Intensified sever motor tics after 1 year treatment

[Rhnv14]

Hello all,

 

I'm reading this forum for almost a year since my child DH was diagnosed with Pans caused by Lyme. You guys are inspiring and I learned so much here, though never posted before. 

DH is 7 years old. She was diagnosed with PANS very early in the game (with vocal tics and some phobias but nothing more), but her Lyme was diagnosed late (probably 3 years in), with many co infections we're treating with ABX. Our main struggle so far was mainly with vocal tics and some minor motor tics. It wasn't fun but manageable. 

6 weeks ago DH had her first IVIG, followed by a 2nd treatment a few days ago. In the last few weeks we're seeing a severe regression with her tics. Her vocal tics are almost constant, and she has a meaningful flare of new motor tics which basically force all of her body to move. It is intense and sometimes hard to watch. My girl has changed. The regression is noticeable and scary. 

Our doctors have told us this might be a very normal phase towards healing, though it doesn't feel like that. They claim the IVIG can stimulate exacerbation of tics that the body is fighting to get rid off. They ask us for patience tho my wife and I are terifired, so as our kid. 

DH has never suffered from any mental symptoms. She's is great at school, funny, focused. But the last regression is paralyzing. She feels it. Her body is just flared with tics that take us all backwards. 

Are you aware of a successful IVIG that starts with regression of symptoms? Are you aware of a severe motor tics regression after almost one year of ABX that is working clinically wise? Could that be a path to healing or maybe a bad sign? Am I missing something?

Any shared experience would be so appreciated. Many thanks! 

Edited May 5, 2017 by Rhnv14

[DreamingPanda]

Hi Rhnv,

I'm sorry to hear that your daughter is having all these symptoms.

I've had PANS for about ten years, undiagnosed until 2014, and Lyme at least since April 2016.  I've had three high-dose IVIG treatments since August 2014, and it was a different experience each time.  I've also done eight low-dose treatments for an immune deficiency.  Is she doing low or high dose?

The first two times I had high-dose IVIG (7 months apart after I relapsed severely), I had a post-IVIG flare about two weeks later, when all of my symptoms were terrible, and possibly worse than before treatment.  I did Prednisone bursts to get through the flares, and then I slowly improved over several months.  Recovery has never been linear--if I got rid of one symptom, another one would crop up.  It often felt like I wasn't getting better, but I was, though very, very slowly. 

My second IVIG combined with tonsillectomy put me into remission for several months, and yes, it started with a regression.  I think I would've stayed in remission if I hadn't caught Lyme a year later.

Basically, in my experience, the IVIG healing process can be extremely slow and unpredictable, and it's a two steps forward one step back kind of thing--and sometimes it's one step forward two steps back.  Six weeks might be a bit too soon to tell much of anything yet.  Hang in there!