First appointment with the neurologist tomorrow

[airial95]

Just got a call from the neurologists office, they can bump up our late August appointment to tomorrow afternoon. Our pediatrican has already warned us of nurologists disdain for the PANDAS diagnosis in general, so I'm somewhat prepared for that. But just thought I'd put a quick shout out to see if anyone has any words of wisdom or suggestions as to what I might expect tomorrow.

 

(Just a note - we've been dx with PANDAS since January, been on abx since then, had the dx confirmed by Dr. Murphy last week. Up until about 3 weeks ago, he didn't have any tics - all of his symptoms were OCD/behavioral. He started with a face tic a couple of weeks ago - which is why the ped is now referring us to a neuro.)

[thereishope]

I would suggest having another adult go with you. Having a second set of ears is helpful and they will be there to help defend your situation, if needed. Also, call the neurologist office and ask if they can email you the paperwork ahead of time. Neurologist questionnaires can be long and your son may get antsy when you're filling them out.

 

I'd probably print out the PANDAS fact sheet and FAQ and rebrief myself on it. That way if you need to make a rebuttal, the info is more fresh in your mind.

[airial95]

Thanks for the advice, I was going to go alone but after your post, I insisted that my hubby go along.

 

It actually went better than I thought. When we first started discussing why we were there, and that he was being treated for PANDAS - and the dx was confirmed by Muephy, he sort of got a smug, "here we go " look on his face. It didn't last long, however, because I just continued right on without letting him interrupt as to why we are treating the way we are (including the admission that if abx have any chance of working I'd much rather try that first than the alternative on my 2 year old.). When I pulled out what we now affectionately call my "crazy mom binder" tracking symptoms over the last 6 months -and correlating known strep infections at school that I think he realized I had done some homework.

 

He didn't completely dismiss the dx-which surprised me. He said the reason they're connecting pandas was the sudden onset -duh. But he asked if we've gotten titers run, and if we could share the results when we do. (that's somewhat promising I think). He also described that tics are associated with OCD and all the other neurologist crap. The good news is that he didn't think medicating was necessary for his tics, but he is going to run an EEG next week to make sure there are no seizures causing the tics, since they just started a couple of weeks ago(which is exactly why our ped sent us there).

 

So overall, while it wasn't a great a ppt, i had prepared myself for much worse.

[kimballot]

Thanks for the advice, I was going to go alone but after your post, I insisted that my hubby go along.

 

It actually went better than I thought. When we first started discussing why we were there, and that he was being treated for PANDAS - and the dx was confirmed by Muephy, he sort of got a smug, "here we go " look on his face. It didn't last long, however, because I just continued right on without letting him interrupt as to why we are treating the way we are (including the admission that if abx have any chance of working I'd much rather try that first than the alternative on my 2 year old.). When I pulled out what we now affectionately call my "crazy mom binder" tracking symptoms over the last 6 months -and correlating known strep infections at school that I think he realized I had done some homework.

 

He didn't completely dismiss the dx-which surprised me. He said the reason they're connecting pandas was the sudden onset -duh. But he asked if we've gotten titers run, and if we could share the results when we do. (that's somewhat promising I think). He also described that tics are associated with OCD and all the other neurologist crap. The good news is that he didn't think medicating was necessary for his tics, but he is going to run an EEG next week to make sure there are no seizures causing the tics, since they just started a couple of weeks ago(which is exactly why our ped sent us there).

 

So overall, while it wasn't a great a ppt, i had prepared myself for much worse.

 

Arial - Kudos to you! You must be a very confident and articulate Mom! Keep your tracking and journaling up so that you continue to have that crazy Mom Binder (I now carry a large expandable file with all doctor notes, and my laptop with my behavior and med chart and PDFs of lab work and such... after 13 years I had to consolidate). Your 2-year-old is SO lucky to have you for a Mommy!

 

Keep us posted on your progress with this neurologist. You may be the person that "turns the tide" for that doc!

[mkur]

I have 3 crazy mom binders. Love it.

[airial95]

I have 3 crazy mom binders. Love it.

 

I'm about to expand to a second one. I honestly think that my "crazy mom binder" has helped me get my son's needs met with far less opposition than I would've expected!! I don't know if it's because they're afraid of it (or me ), or they see the value in what it shows...either way, it works!!