our

GARs scores that we had dropped off a week ago so he would have them

early so he wouldn't be scrambling like he was today. And then

after our appt was near the end, he said our daughter needed an eye

appt. to check for degenerative whatever behind her eyes, and I

said " Excuse me what was my appt. 2 weeks ago up here for to your

opthalmologist " oh, he says and digs for the papers. I also mention

what the OT in his hospital advised for more therapy with pressure

and desensitizing and he looked bland and said " did they say that? "

and he said that might help. " I feel like a fool now because it

does seem he wasn't at all up to our daughter's best interest at all

that day. They, the office, just finished moving into a brand new

office within the week. Office mixup???? Do I get a second opinion

with a neurologist?

September 21, 2004

Deb, so sorry to hear you're getting the runaround. I was told Allie

might just have characteristics due to severe sensory issues, but

she wasn't quite 2 yrs old when we got the first dx. He saw her 6

mos later to see how her behavior after regular OT was, she was

definitely autistic, but mildly-moderate.

It sounds like your doc might just be confused because of the move,

but it doesn't help when it's your daughter's life that's up for the

dx. I would suggest seeing a neuro, just for the second and perhaps

to check for any other suspected issues. Sometimes one doc might see

something another misses.

With proper support (regardless of official dx) your daughter will

go far in life. If she has some traits and you can get all over the

biological stuff, get her some good therapy stuff (OT/PT/speech,

etc) she might lose a significant amount of her issues. It's

overwhelming and frustrating to get the runaround, but stick with

it. We've all been there!

Debi

September 21, 2004

Deb, so sorry to hear you're getting the runaround. I was told Allie

might just have characteristics due to severe sensory issues, but

she wasn't quite 2 yrs old when we got the first dx. He saw her 6

mos later to see how her behavior after regular OT was, she was

definitely autistic, but mildly-moderate.

It sounds like your doc might just be confused because of the move,

but it doesn't help when it's your daughter's life that's up for the

dx. I would suggest seeing a neuro, just for the second and perhaps

to check for any other suspected issues. Sometimes one doc might see

something another misses.

With proper support (regardless of official dx) your daughter will

go far in life. If she has some traits and you can get all over the

biological stuff, get her some good therapy stuff (OT/PT/speech,

etc) she might lose a significant amount of her issues. It's

overwhelming and frustrating to get the runaround, but stick with

it. We've all been there!

Debi

September 21, 2004

Deb, so sorry to hear you're getting the runaround. I was told Allie

might just have characteristics due to severe sensory issues, but

she wasn't quite 2 yrs old when we got the first dx. He saw her 6

mos later to see how her behavior after regular OT was, she was

definitely autistic, but mildly-moderate.

It sounds like your doc might just be confused because of the move,

but it doesn't help when it's your daughter's life that's up for the

dx. I would suggest seeing a neuro, just for the second and perhaps

to check for any other suspected issues. Sometimes one doc might see

something another misses.

With proper support (regardless of official dx) your daughter will

go far in life. If she has some traits and you can get all over the

biological stuff, get her some good therapy stuff (OT/PT/speech,

etc) she might lose a significant amount of her issues. It's

overwhelming and frustrating to get the runaround, but stick with

it. We've all been there!

Debi

September 22, 2004

From: Barbara

To: Autism_in_Girls

Sent: Wednesday, September 22, 2004 7:14 AM

Subject: Re: New and with questionable diagnosis

Hi Debbie,

I'm new to the group and it's my first email. If you believe she's delayed

get her into therapy ASAP. The dx is not important.

I knew my daughter was delayed at 2 years old and was told not all children

develop the same. Let's wait the pediatrician said.

She wasn't diagnosed until a month after her 3rd birthday. She was diagnosed

as PDD-NOS. She only used scripted speech and had

her issues. You can also see a child psychologist for another opinion.

Two years later I can kick myself for not taking her to another doctor. As a

first time mom I didn't know the signs and obviously neither did

my pediatrician. She's doing great now and still in therapy. I've used the

Little Gym as OT since it's way cheaper, free music classes at local libraries,

she's been in Kindermusik for 2 years now and of course lots of speech and

pragmatic group therapies. It hasn't been cheap but it's so worth it. I love

to hear my daughter's voice whether it's scripted speech or not! She's now in a

mainstreamed kindergarten class with an aid and thriving.

I hope this helps! Take care and be well. God bless!

Barbara

Hannah's mom

Coral Springs, Florida

New and with questionable diagnosis