Coming to terms, preventing flares

[MountainMom]

Hi. My son began antibiotics for Pans, Lyme and co infections just over a month ago. The transformation has been incredible. He wasn't in a flare- but I didn't realize after these horrible last few years- how far from baseline he was. He is doing so well but I'm struggling to wrap my head around what the future will hold- how to live life without spending every moment wondering when he will flare again and what will happen when he does....

So, I guess my questions are, what is the plan for when the next apparently inevitable flare comes, how do you keep going, and what, besides profilactic antibiotics should we be doing to prevent the next flare?

I hope you all have some great ideas. I'm feeling so at a loss.

Many thanks.

[bobh]

Fantastic news!

I am going to give an odd answer, and then answer the way I think you wanted.

There is something PTSD-ish about having dealt with a PANS/PANDAS child for years.  PTSD (Post Traumatic Stress Disorder) puts any normal person on edge about the possibility of being re-traumatized.  That terrible reality is something that can be worked on and changed for the better - there are tips and tricks and techniques that a few lines of reply here cannot possibly do justice to.  This is just encouragement to investigate that possibility (when you have a bit of a breather, like now), and it comes as much from personal experience as from your question.

I think that it is realistic that you used the words "inevitable flare", even though that doesn't help the PTSD-ish issue.  (It would be so much better for the next little while to be free from that fear.  The fear is exaggerated, though - that's how it works.)  I have found myself over time evolving through 2 stages, 1) investigating all possibilities of triggers (and there are so many) when a flare happens, and 2) after some years, recognizing that the thing has morphed into a more complex immune system thing that don't necessarily fit the simple trigger theory (or else, the triggers are so subtle, they can't be teased out.  The good news about stage 2, is that the child (ours, anyway) is better - we are into the smaller flares, not like the horrors of the past, and they are by definition harder to figure out.  We have only started this 2nd phase (if my thinking is even correct) in the last year or so.

So, if my thinking is right and there is such as thing as the stage 1 I described, and you are in it, it's a long road of getting familiar with what sets your child off into a flare. Some of what we have learned is weird - like the time our son had a huge flare after a teeth cleaning.  Those things are most efficient to figure out as you experience them.  You can read in advance about various experiences here or in places you trust, but its a lot of reading.  If you start reading around, take comfort that you can also get help from this and other groups when a flare happens.  In the meantime, have abx and ibuprofen handy (unless you have figured out that ibuprofen doesn't work).  Another place to do some reading, if you haven't visited, is pandasnetwork.org, in particular http://www.pandasnetwork.org/your.../post-traumatic-stress/ for help with coping as a parent.

Edited October 22, 2017 by bobh

[MountainMom]

Thank you so much for your insight and resources. Bobh, is your child on antibiotics all the time? What do you keep up your sleeve for when flares come? Ibuprofen?

I have one doctor who wants to put my son on antibiotics for the next eleven years and one who wants to do another month and then stop. 

I'm just curious what you've done.

Thank you.

[bobh]

Our son was on non-prophylactic antibiotics (a variety of them) for about 2 years, but then in the spring of 2016, he progressively got worse while on them.  We were frantic - something had to change, but we didn't know what.  We decided to take him off abx (Ibuprofen had not helped him, and this was a long term progressive worsening).  We eventually found out (after a teeth cleaning that produced a huge flare) that he had gingivitis, and when we dealt with that, we found some of the relief we were desperate for.

While he was improving with the mouthwashes and more regular flossing/brushing that we implemented, we tried a supplement that a mom in a local group we belong to found repeatedly kept and took her daughter out of flares.  I was intrigued when this mom reported that every time they ran out of this stuff and forgot to replace it in time, their daughter got worse.  The supplement is phosphatidylcholine, and I was glad to discover it was well researched for all kinds of things, but not specifically for PANDAS/PANS.  So, I had good documentation that it has been safely used at certain (higher than on the bottle) doses.  I tried my child on the (high) dose the mom had settled on, and took him on and off it several times, while keeping track of his soap use (which we have found to be a reasonable objective measure of his OCD).  The result was that his soap use was reduced (statistically significantly).  So even though it didn't take all the OCD away, it helped reduce it.  We have been on that for almost a year.

I was surprised to see that phosphatidylcholine is not much discussed in this forum, but there were a couple of posts about it.  I added my "research result" to one of those posts, here: http:// http://latitudes.org/forums/topic/18965-phosphatidylcholine/#comment-186762 .

Another mom (in another group local to me) that tried phosphatidylcholine after we reported our results did not find an improvement.  So, like most things (it seems), one size does not fit all, and this might not help your child.

Edited October 27, 2017 by bobh