Thoroughly Confused - long

[Guest guest]

I am at my wits end with doctors. I wish someone could just tell me

what is going on with my twins - and be accurate!

Their pede noticed behavior issues at their 2yo check up & suggested

we see a neuro he referred us to. Waited THREE months to get into

the guy and he spent a whopping TEN minutes with us for BOTH kids.

Said they both had PDDNOS and possible ADHD. Referred us to the

regional center.

Got to the regional center for a psych eval. TEN months after their

2nd bday. Psych said 1 child has PDDNOS and the other autism.

Didn't mention ADHD at all.

Went to a DAN dr. to find out about food allergies and alternate

treatment. He said the child with PDDNOS has either VERY mild PDDNOS

or SEVERE ADHD and that the other child probably does have autism.

We are in the middle of doing a bunch of testing for both boys

through the DAN.

The regional center has cut off all in-home services for the boys

because they are now 3 and need to go to the school district. I

can't get the woman at the SD to answer her phone. I leave messages

at her work number, she calls me and leaves a message for her cell

phone which at first was the WRONG number, now goes directly to voice

mail without even ringing. I can't understand WHY she wants me to

call her cell rather than her work. The boys have both been without

services since the end of Feb.

Took the boys to a DIFFERENT child autism nuero that was recommended

by an advocate group. I'm SO GLAD that we went, but am now more

confused than ever! He asked many in-depth questions, spent a great

deal of time with both boys, watched them interact, etc. Things that

NO other doctor did - including their pede and the other neuro. He

comes up with: NEITHER child may have autism - if you can believe

that!

He said the one with PDDNOS may be having seizures that could be why

his speech is scattered and/or why he doesn't retain things. He also

had tortecollis at birth that has never been treated and has affected

the shape of his head and his face. I was told this would get better

over time but it has gotten worse! He wants to do an MRI and EEG on

him.

The other child he said may not have autism either - that he could be

having seizure as well that is affecting his ability to form ANY

words and his extreme behaviors and delays could be due to not being

able to communicate. He noted that this child has learned that since

he can't communicate, why bother trying to interact with strangers;

they aren't going to understand him anyway? So he wants to EEG on

him as well as a new blood test using microchips to identify up to

3,000 genetic abnormalities. He said that if either child has

seizures, it affects their sleep patterns and REM sleep so that when

they get up in the morning they are not refreshed. Instead, they are

irritable, cranky and can't concentrate - thus mimicking autism

traits.

Thank God for insurance. But then, with all these tests, our

insurance could very likely drop both children because of

the " autism " label - I have Blue Cross.

This doctor actually wrote up a detailed letter for both children so

that I can give it to WHOMEVER I need to and get them the services

they need.

With all the paperwork I have for these various avenues, disability,

DAN, tests, court hearings, attorneys, FAX'ing....I am about to go

nuts drowning in paperwork. And that doesn't even count the time

spent on phone calls. I need a secretary!!!!

Has anyone else gone through all this red tape and different answers,

getting nowhere and going in cirlces? This is crazy. I'm starting

to think I'm the one that needs medication!!!!