kennedy krieger -- neuropsych testing

[smartyjones]

please info and thoughts about kennedy-krieger for neuropscyh testing.

 

this seems ridiculous to me b/c i think i am one of the out-spoken voices about JHU being troublesome for pandas -- due to personal experience in the beginning, not so much troublesome, but just not helpful. i am not looking for help for pandas treatment, but for neuropsych testing to tease out if there are neuro issues that affect ds -- specifically with handwriting and communication.

 

i have long railed against the 'long-arm of JHU' as i've dramatically put it b/c we are geographically close. however, we had a ridiculously stupid consult last week with a highly recommended D.eD fo rthe testing that was horrible. it was as if i had written a paper on how to have ds be non-responsive in an appointment and he followed it to the t and then decided ds likely has a 'behavioral issue'. really?! why the *&*& do you think i am sitting in this office? of course he does, we're trying to decipher WHY? complete with his first questions to my school phobic 2nd grader who is currently out of school being what grade he's in, who his teacher is and what the name of his school is. I myself have trouble answering those questions briefly. (i have no problem with him asking those to see the reaction, but as rapport building and then wondering why he doesn't trust him is my issue)

 

i have a history of migraines with aura and i know what it's like when your brain is not working the way you want it to or it normally does. i am looking for someone who can do the testing to determine if ds experiences something similar and won't just take the easy cop-out of 'he's not doing what is required of him'. seriously? -- 'willful non-compliance' in 2011 with a medical diagnosis??!!

 

it's looking like kennedy krieger could help but i am very leery of the assoication with JHU. anyone have thoughts? thanks.

[dcmom]

smarty-

 

Have you tried contacting Dr Susan J Perlmutter in VA? She is a neuropsych- maybe she does the testing, or could refer you. She worked with Swedo.

[bigmighty]

I have heard very good things about Dr. Lisi Levishon at Weinfeld Group - http://www.weinfeldeducationgroup.com/weg-staff.html. I was given the impression that the cost would be over $1k for testing and that it was not covered by most insurance, though.

[mdmom]

I live in the Baltimore area and have had multiple interactions with KKI docs. My son even attended the KK school for 2 years and his PANDAS was missed by all. KK folks are very good at identifying behaviors and working with them. I think they are quite narrow-minded in this area and refuse to look at why behaviors are happening and instead focus on dealing with behaviors. My son had neuropsych testing done by a KK doc - she would grab him from the classroom and take him to her office (at that time the neuropsych offices were in the same building as the school). He spent most of the time "freaking out," during the testing that her evaluation wasn't very complete or accurate, in my opinion. His IQ came back 30 points lower than previous testing only 2 years prior.

 

Without further rambling on....I can simply say that I would not recommend KKI for testing.

[tpotter]

please info and thoughts about kennedy-krieger for neuropscyh testing.

 

this seems ridiculous to me b/c i think i am one of the out-spoken voices about JHU being troublesome for pandas -- due to personal experience in the beginning, not so much troublesome, but just not helpful. i am not looking for help for pandas treatment, but for neuropsych testing to tease out if there are neuro issues that affect ds -- specifically with handwriting and communication.

 

i have long railed against the 'long-arm of JHU' as i've dramatically put it b/c we are geographically close. however, we had a ridiculously stupid consult last week with a highly recommended D.eD fo rthe testing that was horrible. it was as if i had written a paper on how to have ds be non-responsive in an appointment and he followed it to the t and then decided ds likely has a 'behavioral issue'. really?! why the *&*& do you think i am sitting in this office? of course he does, we're trying to decipher WHY? complete with his first questions to my school phobic 2nd grader who is currently out of school being what grade he's in, who his teacher is and what the name of his school is. I myself have trouble answering those questions briefly. (i have no problem with him asking those to see the reaction, but as rapport building and then wondering why he doesn't trust him is my issue)

 

i have a history of migraines with aura and i know what it's like when your brain is not working the way you want it to or it normally does. i am looking for someone who can do the testing to determine if ds experiences something similar and won't just take the easy cop-out of 'he's not doing what is required of him'. seriously? -- 'willful non-compliance' in 2011 with a medical diagnosis??!!

 

it's looking like kennedy krieger could help but i am very leery of the assoication with JHU. anyone have thoughts? thanks.

 

If you are willing to go to either PA or NYC, I know of neuorpychs in both places who I was quite happy with. PM me if you want the names, and contact information (NYC was at Columbia Presby), and PA is near Philly, and is in private practice. PA guy knows at least a bit about PANDAS, because of me. I highly suspect the one in NYC would "get it", too, although she evaluated DS before we knew he had PANDAS (but she hit the nail on the head about his academic issues.)

[thenmama]

We were on a waiting list for a neuropsych eval at KK-- which was arranged for us by a doc who runs a center that's in a partnership w/ KK. She had spoken to someone about our son when the KK docs were at her center for a meeting and they initiated it for us. We did the initial phone call, paperwork, etc. We were on the list to be contacted "soon" by the team to schedule our appointment... months and months went by and we heard nothing. I did call and check in a few times and we were supposedly still on the list. We ended up getting some of the info we were looking for from an eval ds was had for something else, and our other reasons for seeking the eval at KK became irrelevant, so we moved on and forgot all about it. Then, out of the blue after well over a year-- I think almost two, can't remember exactly now--we got a form from them in the mail asking us to fill it out and send it back if we still wanted to maintain our place on the waiting list for an appointment-- I was shocked. I can't imagine how I'd have felt if I'd really needed that appointment!

 

TH