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Both kids to GI dr this AM.

Dr ' what exactly are they taking antibiotics for'

Me 'an autoimmune disorder'

Dr 'What is it called specifically'

Me 'pandas' - usually call it post infectious encephalitis after strep and follow up further questions by saying pandas....frustrated 'pandas' came out first

Dr 'you realize that's highly controversial. how exactly were they diagnosed.

Can't even remember exactly what I said at that point. Mentioned Dr L & Dr Cunningham tests. I said I would like the doubters to explain why my Ds's ODD did not respond to a fistful of psych drugs but went away with antibiotic treatment and no longer takes any psych drug.

Dr:' your here for GI issues so lets stick to that'

 

Really??? Didn't you bring it up?

 

Sorry for venting.... Just tired of needing to 'validify' my Children's health issues to school, friends, family and anyone else. Why couldn't I have said post infectious encephalitis ....

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I'm so sorry. I feel your pain! It just makes me so upset with the medical community for being so close-minded. They clearly don't have the answers so why are they so quick to dismiss other possiblities. I feel so strongly that to find the answers, we all have to be open-minded and consider all avenues since we don't know what is going on exactly.

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Both kids to GI dr this AM.

Dr ' what exactly are they taking antibiotics for'

Me 'an autoimmune disorder'

Dr 'What is it called specifically'

Me 'pandas' - usually call it post infectious encephalitis after strep and follow up further questions by saying pandas....frustrated 'pandas' came out first

Dr 'you realize that's highly controversial. how exactly were they diagnosed.

Can't even remember exactly what I said at that point. Mentioned Dr L & Dr Cunningham tests. I said I would like the doubters to explain why my Ds's ODD did not respond to a fistful of psych drugs but went away with antibiotic treatment and no longer takes any psych drug.

Dr:' your here for GI issues so lets stick to that'

 

Really??? Didn't you bring it up?

 

Sorry for venting.... Just tired of needing to 'validify' my Children's health issues to school, friends, family and anyone else. Why couldn't I have said post infectious encephalitis ....

Right? I find myself being so, so cautious about what I say to docs I don't know. Makes it so hard to get to the meat of the situation when you're so afraid they are going to roll their eyes and and disregard everything you say because they've already decided you're a nut job. At the hospital this week end, the docs we saw were colleagues of a butthead rheumy we saw at the same hospital...they kept asking about what he said, and why this, why that...who is following her for her PANDAS? Her pediatrician! Because we cannot get any fricken help from specialists who stick to protocol and will not do anything if there is not a protocol for it so are willing to just pretend that my child's suffering is a figment of her deluded mommy's internet enhanced immagination! Don't get me started....oops! Too late!

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I usually practice different responses before going to the doctor. Then when I'm actually there, I blurt out something I later regret. Unforunately, my mouth always chooses to give a long explanation with too much info instead of a cut and dry one.

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I got that same "you know that is controversial" from our ENT when I asked him to culture our son's tonsils when he removed them. He said that it was not necessary because he "DID NOT have strep!". I told him that Dr. L requested the culture and he rolled his eyes and said that it was a waist, but gave in. Results..... Core of the tonsils were POSITIVE for strep. At the post T & A surgery....he sent in his Physicians Assistant and was "too busy" but not too busy to consult with her outside our exam room door and then send her in to remind us that PANDAS was not "real" but contoversial. Apparently I still have unresolved issues with that experience!

Edited by 3boysmom
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We should all get t-shirts that say "Unless you can disprove PANDAS, shut up!" and wear those to all our appts. How's this one "Don't treat me like I'm a Crazy Mom unless you want to see me get CRAZY!" And "Just because you went to medical school does not allow you to be a butthead." And one more "I may just be a Google MD, but my PANDAS research is more up-to-date than yours is!" Ok...one more "PANDAS is only controversial because doctors keep saying it is!"

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I got that same "you know that is controversial" from our ENT when I asked him to culture our son's tonsils when he removed them. He said that it was not necessary because he "DID NOT have strep!". I told him that Dr. L requested the culture and he rolled his eyes and said that it was a waist, but gave in. Results..... Core of the tonsils were POSITIVE for strep. At the post T & A surgery....he sent in his Physicians Assistant and was "too busy" but not too busy to consult with her outside our exam room door and then send her in to remind us that PANDAS was not "real" but contoversial. Apparently I still have unresolved issues with that experience!

Was your son on long-term antibiotics prior to the surgery? If so, which one?

 

Thanks!

Edited by Kayanne
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When we saw Dr.L, She mentioned a sibbling conection and suggested removal of our other 2 boys' T&A. Our ds11 (Pandas) already had his T&A removed 3 years before we knew about PANDAS. They had big tonsils and asymptomatic. to strep. The ENT would not give us antibiotics prior to surgery but on the day of surgery, I practically begged him to put antibiotics in the "drip" & he did (surely just to shut me up). Then in the recovery room I asked for a script of Augmentin for 2 weeks, he said 10 days and we met in the middle for 12 days! At the same time, we were waiting for strep titer results on us all (taken before surgery). They came in very high on the non PANDAS (as far as we knew at that time) brothers. So our pediatrician agreed to put them on Augmentin (like PANDAS son has been on for over a year) as long as we sought out guidence from a specialist. We then flew the 5 of us from Tx. to see Dr. B. That was 6 weeks ago & we just got the new strep titer results in and the middle son's anti-DNase has gone up from 780 to 1920 in just 4 months....WHILE on Augmentin. So now they are all trying Zithromyicon (changed 3 days ago) because PANDAS son's results came back positive for mycroplsma and maybe the other 2 boys are having strep that is resistant to Augmentin. (Dr .B believes that strep was hiding out in the sinuses of our middle son. This is a difficult puzzle to solve, and scarey to live through, but while we still have new things to try; we still have HOPE. No one has td us that they have nothing left to offer and in the wake of all the issues in Japan and around the world right now, I take this "cross to bare". Sorry to ramble and for the miss spellings, we are camping and I am on my iphone.

Prayers for healing,

Linda

Edited by 3boysmom
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