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Seeing Dr. K in Chicago on Monday


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Has anyone else here seen him? I'd love to hear impressions, what he might ask/order/prescribe.

 

Also, in general, what should I bring or ask? I have the results of the strep blood tests my son had done last week, as well as some other tests he's had done over the years (Organic Acid Test, fructose malabsorption test). I will write down the supplements he's taking now. And I also wrote up a timeline of behaviors to try to make sense of everything.

 

Anything else?

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Thanks. I did e-mail him a timeline for my son before we made the appointment, and he responded saying it was very likely he had PANDAS. I replied to THAT e-mail again saying we'd be seeing him on Monday. So hopefully he'll actually read through it more carefully.

 

Also...I'm reading mixed reviews on him, personality-wise. Just that he's knows his stuff but can be impatient with parents or downright rude. What did you think of him? He's possibly our only shot at treatment for our son if he does indeed have PANDAS, so we'll see him either way. I just want to be prepared.

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Yes, he does know his stuff and he can be down right rude. I have also called him on it. He did not hold that against me. :P Overall, I have been very happy with him. I think what happens with him is that as a researcher he has a bigger picture of Pandas that we do not plus the fact that he is not the parent so the emotional side is a bit lost on him.....

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Just got back from taking Henry to see Dr. Kovacevic. Almost four hours in the car total...I'm exhausted & I didn't even drive.

Dr. K is a really different kind of doctor -- really messed with the kids, called the boys girls, called them "Mary Lou," asked random questions & circled back to questions he'd already asked. He pretty much ignored me & DH while he talked to Henry. I guess he was trying to provoke a response from him by saying nonsensical things. Then he booted both boys out of the room (the receptionist watched them) to talk to us.

He said that Henry is not normal. He has Asperger-like traits. Barely looked at him & when he did, he looked through him & not at him. Has almost a mask over his face when he talks, like a puppet. And interacting with him is not like interacting with a nine-year old, but with a five-year old.

I knew all this, but it was still very blunt. Of all the doctors we've seen no one has really LOOKED at Henry; no one has mentioned Asperger's, even though I've long suspected it. I tell people that Henry is still very innocent, like a little kid.

 

The mask/puppet thing -- IDK. Maybe I'm just too close to Henry? I mean, he interacts with people. He gets along with other kids at school, including having a good friend. I think that's just when he's uncomfortable or with someone he doesn't know. He didn't like Dr. K -- he doesn't like it when he doesn't know what's going on.

So...to find out if he has PANDAS or "just" Asperger traits or something else, he wants Henry to do 14 days of Augmentin, maybe some steroids after that, & report any changes we see.

He said if it is PANDAS, & it's treated, Henry's Asperger-like traits would go away. Freaky.

He thinks IVIG is the best treatment though, so if he decides it IS PANDAS we will have a lot to think about.

Edited by QueLinda
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