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nitshel

Nagging doubt - need some assurance

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Hi

We are battling a sons tics - getting all sorts of tests done - looking at Lyme, coxsackie, myco etc. While we will do everything in our power, I just need some assurance that this has worked for some people - that there are others who have put their children through all kinds of ABX medications, anti vitals etc and achieved success. I realize only folks who are still struggling stay on in the forums but I am hoping you have heard of success and that there are some of you who have achieved it.

 

Just need to hear of some happy endings!

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My daughter's tics have disappeared (at least temporarily 6 months or more) from a month of steroids and zithro each time.

 

we chose not to go down the "testing" route, as we have a strong history of two older siblings with PANS (both remitted with autoimmune tx) and I was not interested in fishing for more complicating factors. I hope that makes sense.

 

have you tried steroids for him?

does he have psych symptoms, too?

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From all my years here, this is what I've come away with - if a child has Pans/Pandas, there is no "cure" aside from time. As kids mature past puberty, they seem to become less and less sensitive to the impact of a bacterial illness. Some of this is a physical reason - when you're born your thymus is quite large relative to the rest of your body. The thymus is what produces new antibodies against new antigens - it's like the recipe kitchen. As you grow, the thymus starts to shrink, so that by the time you've past puberty, it's the size of a walnut or smaller. This may be because when you're young, your body encounters a lot of infections for the first time and needs an active kitchen to cook up new antibodies to previously unseen bugs. As you age, your immune system has been around the block and the need to a large research kitchen is less. So the aging process is one possible reason that adults are less prone to Pans issues.

 

The treatments you see discussed here - long term abx, plasmapheresis, IVIG, steroids, supplements, homeschooling, CBT/ERP - are aimed at remissions. Hopefully long term remissions. But nearly all the kids I know who are still kids are still susceptible to a Pans flare if they get sick again, even if they've enjoyed remissions of several years. My kids are in a great spot at the moment - life is exceptionally, joyously normal. But they still have Pans and are still vulnerable. They are healthy but not "cured".

 

The key to long term remission is identifying the right infection/trigger and treating that properly. In some cases, it's an obvious strep infection and doesn't involve any other issues. In other cases, it can be a chronic infection (long term sinus issues, lyme, mycoplasma) that then weakens the body and other issues move in as well (viruses, chronic mold environment, nutritional deficiencies, yeast). It becomes a complicated, expensive, draining process of peeling an onion - having 20 people toss out ideas to explore and you having to decide which ones to pursue. But even the complicated cases - most parents eventually uncover layer by layer and get their kids back. There's not 100% guarantee. There may be people out there who don't have this experience. But from the people who post here, this is what seems to be true.

 

I can tell you that having been thru truly awful times, things never got as bad as the early days. As traumatic as things have been, as ugly as some periods were, we never had to go back to the very darkest days, partly because once we had medical support, the element of feeling like you had no one who believed you went away. I could get help with a phone consult or office visit or late night call for a Latitudes BFF. As I learned, I became empowered and that made a lot of difference.

 

Between the two kids, we have been through steroids, T&A, Pex, IVIG, probably 8 different abx combos, metals chelation, mold removal, pyroluria testing, methylation testing and supplements, vision therapy for convergence insufficiency, treated EBV and done lots of CBT/ERP. We've dealt with vocal and motor tics galore, moderate OCD and all the lovely Pans symptoms thru many, many flares. If someone had told me 5 years ago what was in store, I'd have run away from home.

 

I don't dare write a sentence that says "Yes, my kids are 100% and are done with this %$#@!" But I can say I've gotten my kids back long enough to get to know the real them and they are awesome and strong and insightful and all our late night CBT sessions and talking thru fears have brought us closer. There have been gifts along the way. I am an entirely different - and hopefully better - mom than I would have been. Right this moment, they are 99 and 100%. That could change. They are not "cured". But they are not permanently damaged, they are happy and life is good.

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As LLM has already said, and quite eloquently, too, we've experienced very high highs, very low lows, and are currently enjoying the slow, incremental march toward a "new normal."

 

And it is all worth it, absolutely! And your child's shining moments, achievements, beaming moments of pure happiness, will validate this far more than anyone on this forum ever can.

 

And, finally, rest assured that not all of us who continue to participate here do so because of continued, sustained "struggle." Some of us have reached equilibrium, in fact, but continue to check in periodically to stay abreast of the research, to see how our Forum Friends are doing, or to offer a word of support or encouragement for someone newer on the path than we are.

 

Godspeed! :)

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