redfox

Fuelforall -- thanks for the acronym breakdown!

Very interesting - thanks for the input. I feel like my situation is similar to your sister at times, just a lot of inflammation that would have otherwise gone undetected. Agreed that it tends to be a breeding ground too.

This is SO interesting! 'nevergiveup' - I think you've come such a long way. And sorry for not "getting it", but what does GB and CIDP stand for? I've just started seeing an immunologist locally - who is familiar with PANDAS and seems to be all over it. All of this discussion makes me feel like I might be in the right hands. On a side note, have you heard or seen any connection with allergies being part of the issue with the immune system levels...similar to the impact that strep, staph, etc. are having? Allergies seem so "everyday" to me and the others are obviously infections, but I'm just curious. Starting to have this feeling that his "system" is compromised and it seems like his allergies don't help -- may not have been the cause of the initial onset, but might be a constant drain on his system that enable the tics/ocd to linger?? Thank you so much for all of the input!

My son had this symptom, but oddly enough, it appeared post-IVIG ... about 6 weeks out. It lasted for a couple of weeks and then it was gone. We are 16 weeks out now and I haven't seen it since. It was never a part of his PANDAS symptoms pre-IVIG.

Hi Joan! We also did one round of IVIG in the Spring. We are going on 16 weeks post treatment and feel similar to you with a lack of results. We did experience a decrease in OCD symptoms, but fortunately, the OCD was never over the top -- so it also makes it hard to say whether I'm really seeing a decrease or not, but my gut says that part is better. My son's tics are about where they were, maybe slightly better. But as always, there are good days and bad days, so I feel like it's hard to say and even harder to attribute to the IVIG. So in the end, we feel that we didn't get much of a change from the 1st treatment and find ourselves struggling with where to go next. I had no idea that people were doing them so frequently, makes me wonder if we need to move forward with another round. Thanks to "nevergiveup" for your post -- it was enlightening and makes me wonder about the autoantibodies and how strong they are. Can I ask what helped you to determine there is definitely an autoimmune disease at play? Did you have immune system test results that showed low levels, etc.? We just did blood work so I'm curious to know where the levels were before and if you saw a direct correlation between the symptoms and her IGG levels. Also, what is the Igenex test? Should this be something I should pursue? Thanks for the input! I love this forum!!!