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Younger sibling showing symptoms


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My 9 year old DS was diagnosed at 3. Onset was triggered by undiagnosed chronic strep and manifested in compulsive urination and a leg "scratching" tic. We are managing by seeing a pandas friendly doctor 4 hours away. She has him on daily Azithromycin as well as a cur cumin supplement and nystatin.

 

Here we are in the thick of what seems to be a pandas exacerbation in his little sister. She is newly 5 and never shown any indication of this before.

 

For a week now she is compulsively "urniating". Runs to the bathroom every 10 minutes and tries to go. At the same time, she's suddenly germaphobic and fearful of bugs (SO unlike her).

 

Our local pediatrician is now our ex pediatrician. She refused to discuss pandas with me and "educated" my daughter about germs and holding her pee.

 

Our pandas friendly doctor has graciously prescribed an Azithromycin trial and labs. She is on day 6 of Azithromycin and ibuprofen with zero improvement. Labs won't be back until weeks end.

 

With DS, his symptoms vanish after 48 hours on antibiotics. The facts that hers are not improving has me in near freak out mode. I've suggested switching abx and am waiting to hear back.

 

Suggestions?

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I have 2 PANDAS kids, my son's onset was at 19 months/dx at 26 months. More than 2 years later, his older sister, at 5 1/2 years old had her onset. If I have learned anything over the last 5 years, it's this - every single child presents differently, even children from the same family.

 

When my daughter had her onset, she would be 100% symptom free with a 30 day course of cefdinir (penicillin allergy) and nothing more - didn't need long term abx, nothing. Abx took less than a week to "kick in".

 

My son, however, would take up to 2-3 weeks before we would see improvement, and it would take longer to see any real recovery during flares. They presented like night and day.

 

2+ years post onset however, the plan that always worked with my daughter (30 days abx) stopped working and we had to resort to other options (combo abx and IVIG).

 

The point being - just because one child responds a certain way to treatment doesn't mean the other will respond the same way. Not only are their responses to treatment different, their symptomology is also vastly different - my son has more tics and compulsive behaviors, and my daughter has more anxiety and intrusive thoughts.

 

Night and Day - but both have the same triggers.

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