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Do you also use a neurologist?


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With the most recent issue of re-reading (rechecking ocd) and the stutter while reading aloud (stopped after IVIG), our immunologist got very nervous and wanted a neurology consult to rule out more serious stuff. I am not too worried, now that I see it goes away with infusion, but I made an appointment so I am following the wishes of our doc. My question is:

 

Has your neurologist (if supportive of the PANDAS dx) offered anything in terms of imaging (MRI) or other diagnostics? He had EEG when all this started which was of course normal. Any meds they tend to push?

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We did see a neurologist early on. She didn't know much about PANDAS but did agree that our dd had PANDAS. She said my dd was only 1 of 2 kids (Diana P.'s son was the other one) who she really considered to be PANDAS over the past many years(I don't know how many possible PANDAS kids have seen her or how many actually had PANDAS). She didn't do too much for us, but did agree given the circumstances (anorexia) that it made sense to keep our dd on prophylactic abs (this made our ped feel better, since the ped was nervous about the abs). When we finally did decide to do an MRI (which was normal), we did put in the order through her.

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We've seen two neurologists. The first one told me if I'd just be more consistent and firm in my parenting, my DS would not be acting the way he was. I went there before I knew about PANDAS, thinking he might have a brain tumor as his behaviors like raging, etc... came on so suddenly. All she did was a neurological screen in the office.

 

The second one I saw after PANDAS diagnosis, after ticcing started, while waiting on Cunningham test results. She was very interested in Cunninghams work and the test results. She also did a neurological screen. No meds offered or suggested. I sent the Cunningham results when it came in. I've heard nothing, my son is doing well on abx and we haven't been back. This neurologist told me the practice has seen some PANDAS kids and she cracked opened the door to possible IVIG by telling me she's been talked into IVIG by some parents for things that shouldn't have needed IVIG but they got results.

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With the most recent issue of re-reading (rechecking ocd) and the stutter while reading aloud (stopped after IVIG), our immunologist got very nervous and wanted a neurology consult to rule out more serious stuff. I am not too worried, now that I see it goes away with infusion, but I made an appointment so I am following the wishes of our doc. My question is:

 

Has your neurologist (if supportive of the PANDAS dx) offered anything in terms of imaging (MRI) or other diagnostics? He had EEG when all this started which was of course normal. Any meds they tend to push?

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We see a neurologist because our pediatrician who gave us the PANDAS dx wanted to rule out anything else when we suddenly started with a tic (previously there were none).

 

To quote my husband - our neuorologist has done little for our case other than collect our $$$. He's a PANDAS skeptic - but did agree that is likely what our son has. We go every 6 months now for routine follow ups - but not quite sure why.

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