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Why the Whole Family Should Run Titers


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Thanks, Wendy and Rachel. Good ideas. Right now, I still have a call back into our family doc to discuss the urgency of abx treatment, but they haven't called back (sigh). We're planning to explain the situation to the LLMD tomorrow and ask for his recommendation for how to proceed, but don't want to step on that appointment because it's only our 2nd for PANDAS ds (and the one where the LLMD will be reviewing results of all the blood work he ordered at the 1st appt).

 

Still hoping that a simple phone call from the LLMD to the PA at our local family practice might do the trick, provide enough "CYA" to get the abx script. Guess we'll see....

 

P.S.: Rachel, loved the line about "in Michigan it's easier to get crack than antibiotics." If only it were a joke!!!

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Just wanted to share this update. As I posted on another thread, our wonderful new LLMD agreed without hesitation to prescribe another month of clindamycin for our youngest, based on the dramatic spike in his ASO titer. (Actually told us "seems like a no-brainer, doesn't it?" LOVE this guy!!!)

 

So guess what? Within 10 days of our youngest (carrier) starting the clinda, our PANDAS ds began improving dramatically! The cognitive fog cleared, headaches abated, dizziness and nausea gone, etc. More importantly, he began plowing through his homework again and doing well on quizzes / tests. What a relief! Of course, our family doc will dismiss it as coincidence - again - but it's nice to know that the LLMD is fully supportive.

 

Ten years from now, I pray that there will be a clear, unambiguous, accepted medical "standard of care" for PANDAS / PITAND so other poor kids won't have to fight for treatment every single freakin' time....

 

 

Sigh. I'm just SO tired of everything with our local docs being a battle.

 

Hadn't checked ASO on the rest of our family in 3 months, when they were falling but still well above "normal" range. So I asked our family doc for orders to run titers again on the 4 of us (not including our PANDAS son). They called Friday with the results. For 3 of us, good news: ASO continues to fall (although my wife and I are still above 200). For our youngest ds, not good news: after falling from 597 to 254 after a month of clindamycin, his ASO has now risen back up to 499. No overt strep symptoms... but then, none of us ever had any "classic" strep symptoms or positive throat cultures.

 

So we begged for another round of abx for our youngest, noting that the clindamycin certainly worked well before and dropped his ASO dramatically. The nurse called and left a phone message explaining that the PA had "consulted with an infectious disease specialist" who told him that "abx would not be helpful in this situation." Huh?!? Clindamycin clearly helped before, leading to a dramatic drop in titers for our youngest. His ASO has risen 250 points in 2-3 months, which pretty clearly indicates a GAS infection. And he's living in the same house with a kid who has "RF of the brain." What the H-E-L-L ?!?

 

(Incidentally, this is the same ID doc who declined to take our PANDAS ds on as a patient because he "didn't see what else could be done.")

 

Our PANDAS ds has hit a minor rough patch in the past few weeks. Now we know why. And the local doc - who knows the full history and has seen the effect of abx for our PANDAS ds - won't do anything now because the specialist says it won't help.

 

ARRRRGH!

 

We see the LLMD in a couple of days for our PANDAS ds, but he's never seen our youngest, so he can't prescribe anything for him. Hoping he might agree to call our family practice PA and advise the use of abx for the youngest. Think the PA is just worried about having an expert recommendation for "CYA" purposes.

 

Is it just me, or do many docs seem to have abandoned common sense these days? (Rhetorical question dripping with sarcasm....)

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From your mouth (or fingers from typing) to God's ears! Glad things are improving!

 

 

Ten years from now, I pray that there will be a clear, unambiguous, accepted medical "standard of care" for PANDAS / PITAND so other poor kids won't have to fight for treatment every single freakin' time....

 

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