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phone consult w. Dr. K


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Well, I did my proper channels in the system - went to family doc (previous post), and through ped - ped feels it is chorea, which he tells us is time limited and will go away. He did not have an answer why we had such an explosion of symptoms following the fever/virus from March - except to say "maybe you are giving her too much attention when she is misbehaving and that is why she is doing it" & "if this is not time limited as chorea should be, then prepare yourself for a behavioral diagnosis".

 

I am so glad I found this forum before we went so I was mentally prepared for this reaction - even with that, I find myself questioning if I do add to the "problem". We have worked overtime to remain neutral with her and so hard to focus on the positive behavior (which has not been easy....) I'm not a perfect parent by any means, but I am sure her clinical behaviors are directly linked to when her immune system has gone haywire - you can tell by her eyes that she's not even "home" when the behavior is escalated.

 

He sent a referral to cardiologist, and requested every kidney blood & urine work possible (thankfully he is a ped kidney specialist) - he was way more comfortable talking about her heart and kidneys than her behavioral symptoms, which, thanks to the forum, I was prepared for.

 

So, long story short, on to the next step. What is a phone consult with Dr. K look like? What is the cost? How long, what can he tell you? Is it better to go through his I-Consult process (as I am in Canada, I notice we could access that on his website). Any information is greatly appreciated....

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Hi,

I am not sure how dr K. Does his phone consults, but just wanted to give you some reassurance that you will be in good hands with Dr. K.

One word of advice is to have your questions ready and written down for him as he is a wealth of information about pandas.

We saw him in person and it might have been about 500$, and worth every penny as we spent a lot of time and tears going from one doctor to another, so I know how you feel! This was a year ago, so not sure what his prices are now.

He is a bit quirky, and I think there is a method to this (just not sure what it is...ha ha!) Anyway Dr. K. Gave us our son back so I am very grateful to him.

You can email him about the phone consult or call and ask his receptionist if no one chimes in about the process.

Keep us posted. Don't give up! There is help and hope!

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I didn't think of the study, but you might want to check into that too. You can contact the NIH and see if you qualify. They will not take your child if any treatment has been started such as the steroid burst, so that is something to consider if you decide to go that route.

It is free!

Either way you will find answers and help.

Good luck!

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Agree with patric! Cut to the chase and go straight to the expert and save yourself a lot of angst! We did in person consult in march, flying for first ivig next week. He's seen so many pandas kids, he knows what he's doing. Still $500/1hr consult and worth it! Call his secretary Diane on a Mon/Tues/Wed AMs only to set up consult and go from there. Good luck!

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I looked into the study and she falls into the excluded category due to the dec. Rheumatic Fever diagnosis - the docs we have been working with are not willing to even talk pans, only chorea - but neither one of them have ever seen/worked with chorea in a child so young. Problem with chorea (and something they can't answer) is that the relapse of symptoms in march attached to the fever/virus "doesn't make any sense" (their words).

 

Dr. K responded to my email quickly and stated that her case was complicated due to the RF, but we was willing and excited to consult - which was completely refreshing to hear. I am so done with "this is just so rare" (I want to scream - just because you think it is rare doesn't mean it doesn't exist!!!)

 

I think we will get the e-consult process going as it looks like the pricing is similar to the phone. He would review all her labs & diagnosis up to this point, provide detailed written thoughts around diagnosis/current treatment, and recommend other treatments as necessary. At this point, I'm thinking it would be worth the investment.

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Yes, yes, yes! So worth it and get on right treatment path ASAP. Print out the new white paper released by Dr Susan Swedo from NIMH last month on PANS/PANDAS to give to local Drs. (find it at pandasnetwork.org) Research is based on part on Dr K's stats and his name is mentioned in it so his opinion should carry weight with your local drs. Also print out newly updated NIMH website on PANDAS to bring to Drs.

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