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Appointment Tuesday to convince primary provider for abx trial


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I'm looking for more of the wonderful, invaluable advice I see on this forum. My dd now 10 has had tics since age 4. She probably has some real minor OCD but nothing that interferes at this point. I asked our FNP if she'd be willing to give us a trial if abx to see if we notice improvement. I was bold and straight up asked for a month. I think this is where she got apprehensive and said she'd like to run tests first. I'm not sure what she has planned but I'm guessing ASO and strep culture. I told her that its not uncommon for those results to not show anything (from what I've read here)

She at least has heard of PANDAS.....says she even has a patient with a confirmed dx. I think that child receives his/her tx in another city though.

So what info should I bring her. Beside my dd's history I mean. Should I even bring up use high Cam Kinase score she had three years ago? How can I explain easily what that means. That Cunningham article is way above my head.

What abx should I request? In my original message to her I asked for augmentin or azith. Those SEEM to be the ones with good success rates.

Anyone here been successful in convincing a dr for a trial? What was your argument?

 

TIA for any advice for this upcoming appointment. Prayers will help too! :)

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Thanks everyone. I actually am NOT familiar with that scale so that is great advice. MomtoJake....did you just suspect PANDAS too and were wanting a trial to confirm or decline your suspicions?

 

I knew it had to be PANDAS- it was pretty clear cut with my DS. Strep that did not clear with Ammoxicillan, (I didn't know) progressed to Scarlet Fever, then overnight presentation of severe OCD, tics, choreiform movements, separation anxiety, urinary frequency, tics etc. My husband and I are avid Mystery Diagnosis watchers and both remembered "Sammy". I googled "Sudden onset OCD" and I was convinced. I went to my Pediatrician to tell her what he had and get ABX. Luckily she had seen one other child with PANDAS before although she was not well versed in treating it. Initialy she did not want to give me the ABX until she ran titers, but relented when I gave her the article. My DS had an immediate positive reaction to the ABX. He was diagnosed with PANDAS several weeks later by Dr. Murphy in St. Pete, FL.

Edited by MomtoJake
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Yes I'd say that's a pretty clear cut case. How is your ds these days?

My dd has tics, motor and vocal that have waxed and waned over the years. but for us there is no severe OCD or known strep infection to relate it all to. Just a suspicion on my part, mostly because of a high cam kinase score three years ago.

So Even though I'm not CONVINCED we are dealing with PANDAS I do not want to leave one stone unturned. I'm hoping a trial of abx will give me some answers. Whether to pursue PANDAS or head in Another direction.

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Thank you, THANK YOU for the advice. It was a successful appt. our provider agreed that a trial of abx is a pretty benign treatment plan. Like I said before I am not convinced this is PANDAS or PANS. But I can't let it go without a solid try. So she gave us 6 weeks of Azith. ( Im wondering though if the dosage might be low.......Can anyone chime in with their azith dose)

i am so happy that she is willing to work with us in finding answers. She also ordered some extensive blood work. That was the only negative part to the day.

Dd has severe anxiety for blood draws and we could not get it done today. I'm hoping my dh has better luck tomorrow. He's not as high strung as I am so he's probably the better one to take her for this.

The article Chrissy posted is excellent. As our FNP was skimming it, I'd see her nod in agreement and make quick notes and she'd add things to the lab work up based on what she was reading. I was so grateful not to get shot down. She asked if she could keep the article. I told her "by all means, please school the rest of the clinicians" :P

Nice to know there are mainstream providers out there who DO want to help and are humble enough to admit they don't know everything, but are willing to learn.

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