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What’s better for tics only - IVIG or PEX?


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My son (almost 7.5) has tics only PANDAS (no OCD). We live in Canada and were planning to go to the US for IVIG but now I’m reading some people are saying PEX is better for tics and IVIG is better for OCD. Any insight would be greatly appreciated!

If we do go with IVIG what’s a better dosage - 1.5g/kg or 2g/kg? Seems that PANDAS doctors have different opinions on this. 

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  • 3 weeks later...

Hi AlwaysWorriedMom, I'm so sorry that you haven't had the responses you need to your questions. I don't know if the reason is that they don't have the specific answers, or that folks are not on the Forum right now. A lot of people have joined Facebook for PANDAS/PANS. Did you ever join a group that you can connect with? 

I know it feels discouraging to not see responses coming in, but it's not personal! I would give advice but it's outside my area of expertise. I wish I could help. 

Do you live in Ontario? 

I'll watch for a response. All the best, Sheila 

 

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  • 1 month later...

Hi,

Our Pandas doc never recommended IVIG or Plasmapheresis. The reason was, with our kiddo's illness, we would just be treating the symptoms and not the underlying cause. This of course could be very different in your child's case and could offer a period of much needed relief. At the time these treatments were available, we came across at least one of the underlying causes for our kiddo's Immune system disfunction be mitochondrial cell decency. Had her doctor not found the mitochondrial decency, her symptoms would be unmanageable and IVIG or Plasmapheresis would have been a consideration to offer relief. She sis have steroid blasts that worked early on but like IVIG and PEX they treat the symptoms. 

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