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Discontinuing service with dr


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Question: Did you have to "discontinue service"* with your pediatrician prior to getting your PANDAS dx thru an expert? If so, how did you then find a dr who would touch you with a 10-foot pole? Did you just settle for a 9-foot pole? Do any of you have tips/tricks/advice on this slippery slope?

 

I'm all for the get-rid-of-them attitude if they hinder and interviewing them beforehand...how much do you reveal tho'. I want someone who believes in PANDAS & who will follow post-IVIG protocol from Dr. K & provide routine care & be ds's regular dr. I don't think my wishlist is too long. That means I'm being open & honest when talking to their office vs. showing up as a new patient with a big SURPRISE. Today, I literally got told by a pediatrician's office to call an immunologist's office who then told me to call a neurologist's office. Ya know those latter will have crazy long waits...and these people knew I already had the dx & IVIG scheduled for next month. And even if I saw an immuno or neuro, I still need a pediatrician. Discontinued service with my own family doctor yesterday (was looking for band-aid fix until I find regular dr & see if I could get steroid burst thru him with ok from expert)...person who answered phone took info vs. letting me talk to nurse & then called back & told me it wasn't my dr's expertise (ROTFLMAO!) and to call a pediatrician (now why didn't I think of that...duh! :wacko: ). I refuse to go back to the dr that acted like I was crazy to even mention PANDAS twice just so she could tell me NO twice...apparently their practice has PANDAS patients/twins who present with an eye tic/twitch when they get strep that goes away completely within 24-hours of an abx. Not judging that because someone's lightest day is someone else's darkest & maybe there's more to it but...HUH? My 2nd opinion dr also treated PANDAS patients...glad I went to a 3rd opinion/expert! If our ENT dumps me at our Fri appt, then I am up a creek without a paddle. I really like our ENT & go to him myself...crossing fingers even tho' the nurses haven't called me back for 3 days now. Hello Rock & Hello Hard Place...let me squeeze/lodge/wedge myself in between ya two.

 

* I tried using the euphamism "technical difficulties" to explain what happened with our pediatrician, but it didn't work. I sometimes think I'm the only one that gets my jokes.

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You're new here, but I already like you a whole lot. Hahaha. Your posts always make me laugh. :)

 

Where do you live?! Surely there's SOMEONE on here he knows of a doctor in the area. There's a list of doctors by state on here somewhere, but it's pretty disorganized & is rarely added to since it's not pinned.

I don't know if there's a specific title needed for IVIG help, but I'd just call every pediatrician/neurologist/immunologist/whateverelseologist going "P.A.N.D.A.S.? P.A.N.D.A.S.? P.A.N.D.A.S.?" (kinda like the seagulls from Finding Nemo? :) ) until one responds with something other then "Yes, the cute cuddly bears?". Persistence is key. Don't give up!

Anyone who knows their P.A.N.D.A.S. ABC's would be happy to help you with a doctor like Dr. K backing you up. :D <3

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See if there is any biomed or special needs support group around your area.

The special needs moms always know the most awesome doctors who are used to thinking outside the box

and have good communication skills.

 

We found an awesome ped in NJ who oversees our PANDAS protocol and talks to specialists we see.

We love him.

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See if there is any biomed or special needs support group around your area.

The special needs moms always know the most awesome doctors who are used to thinking outside the box

and have good communication skills.

 

We found an awesome ped in NJ who oversees our PANDAS protocol and talks to specialists we see.

We love him.

hi may I ask where in NJ is this pediatrician?

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Well.. I am hoping that your ENT pulls through and keeps the appointment. If he/she does, then I would take that opportunity to ask them for a pediatrician who thinks outside of the box. The specialty docs work with ALL the pediatricians in town, so they know who is really good and who is not so good!

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EmersonAilidh...you are pretty cool yourself! B) Courageous too! And hey...persistence got my ds the dx. Everybody gets knocked down...how quick are you gonna get up? (Love that song!) And the problem is that the PANDAS ABC's are more like the ZYX's...they want that square peg in the round hole for dx and if it doesn't fit exactly as stated in paragraph 3 then NO PANDAS FOR YOU!!! To be fair, not all but some...I guess.

 

When I got the immunologist/rheumatologist/allergist (yes, all 3 in 1 dr) referral from the pediatrician's office I'd called (who didn't even try to woo me)...I thought he might be kind of excited to get a PANDAS case. And I thought maybe I could get him to start doing IVIG locally. Sure it might not benefit me now but for the good of others that follow behind me. (I'm a dreamer...still not a hugger tho'.) Then the nurse called back aout 2 hours later & said he thought I should call a neurologist & gave me 2 names...not even the numbers. Grrrrr. I even already have copies of Saving Sammy to give to drs...maybe I should say "but wait...act now and you'll also receive this free book" at the end of my narrative. (I used to be in marketing...maybe I should do a flashy PowerPoint. Singing telegram in a PANDA costume? It's late & I've had little sleep due to ds's insomnia during exacerbation & it's showing.)

