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Well, we met with the local pedi neurologist, and I was disappointed -- and then pissed and worried. First, he hadn't heard of Dr. Thienemann, one of the authors of the PANS consensus committee, and a founder of the Packard (Stanford) PANS/PANDAS clinic. (She gave the PANS dx). And this neurologist did even fewer of the basic neurological tests that ds16's pediatrician did years ago. And based on that he concluded that: there was no peripheral neuropathy (duh) no problem with his thalamic neurological system (whatever that is), and no generalized pain syndrome, and thus no reason for his sensory hypersensitivities DS16's problems "originate in the upper cortex", in other words, "that this is an anxiety-driven issue, possibly OCD-type thinking", and "best treated by his psychiatrist". He knew that we'd come with a diagnosis of PANS, still, when I asked for more of an explanation, this neurologist simply looked at me and answered: "I just did". Really? This from an MD? He didn't even look for choreiform movements; and he made no mention of the basal ganglia, the sensory motor loop that Dr. Thienemann had explained to us. I'd find it funny, except that he said to folow up with the psychiatrist, and that he'll "put a note to that effect in ds16's electronic record," Though I had been told by another MD not to expect much from this neurologist I am concerned that this dx will ruin my son's (and my) credibility. We've already done CBT for a few months with NO success, (unlike other times he couldn't figure out why he's so anxious, and can't be talked out of the sensory hypersensitivities he has). And anti-anxiety meds hadn't done anything. That's what we'd found years ago with my older PANDAS son, and what made us start looking at PANS for this kid. So, what would you do with this? And what should I expect from a good neurological examination anyway? -
Hello- just reposting. We are trying to get with Dr. L - but given her schedule - do you know of any other neurologist in the East Coast? Happy to travel, if needed. We are trying to get to an IVIG prescription - think its time! Anyone have any good suggestions. Thank you for your help.
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Receptionist just called. Being moved to another dr. NOT Dr. N.
Guest posted a topic in PANS / PANDAS (Lyme included)
We were supposed to leave Florida monday and see Dr. N tuesday but the receptionist just called and said we have to see a "Dr. Derek Chong". He has good ratings online and 3 very good reviews, but I don't know anything about him. Any advice would be welcome. My mom can't reschedule everything, she works full time as R.N. in busy hospital. WE have rented a loft as well. Can't say I'm not disappointed. He is board certified in neurology, psychiatry, and sleep medicine, which is GOOD. Can anyone give any advice in dealing with this situation? One time I was supposed to see a top M.E./CFS specialist in Miami and we ended up seeing her partner and it was a hellish experience. The "partner" doctor didn't have much knowledge, bad bedside manner, spent thousands of dollars and couldn't help me at all!!!!!!!!!! This happened to one of my best friends b/c we went down there at the same time, and this "partner's" treatment actually made my friend permanently worse so this is the concern we are having. Is it safe to see a partner? My experience when this happened was terrible. What I do like about this situation is: "1. He always returns calls/Emails promptly 2. he answers all my concerns/questions and never makes me feel "crazy" no matter how crazy they are 3. He fits me into his schedule if I need to be seen immediately 4 . He never makes me feel rushed in an appointment and will spend however much time is needed to answer all my questions 5. he asks a lot of questions and is very thorough in examining 6. http://www.vitals.com/doctors/Dr_Derek_Chong/reviews#ixzz2klDz5dn7" Also the day and time was rescheduled from afternoon which is better for me to VERY early in the morning (major sleep disorders). Thanks.