Tom's DAN! Appointment

[RathyKay]

If you're curious, I posted it over Child Neuro (http://brain.hastypastry.net/forums/showthread.php?t=138). It's VERY long. Sorry. Some things I didn't mention there, which you might be interested in: the DAN! doctor hadn't heard of DQ1 (gluten sensitivity) genes and thought they were interesting. I'm not sure if he had heard of EnteroLab, either. However, autism treatment is big on GFCF - they don't worry about celiac disease, so he was happy Tom is already GFDF. It really was nice to talk with a doctor who is a "believer," if you know what I mean. That's probably enough rambling for tonight.

[OZZ]

Hi, I am on my way to work, but just wanted you to know I linked you to my daughter who is teaching autistic children at the Cleveland Clinic.

I think the method they use is ABA...I think...my brain is not fully functional as some might have noticed. ;)

They do not discuss diet.:(

[jcc]

Sounds very much like my first appointment :). I was a tiny bit disappointed in that I wasn't sure my DAN! doc had fully read the history, as he seemed to be doing a fair amount of reading on the spot. But, it was a long appointment, and he listened, and was not only on the same page, but light years ahead of me which was a refreshing thing!

The testing did add up. For us, because it was obviously out of network, I had to meet a $500 deductible, and then I think it paid 70%. I actually thought that was pretty decent coverage...considering. We managed to get some of the lab work covered at regular rates by going to our regular hospital, and our regular docs name got put on the copies, and I think it got through that way. I think now our insurance is down to 50-60% for out of network. I do not regret doing the testing we did. We found some interesting things in her immunological profile, and a lot did fit with the same types of things they see in the autism spectrum (like high copper/low zinc). We never got to the later testing, because my daughter turned 18...and I also wasn't feeling good on spending the $$ because my daughter was concompliant with recommendations. So... we only got so far.

This doctor really knew his biochemistry. And it was such a relief to be talking to a doctor who 'got it'. It was very interesting to sit and go over all the lab work, stool tests, etc.

The cost was tough...but I think I tried to think of it in terms of other living expenses :rolleyes:. We put out $1000-2000 for car repairs or to fix our air conditioning or replace our carpet, etc, because we view it is a necessity~ so certainly it is worth the cost of fixing our kids.

I enjoyed reading your report. Thanks for filling us in.

Cara

[annelb]

Great appointment! How wonderful to have a doctor who will listen. I especially like that he asked you what were the five most important things to address. I am a nurse in a clinic and when a new person is referred I always ask what problems they want addressed. I am surprised how many times what the patient wants from the visit is different than what has been written in the referring doctor's letter. OK, maybe I shouldn't be so surprised ;)

I hope the test results give you the information that will help your son more.

Thanks for sharing - keep us posted.
Anne