 

I am planning to ask the ENT for names but am not sure if they give referrals or are used being the recipient of a referral. (I am pretty sure my appt will be a go...am just p-a-r-a-n-o-i-d.) GOOD idea on the special needs group too...definitely can check that out and ask a few friends. I don't think there are any DAN drs, but I can check the university (tho' it was their peds unit I called today that played "pass the patient" with me). I've asked FB friends and have had a few suggestions/warnings that cancelled out each other...that was kinda funny. Plus, people don't understand this, so I think they're hesitant to get involved, OR the way the FB News Feed is now I'm lost between Mafia Wars and quiz results. <sigh>

 

That's why I love this group. I know I'm a big taker right now because I'm new...but I plan to help those who come behind me. (See above...I already was trying to build a state-of-the-art IVIG center!) I'd like to see at least one or two PANDAS-friendly doctors in each state/major city...maybe not for treatment yet (eventually that) but for support & follow up at least. Since we're such a "rare" disorder, that should be doable, right? Right? <Hello...hello...is this thing on?>

 

P.S. I'm in central KY. (GO CATS!)

 

P.P.S. whateverelseologist...wish I'd thought of that :) And I'm so entrenched to think of PANDAS as the enemy that I had to reread the "yes, the cute cuddly bears" thing a few times before I finally got it. Geez.

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You're right, there aren't many DAN's (if any) in our neck of the woods. I once called the only one listed in my area and it wasn't the best conversation. For those that are Dr K's patients, he is the one who provides the antibiotics scripts post IVIG, correct? If a steroid burst is needed post IVIG, does he write the script or do you need to have a local doctor write the recommended script? My point is how much does your local doc need to do for you post IVIG?

 

When I call peds offices, I ask them about their PANDAS knowledge, but ultimately you don't learn everything about them until you meet them in person or you actually need something. However...for initial appts, you do not need to transfer all records so you can meet them first before going through all of that.

Edited by Vickie
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Sorry you're going through this. One thing to keep in mind as you're looking for a pediatrician: just because he hasn't heard of PANDAS or treated anyone with it might not rule him out as a candidate. Just as important as his experience with it (especially if you're alrady working with Dr. K) is whether or not he's open to following the specialists protocols when needed, and if he's willing to be open and to LEARN what he needs to about PANDAS to help your child and others that follow.

 

Our pediatrician had heard of PANDAS, and treated a few kids before he dx our son. However, what I love most about him is not that he was on the ball with the dx (although that's pretty kick ###### too...) is that he is always asking me at every appointment what else I've read, or learned, or seen or heard. We're now also seeing Dr. Murphy at USF (she's local for us) and even though he gets a report from her office after every appointment, he still wants to hear from me what else she said, her thoughts, planned direction, new issues/research.

 

While it sucks to have your kid be the guinea pig for a PANDAS illiterate dr. All doctors have to start somewhere - and I think being open minded about the dx is just as important as their experience with it.

 

Just my two cents - won't buy you much these days, but do what you want with it! ;)

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Vickie - I was told to get steroids here. He will fax order for pre-IVIG blood test tho'. I don't know about after-care abx...am assuming he may give us a 'script for up there, but that I'd need a local one too. I do need just a regular dr for ds no matter if Dr. K does the meds.

 

Arial95 - I was actually thinking about it today & should add to my wishlist that the dr be willing to learn & work with me. There's gotta be someone who would be interested in the case. They'd be working with Dr. K at first (& as we have to consult)...can learn from one of the best. You probably already know this, but you're lucky to have a dr that involved. Wow.

 

Thanks everyone!

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Got the meds from ENT & with start with an a.m. dose in the morning. Appt was okay...ds threw a rage/tantrum over not getting to see me get my allergy shot. Running late & I ran in while ds & dh parked the car...didn't even occur to me to wait for ds tho' I know he loves to see me get the shots. Even asks them to give me more when I already get 2! <_< ) AND I talked to a pediatrician who knew what PANDAS was but didn't have any patients but it was a good talk & we have an appt on Mon.

 

So...some good things happened today. And ds had a good day other than the rage/tantrum at the least opportune time, which is when they usually happen. Tho' I think it at least let them see what PANDAS can do. DS has always been well-behaved at that office.

 

Thanks everyone! Keep on truckin'!

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