In the initial treatment stages of PANS- have q's

[mybabyo]

So, back in November, Dr. Rao started treating my son for tics/ocd possibly caused by high virus titers cocsackie(1:1600), Parvovirus (6.6), CMV (6.0), HHV6 (7.0). He did confuse me a little when he said initially that these numbers were not necessarily high enough be be characterized as PANS. Is that true..were yours higher?? Yet the lab reports put them in the high category. He then did the Cunningham Panel and his levels came back DRD1(4000), DRD2L(couldn't get due to shortage at lab), LYSO(640), and CamK(139). He confused me further because at one visit he told me these number were suggestive of PANS probably caused by the above viruses, the next visit a week later I had my son and husband with me and I wanted Rao to repeat his findings, he told us that the Cunningham Panel numbers were not neccessarily suggestive of PANS but that he was going to go ahead and treat him for it and see what happens. What?? Can any of you shed some light on this, perhaps these numbers mean something to you that you can explain and help me understand because he has me confused.

He went ahead an put my son on Acyclovir anti viral. We have been on for 2 months. We had new labs done last week and I had them fax me a copy. They did not test Coxsackie again for some reason but Parvo went down to 4.8, CMV went to 5.8 and HHV6 for some reason could not be completed at the lab. How fast can I expect numbers to go down on antivirals.

My son's IGG went from 609 to 380 during this time. I know that measures his ability to fight infection but not real sure exactly what this means for his immune system? He also did a new test on him which was the Candida Albicans. He tested really high at 18.9. I am assuming these means a yeast problem but what does that have to to with PANS and his tic/ocd symptoms exactly? And last, we are waiting on more test to come in which are mitogens I think(tetanus toxoid AG response, pokeweed mitogen response, phytohemagglutinin PHA mitogen, and candida albicans Ag response. Can anyone tell me what these are and what they tell us? I am considering doing the MTHFR only because I have heard it mentioned here. What exactly do the mutations found tell me. I'm not sure I understand the test but hear once I know how to interpret it can be very helpful to recovery.

My son is 30-40% better depending on the day. Initially he was about 80% better but some symptoms have come back. He is also on NAC and Tumeric for tic control. I'm not sure if the improvement is due to lower virus titers or the NAC/Tumeric.

Sorry for all the questions, once I get educated I hope I can give back to this board and all of you as much as you are helping me

[riffleshell]

I can't answer most of your questions but there's one piece I'm willing to take a stab at...

 

I don't know this test for Candida, so I don't know what an 18.9 means. But Dr. Rao told me that Acyclovir can increase yeast. Are you giving a probiotic with the Acyclovir? It's possible that increased yeast might explain part of the backsliding from 80% better to 30%-40% better. (Could be a million other explanations too however.)

 

Good luck!

[pr40]

" I am considering doing the MTHFR only because I have heard it mentioned here. What exactly do the mutations found tell me. I'm not sure I understand the test but hear once I know how to interpret it can be very helpful to recovery.

My son is 30-40% better depending on the day. Initially he was about 80% better but some symptoms have come back. He is also on NAC and Tumeric for tic control."

one thing that 23 and me gene analysis can tell you is if NAC and Turmeric have side effects on your child because of sulfur in them.

 

about tests: they are not exact. you want to see a trend. if it is downward, that is great. if that downward trend is accompanied by lessening of symptoms, you hit the jackpot -- one cause of p/p identified.

[MaryAW]

I have heard many times at conferences that PANS is a "clinical" diagnosis. All of the tests can help you understand the underlying trigger (if you're lucky). You do not need a smoking gun to say your child has PANS. If he/she has the symptoms (see the link below)and responds to the treatment, that's enough. 4 years later, I don't know what actually triggered my DD's PANS. She had a virus which turned to bronchitis weeks prior to onset - maybe??? I have learned A LOT about her immune system, however; and now know that she has Specific Antibody Deficiency which led to many illnesses when she was younger.

 

I will say her best benefits came from getting her vitamin D level up in the recommended 50 - 80 range and supplementing with the Omega 3's. Use high quality supplements only. My DD is well on her way to healing. We have many months symptom free

 

http://latitudes.org/downloads/pandas-pans-scale.pdf