simplyshine Posted May 1, 2014 Report Share Posted May 1, 2014 We are still working on getting a diagnosis for our son. The entire month of April was a flare-fest for him, and we reluctantly are trying Concerta to see if his time in school is more productive (teacher says he's "out to lunch" all day). 18 mgs did nothing and his teacher told me today that he hasn't seen any changes with the 36 mgs either. Is this possible proof that it's not ADHD and that something else is going on? He's been on the meds for two weeks. Also, his doctor finally agreed to do some blood work for us. We aren't exactly sure what to have tested and since I'm not that medically-literate, I wondered if someone could just make me a list of things to ask for. I was thinking that testing the titers and some nutritional deficiencies would be good, but what specifically? Thank you so, so much! Also, we have an appointment at the Children's Hospital of Denver with a neurology doc. I also have a referral to the infection diseases department. If we need to pick one or the other (for financial reasons right now), which should we choose? I got the neurologist off of a PANDAS provider list, but I'm unsure of the extent of his knowledge on the subject. Link to comment Share on other sites More sharing options...
pr40 Posted May 1, 2014 Report Share Posted May 1, 2014 for blood work, please pinned materials. also, you can do search, I think I remember someone posting one recently in a response to a question similar to yours. choice of drs. -- do research on both. the fact that you got the name of PANDAS list, speaks in favor of the neurologist. those lists are not accurate but you can call and ask, how he treats PANDAS. it is not enough for a dr to believe in it.she has also to be willing to treat it with long term abx, ivig etc. good luck Link to comment Share on other sites More sharing options...
Hrosenkrantz Posted May 1, 2014 Report Share Posted May 1, 2014 On the adhd meds, i have been told by pandas specialist that pandas kids don't do well with traditional ADHD meds -- something about dopamine levels. I know adderall was not good for our son. Link to comment Share on other sites More sharing options...
LNN Posted May 1, 2014 Report Share Posted May 1, 2014 In Pandas kids, the ADHD issues sometimes have to do with elevated CaM Kinase II enzymes in the basal ganglia. CaM KII plays a big role in memory formation and attention/recall. It's not the same issue that kids with traditional ADHD have with the frontal cortex and need for stimulation. The Pandas Primer may be helpful regarding your other questions on lab tests http://latitudes.org/store/should-you-consider-pandas-ebook/ Link to comment Share on other sites More sharing options...
4Nikki Posted May 1, 2014 Report Share Posted May 1, 2014 DD's Neuorlogist tried to go the ADHD stimulant route when we discovered the the ibpruphen with a little stimulate worked for DD, but the ADHD only medication did not work. we still don't know why. Link to comment Share on other sites More sharing options...
ibcdbwc Posted May 2, 2014 Report Share Posted May 2, 2014 In very simplistic terms, and very generally speaking, dopamine is lower in kids with ADHD and higher in kids with anxiety/OCD/PANS. But the behaviors look the same. Hyperactivity, attention issues. Link to comment Share on other sites More sharing options...
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