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Post-T and A Strep? Help needed


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DS, 22, has had Pandas since he was 6. No incidents during high school, but came back twice in college after strep. We saw Dr. L in June, who recommended T and A, which he had three weeks ago with Dr. H. Pending operation, Dr. L gave him clindamycin 300 mg 3 X day. After oral amoxicilling following T and A, I had him continue the clindamycin but we ran out. I called Friday for a refill but Dr. L was out and I was told to call back Monday.

 

After T and A he told me he thought he still needed the antibiotic, but would not admit to OCD (too old to tell me?). Yesterday, DD 19 told me he came to her for some makeup to cover up redness on his hands. This is old OCD, almost BDD, where he thinks his hands are so red people are staring at them. Needless to say, he has a bit of pinkness on his knuckles that is absolutely nothing out of the ordinary. (When he had this two years ago at college, he finally admitted to me suicidal ideation--I had to fly up to his college and put him in ER to get temporary psych admission.) Yesterday and today, I have noticed him muttering to himself and today random exclamations of *******, a racist term. Am feeling sickening sense of deja vu.

 

A few days ago I noticed a red rash on the back of his neck extending into upper back,perhaps 3 inches by 2--still there, but fading a bit. Was worried about strep but he agreed to go to PCP for strep only if it got worse. (I was being too dramatic.) Then saw a small rash on his back and another small one on his chest.

 

In June, Dr. L suggested DD get evaluated, but next opening not until beginning of October. In meantime, tried to get ball roling with her new PCP. She has rheumatology background and is not dismissive of Pandas (relief as she has JHU training) but also knows little about it. DD's results came in Friday. ASO at 684 and antiDnase B at 146 (upper limit on test 125). (Don't have exact numbers as copying machine broken--was going to get tomorrow to post for advice on further testing.) DD hasn't been tested for strep for nearly two years, but brother had it last September. PCP thinks Pandas definite possibility. DD was in ER Wednesday for chills and high fever (103) with severe asthma attack (lips turned blue). I tried to get ER to test for strep but they didn't see need as glands and throat seemed fine (I did say family history of symptomless strep that tests positive). ER of course not ideal place to argue and they were much more focused on asthma and concern about recurrence of pneumonia (she was hospitalized six days in May for necrotizing pneumonia). They did a bunch of blood tests and found nothing; Xray showed "no clear sign of pneumonia." Nonetheless they gave her IV Avelox and prescription for seven days of Avelox 400 mg.

 

What is next best step for DS (will try to sort out DD tomorrow)? Go to Pandas friendly ped (he referred us to Dr. L) tomorrow for strep culture and ASO, anti-Dnase B tests? Call Dr. L's office for abx refill (not sure clindamycin best choice at this point)? (He has post-op appt with her August 8--not sure how responsive she is between appts.) Wait until Wednesday when he has follow up T and A appt with Dr. H? Am feeling acute time pressure--DS scheduled to go back to college August 20--he can't afford to mess up another semester because of this wretched disorder.

 

Much thanks for any and all advice.

 

Ko's Mom

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We too were told to remove tonsils by Dr. L and our experience was similar. Huge pandas flare started on day 4 postop even though we had given iv antibiotics and stayed on po antibiotics afterward.

 

I would not mess around........get to the doctor who will prescribe you additional/different antibiotics, whatever you need.

 

I would try on Monday to call office...tell them he is in flare from tonsillectomy and tell them you need a response THAT DAY. If they don't come through, get to the next best person who will help your son.

 

We are still in the flare from the tonsillectomy 8 weeks ago. FWIW, we went back to the same clindamycin/rifampin combination that seemed to stop flare before the tonsillectomy and it didn't work. We then got tonsil culture results back and changed antibiotics based on that but we are still struggling.

 

So my message is....get on it as fast as you can.....

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Kimflow,

Thanks for the message of urgency, whether this is post T and A flare or new strep from his sister. (He has long history of symptomless strep that cultures positive.) I am wondering whether its worth culturing to see if this is new strep and whether it would be beside the point to get ASO, antDnase B.

Ko's Mom

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