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saidie10

DS having relapse 6 years after healing from tonsillectomy, 2 IVIGs, 1 year on abx...what's happening?!?!

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After 2 years of fighting pediatricians and neurologists, both my boys with the help of Dr. Rao and Dr. Infante were eventually confirmed in high PANDAS range on Cunningham test over 6 years ago.  Both had tonsilectomy's, IVIG's and 1 year of antibiotics and healed!  They recovered - it was truly a miracle and we were so thankful!!!  Very concerned though now.  My youngest son has been experiencing some unfounded fears/rage behavior (reminding us of many years of scary and heartbreaking behaviors) and now his OCD and tics are flaring.  What's happening?!?!  We sooo thought we were done with this.  Poor little guy has anyone else experienced this?  Recommendations??  I guess it's back to Dr. Infante - I hope he is still treating for this?!  I just can't imagine that OCD and tics can completely go away for many years and then come back and not be related to something triggering it.  There is no history in our family of OCD or tic disorders.  Only Rheumatic a fever!

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Clearly, you'd want to look for infections.  I'd set up an appt with your pandas doc (or whoever; really, any doc who will do it) to run some bloodwork ASAP, both for infections and immune system stuff, IgG levels and so forth.

In the meantime, I'd haul the kid off to the nearest urgent care for a swab and throat culture today.

It seems to me that this sort of situation is to be expected with PANS/PANDAS.

Edited by jan251

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Check for bartonella!  Lymes co-infection.   Our son raged and OCD out of no where.   If he is young it could be he is entering puberty and that can rock their world as well. For us it was three long years and the fear is always there. We cleaned up his diet and gave supplements based on organic urine test and 23 n me test. Best thing I ever did!!

His ups and downs now are mild compared to before (no soy, dairy or gluten)  He tells us his brain is calm now.  We found that he was depleted of B1 and B2 as well by the test results. I thought big deal when I heard that but big change once we started to supplement.  

Our immunologist claims that these children have innate immune response to various triggers depending n their genetic predisposition. This causes inflammation and the mental symptoms are a response to that inflammation.

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Thank you all so much for the responses.  We are scheduling with Dr. Infante ASAP and I got an email back from Dr. Cunningham office and they concurred that even if they appear to be healed things can trigger relapses even years apart.  We had no idea!  My son is 12 and is in the beginnings of puberty so that was something I did not think about either as possibly impacting things.  

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There are a few possibilities and others have mentioned some of them. Has he had a vaccine in the last few weeks or months? That triggers new or returning symptoms in some. Have you moved or changed schools? That could indicate something in the new environment, such as mold. Any recent dental work? That can be a trigger for some. I agree with HopeinHIM - if he hasn't been evaluated by an LLMD for Lyme, Bart, etc, this would be a good time. These infections deplete the immune system and can cause allergies, immune deficiency and autoimmunity.

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I am new to the PANDAS/PANS possibility.  My son fits almost everything I have read as far as symptoms.  I had Lyme when I was pregnant with him.  Looking for a doctor in San Antonio area to order The Cunningham Panel.  Cannot see Dr Infante without a diagnosis.  Any suggestions?  Even if we have to travel.  Thank you!  

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