Recovery Time

[eacampbell67]

Question -  how long does it take to recover from PANS/PANDAS?  I know every case is different, but just try to gauge where my dd is in her recovery .

She just started 2nd month of treatment(abx &herbs) -headaches & light sensitivity have gone but still has hearing sensitivity & cognitive issues. We believe it was 7 months from her exposure to the time we started treatment....

[bobh]

Experiences vary, but my feeling is that unless you catch it right away in treatment (i.e. within days of onset), the best you can do (until possibly puberty) is reduce symptoms.  I hate to say that people don't typically get back to 100%, but some do talk about getting to 90% with treatment.  Then also, the kids can regress again in a flare, and then get better again.  It also seems that as the disorder ages in the child, it can morph (become different in symptoms).

[MomWithOCDSon]

I'll offer that the younger the child and the quicker the proper diagnosis and treatment, the quicker the recovery.  At least, that's my long-term impression from participating here and other support groups/forums over the last several years.  Conversely, in kids who go longer without the "catch" and/or are older by the time PANDAs treatment is made available, the harder it is for them to "snap back."  Kind of like a rubber band; newer, tighter ones tend to snap back to their original shape, even if they get stretched out a few times.  But older ones lose some of their elasticity over time and can even become brittle so, like bobh said, they might only come back to 90% of their original size/shape or, in the most unfortunate/complex cases, they might even become brittle enough to break.

But even with what may appear to be a full or nearly full recovery, I do think you will want to remain mindful and vigilant for subsequent flares. More often than not, they're part of the package for a kid who's immune system is predisposed to dysfunction.  Employing prophylactic measures should prevent those from becoming full-on "episodes," but they don't always fully offset the new immune injury.

Good luck!

[DreamingPanda]

I agree that everyone is different.  So much depends on how old a person is, how severe, how long it's been untreated, and what kind of treatment they get.  And sometimes, there seems to be no rhyme or reason to how fast or slow one person recovers.

In my experience, I was untreated for eight years, had my first IVIG at 19, and after another IVIG and a tonsillectomy, I'd say I made a full recovery over a year later.  I've since relapsed twice, but that's because I caught Lyme disease, which complicates things a great deal.

From what I've observed in my own journey, it's very hard to give an accurate percentage of recovery, or to figure out when I've gotten all the way back to myself.  I don't know if I've ever been 100% symptom-free since I became ill eleven years ago.  I've stopped trying to assign a number to where I am in recovery, and I just gauge whether or not I'm able to live my life as I wish.  Ultimately, I think that's the best a lot of us can do. 

For me, there's never been a day or even a month when I've suddenly realized everything was back to how it was before.  It usually seems to be a painfully slow process where I shed symptoms and regain my "self" so slowly that I might not even realize it's happening.  It's easy to over-analyze ever day, every tic, and every little compulsion, but the overall trajectory is what's most important.  There will be ups and downs and flares for pretty much everyone, but hopefully, the underlying trend is towards the positive.

At my age and given how long this went untreated, it's possible I'll always have some minor symptoms.  But even if this is so, thanks to treatment, PANS hasn't stopped me from doing anything I've wanted to accomplish in my life.

So hang in there! You might be in this for the long haul, and there may be a lot of ups and downs, but yes, your daughter can and will get better with the right treatment.