Newbie - need advice on starting testing, protocols,etc for ASD son

[Guest guest]

Hello,

We're newbies to the group and had some questions for how to proceed with

some testing for our son.

He's 9 and has been diagnosed with ASD; he got the diagnosis when he was 2-3 yrs

olds. A neurological BEEM test also showed a variant of LKS.

He also has apraxia, his receptive language skills are good but his expressive

language skills are limited to a very few whispered words.

He also has a history of regressions in behaviors and various skill levels.

Example would be previously toilet trained but has regressed to not using the

potty and having frequent accidents.

He has also become much more anxious since July 2009. Since then he's been

exhibiting more intense OCD behaviors as well as various aggressive outbursts.

His appetite fluctuates; he's on prevacid, which appears to have helped him

somewhat.

He's currently on Trileptil (sp?), which appears to be causing him to have

extreme mood swings.

He also undergoes IVIG therapy 2x per week, every 3 weeks.

Questions specifically on the Testing and Protocol:

1) What's the best place to start

2) What test should be/might be run, given his current conditions

3) Do the tests need to be run at a specific doctor's office or can they be run

at a local facility

(office,lab,etc)

4) Are there specialist practitioners in the New England or New York

areas.

We reside in RI

Any advice would be greatly appreciated.

Thank you

Bill

[Guest guest]

Hi Bill,

I'm fairly new here too, so I'm not a font of information, but I do know that

there is a doc in New York. I've heard they are good. I hope the info below

is up to date:

NNY Autism Center

103 South Main Street

Black River, New York 13612

Phone: (315) 773-5405

Fax: (315) 773-5378

E-Mail: autismclinic2@...

Your son sounds A LOT like our 7-year-old. Especially in language strengths and

deficits, and the more recent appearance of anxiety and OCD. We thought autism

was challenging...the OCD is really kicking our butts! We are in California now

for our first appt. with Dr. Goldberg. We live in Michigan.

We did some of the protocol testing prior to our trip. Our current DAN doc was

helpful and ordered them for us (our non-responder son has been a puzzler for

him as well, so why not try out this theory). It was helpful to see that his

immune panel and viral titers seem to be in line with what you would see with

immune dysfunction. It's nice to see some evidence that we are on the right

track, and all this effort may well be worthwhile!

Good luck!

Tammy

Newbie - need advice on starting testing, protocols,etc for ASD

son

Hello,

We're newbies to the group and had some questions for how to proceed with

some testing for our son.

He's 9 and has been diagnosed with ASD; he got the diagnosis when he was 2-3 yrs

olds. A neurological BEEM test also showed a variant of LKS.

He also has apraxia, his receptive language skills are good but his expressive

language skills are limited to a very few whispered words.

He also has a history of regressions in behaviors and various skill levels.

Example would be previously toilet trained but has regressed to not using the

potty and having frequent accidents.

He has also become much more anxious since July 2009. Since then he's been

exhibiting more intense OCD behaviors as well as various aggressive outbursts.

His appetite fluctuates; he's on prevacid, which appears to have helped him

somewhat.

He's currently on Trileptil (sp?), which appears to be causing him to have

extreme mood swings.

He also undergoes IVIG therapy 2x per week, every 3 weeks.

Questions specifically on the Testing and Protocol:

1) What's the best place to start

2) What test should be/might be run, given his current conditions

3) Do the tests need to be run at a specific doctor's office or can they be run

at a local facility

(office,lab,etc)

4) Are there specialist practitioners in the New England or New York areas.

We reside in RI

Any advice would be greatly appreciated.

Thank you

Bill