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Working on summary for Dr K appt coming up and some things are jumping out. This has been the first time we've actually taken an overall look at our 9 y/o's history. I am not doubting his diagnosis of PANDAS but am wondering if there is something more going on than just that. Every lab workup he's had done since 2 y/o to current shows very high monocytes, lab reports of 'rare white blood cells' in stool samples and just numerous other things that are making us go hhmm? ?

Will Dr K look at more than just the PANDAS during our appt?

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I would definitely bring these things to his attention. You can fax these lab results to him prior to your appointment if you are doing a conference call. If he doesn't give it the attention you think is warranted, you might want to talk with an immunologist. I've heard Dr. Bouboulis is great and really knows PANDAS, but not sure where you live or whether he does phone consults.

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Sometimes I just feel plain wacko trying to figure it all out. I hate to say this cause I know that there have to be some really good doctors out there somewhere but I am getting so fed up and frustrated with everyone we have seen so far. I don't even know if this is going to make any sense because its hard enough for me to sort out but In Oct , his immuno dr said his strep b numbers were 1360, then Nov Mercy hosp called local hosp here and got numbers they had just run- told us strep b was down to 860, then Jan back to immuno dr for reck and they say his numbers are 1360 and they were happy with 1360 because as long as those numbers weren't increasing they were happy. I tried to explain that - they had increased if in between there at our local hosp they were down to 860 and now backup somewhere he got a strep and we missed it. She said nope, we don't go by anyone else's lab but our own so we are happy. I pointed out how odd it was it was the exact same number again also, she said nope not odd its just staying stable where it was before thats good. Come to find out- the lab there tops out at 1360 ( so they truly don't know that his numbers aren't increasing). I went to local hosp to get his lab results to take to immuno doc to prove it and they claim titer numbers were never ran - they only checked for active strep- so why would Mercy hospital tell me they got those numbers and it was good they were coming down. I don't understand the point about any of them lying about any of this , it just makes me ssssoooo angry and frustrated with them all. Does this happen to anyone else, just this mass confusion where you feel like none of them know what the heck they are doing? I am just praying so hard for someone to shine a better light on all of this, just when I think we've found someone who can- they end up being as idiotic as the previous one- meanwhile the one that suffers from it all are the kids. gggrrrrrrrrrr

 

I guess all that just to ask , am I hoping for too much in Dr K ? that I would like to stop going to 50 different doctors and have one really good one take a look at everything on the table, not this one for this, that one for that- cause thats where I think they are not connecting the dots or misinf or something. Heck I don't even know if I make sense anymore LOL

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The PANDAS world can be very frustrating and confusing. What you need to do is to get all of your info together and let a specialist dig through it for you. The lab results were what I had suspected when we talked - I thought that that was the labs max. That is too bad that they did not tell you this. I think you are in very good hands with Dr.K! He will be honest and let you know if you are barking up the right tree and what the next step is. It is so sad what we have to go through to get our kids diagnosed and properly treated............Hopefully one day it will be different.

 

DeAnn

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Hey--Your Iowa mom just down the road! The two Iowa docs to whom you and I have both gone "get PANDAS" and are dx'ing it--they are not on the ball with treatment. Take a deep breath. DeAnn & I would not get you headed east to Dr. K if we didn't think he was the one to help sort this out for you. Prayers--Dawn PS Just remember Dr. K can a bit ecentric!!

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