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1st dr. appt after initial diagnosis

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Hello all! So Isaiah has his first doctors appt coming up in about a week and a half. This will be the first time we've seen the dr. since the initial diagnosis a couple of weeks ago. Is there anything we should expect or ask for? Our ped. is brand new to this and has asked for me to bring in information that I have found regarding PANDAS, so that makes me a bit nervous, however I am happy he is willing to work with us and treat Isaiah. But since both he and I are new to this, I thought I may turn to you experts to see if there were things I need to be asking for (certain blood tests, referrals to specialist, family testing for carriers, long term abx, ect.). As of tomorrow Isaiah will have been on his abx for 2 weeks, and is doing very well! Our ped did call in a new prescription for us to continue while we are on vacation (we leave in the morning for 9 days) so that Isaiah can "hopefully" enjoy himself. Some of his biggest anxieties have been airplanes and 'carnival' rides, we are flying to southern California (from Washington state) and visiting theme parks including Disneyland,so that makes ME nervous, however he is doing well this week and does not seem as nervous, the abx have helped with many of his symptoms thankfully! Although today his symptoms were more noticable, which I am sure has to do with the trip. If anyone can offer me and advice/insight I would greatly appreciate it! I will hopefully have wireless at our hotel to check and respond this weekend/week! Thank you all again for welcoming me into this group, I don't know where I'd be without it and all of you!! :)


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  • 2 weeks later...

Sorry, I dont have any advice to share as we are waiting on our first appt after our son's diagnosis. What I have decided to do though is go well prepared. I had put into a binder every record I have on him, medical, school, etc. And I have complied a timeline with behaviors noted since there began to be issues 5 years ago. This is a quicky summary for the doctor to review, with supporting documentation in the binder. We are going well prepared with the numbing cream as I expect there will be blood draws.

Make sure you sign releases right there to get a copy of the records for yourself. I have found that it is very helpful to keep your own records.

Also make sure you go with any questions that you have, most important first. Take notes, becuase there is no way to remember everything that is said and you will want to refer back to it and share it with your regular doc.

I hope someone who has already gone through the first appt will give you more information.


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Anyone?? His appt. is tomorrow (Tues) and I am hoping to go "somewhat" ready as far as what to ask for/expect. If anyone has any advice I would greatly appreciate it. Thank you!



sorry - did not notice this post last week. If you are looking for an article to bring, I think the most current review is http://www.partnerstx.org/Resources/TS/ImmunobiologyofTDandPANDAS.pdf - which is good because it is written by doctors who have been advocates for PANDAS and a doctor who has been a critic of PANDAS - so it is probably less biased than some other works. Another very good article for explaining PANDAS (though a bit older) is http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2413218/pdf/1745-0179-4-13.pdf


Glad to hear you have ABX for vacation!! Enjoy! Let us know how vacation and the doctor visit go!

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