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sullysmom

This is what I struggle with....

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How can you tell if it is Pandas or just plain old anxiety?   Especially since Pandas is a clinical diagnosis.  Took my son to see Dr Trifiletti last week (loved him!!) and he ordered a bunch of blood tests.  Waiting on the results.....but I keep going back to 'what if he just has anxiety? - especially if the blood work doesn't show anything. 

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Its hard to comment without knowing much about your son.   How old is she?  Some more information might help.  Have you read through the entire symptom list?  Have you read the article OCD in young children?

But if I can guess you did not go to Dr T without very strong reasons.

 

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Sorry, I should have given more information.  My 7 year old son started with panic attacks and a fear of choking that started out of the blue on Sept 1.  We had put our dog to sleep a few week before this (and my son came with us)  He has always been a little anxious and attached to me but it got much worse around this time.   Right after it happened, he tested positive for strep.  When I googled strep and anxiety, I learned about the world of pandas.  His eating is getting better slightly, his anxiety is so much better and his personality is pretty much back to normal.  I had made the appt with Dr T a few weeks ago and kept it just in case.  I guess I am questioning myself more than anything....did I read the Pandas symptoms and panic and assume he has it or can it just be anxiety (related to the dog situation)?     Will the blood test results confirm Pandas for sure or is it just a guideline?

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1 hour ago, sullysmom said:

Will the blood test results confirm Pandas for sure or is it just a guideline?

Unfortunately, there is no clear definitive biomarker for PANDAS, so blood results are just a guideline.

Our son was also always a bit more anxious that our other kids, but we got a PANS diagnosis primarily because of an extreme ramp up of OCD symptoms after some (unknown) flu-like sickness when he was 9.  He actually had a bout of severe OCD at 6, that mostly went away months later.  We wish we had been tuned into PANDAS/PANS back then (because if caught early, it should be better), but we didn't learn until he was 9.

So, you are in better shape than we are.  If unsure, Dr. T. might weigh the risk of giving him longer-than-normal trial of abx vs. having PANDAS untreated.  Catching this early is a good thing.  Having gone through all that we have, I would be more anxious about untreated PANDAS than about wasting the time and money you have spent on a possible dead end.

 

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I will second bobh as a mom of a kid who first presented with OCD at 6, first "retreated to normal" for about 1.5 years, then had another blip which once again retreated (with therapy and medication) for more than 5 years before it came roaring back at age 12 and was much more intractable and much harder/longer to treat.  We could not get any support for PANDAs treatment or diagnosis at 6 or even at 7.5, and had to fight for it tooth and nail at age 12, but at least by that time there was more literature, more support and more medical professionals joining the fray.. 

I would err on the side of treating a possible case of PANDAs.  As our pediatrician at 12 finally reluctantly agreed to give us a longer trial of abx, despite her professional opinion that PANDAs remained an unproven diagnosis, she "took an oath to do no harm, and I don't believe an abx trial will harm him."  That was the beginning of my DS's recovery.

Sometimes you have to trust your instincts!  Moms (and dads) tend to have pretty great ones when it comes to their kids!

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  • Help us learn if blood type has a correlation with PANDAS/PANS   78 members have voted

    1. 1. If you are the biological mother of a child diagnosed with PANDAS or PANS (or you believe the child has PANDAS or PANS), please select your blood type below:


      • O +
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      • A +
      • A -
      • B +
      • B -
      • AB +
      • AB -
      • I Don't Know

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