Child better but what are we missing

[nitshel]

Hello everyone- we’ve been away from this forum for a while. Quick history- DS had bad tics - vocal and motor for 4 years. Treated him for Lyme and Co infections for a long time and even did IVIg but nothing really helped. Cunningham panel was “likely” but not definite. Lyme bands were indeterminate. However When we began treating his allergies (through shots) a large percentage of them went away and we were able to take him off the SSRIs. 

Over the past18 months we have seen a pattern. He is symptom free for the summer and then when we get into Ragweed season his tics come back. They become really bad in Oct/Nov And they stay until next summer. We do sinus rinse and Quercetin and Vit C but minimal effect. What are we missing? We told our doctor( DrB ) and he does not think it is histamine related (since DS is being treated for Ragweed via the shots). Any ideas on what we should be doing? 

[bobh]

It is so common for PANS/PANDAS kids to have flares in the fall.  Most parents (that I know) tend to blame the germs that circulate so much more via schools during the school year, then with most kid's summer lives.  Unless your son is homeschooled, how do we separate that possibility from the ragweed one?

Brainstorm other possibilities.  That is, withholding your own (or other's) criticism about lack of mechanism, come up with other ways in which his summer life is different than fall, winter and spring.  Then take a list of triggers (recall, some are environmental, such as mold) and starting linking or eliminating the various theories.

It looks like you have only had 2 autumns of experience - not a lot to go on, but I will still be asking the same question that you have.

[nitshel]

Thanks bobh. My line of thought: Tics began manifesting mid-August so it can’t be school (still summer break) or home (nothing changed). Makes us think it must be environmental - and that narrows it down to an allergen or an infection. He did not have a sore throat or fever so I’m leaning towards allergen. But for the life of me I can’t figure out what that could be - DD is in allergy shots for pollen, grass, weeds and mold too (I think).

Right now he is in a flare and on Ibuprofen and abx (Amox) - with limited effect. At some point we will have to discontinue the Ibuprofen. The last time we have DS steroid (prednisone) he had a huge spike in symptoms so we are leery of that route. Not sure  if anything else exists out there to quickly ramp down inflammation. Thoughts ?

[dasu]

My kids follow a similar path declining in October.  Although this year we have had no summer respite.  It also seems that with the new year they begin to slowly improve.  This doesnt make sense as half life of Igg is 21 days.  Our current theories are reduced levels of vitamin D, increased exposure to sick people, dietary changes (less greens, fresh vegatables) or seasonal  changes to the immune system (https://www.nhs.uk/news/lifestyle-and-exercise/study-finds-seasons-may-affect-immune-system-activity/)

 

 

Edited October 12, 2017 by dasu

[nitshel]

We tried Vit D mega doses last year and a whole bunch of supplements to fighting inflammation. I’ve come to realize that only a massive intervention can end a flare - and am thinking of steroids. prednisone did not work for us so are there any other powerful drugs that can do the trick? The alternative is to chug along for months on end with endless pills and blood draws and sleepless nights. Our DS is a trooper but I can tell his confidence and optimism is running out...

[bobh]

Sorry, I have been out of country and somewhat out of touch.  I agree that the August start rules out school germs.  If you can't find anything else in the environment that starts mid August, it could be that it happening two years in a row at roughly the same time is a co-incidence.  For the odds of that kind of co-incidence, take the difference in start time between last year and this year, and divide that time into the year.  So, for example, if that difference in start time was one month:  one divided by 12 months in a year makes the second time it happened a 1 in 12 chance of being a co-incidence.  I wouldn't ignore that, but that is technically below what most statisticians call statistically significant (which is typically 1 in 20).  If it happens for a 3rd year also within one month of the other 2 years, well that will be (1/12) x (1/12) = 1 in 144 - much more unlikely to be a co-incidence.

This is the classic problem all PANS parents face.  We do tend to believe that there are specific reasons for a particular flare (rejecting the common response from some non-believing doctors "these things just wax and wane" - as if there is no cause and effect).  We have repeatedly linked many of our child's flares to specific illnesses in the house (e.g. his symptoms went through the roof the day after his mom was unusually sick), so my wife and I truly believe there are triggers we can identify.

After a few years (for us), things have morphed: more blurred, less obvious (though we still have some clear causes that we see).  The immune system seems to change after time (including, for us, for the better with the recent start of our son's puberty).  So, it seems theoretically possible for the normal external things we track (sicknesses, environmental triggers) to stay constant, and a flare to happen because of some (complex) change in the body/immune system.  There is still cause and effect, but if puberty and the weather (per dasu's link above) can change the immune system, then our problem of identifying a trigger and some specific action to take against it is so profoundly difficult.  We could double-up our effort to look for strep with our own swab kits (in all sorts of hidden places, not just the throat - I know a mom that swabs boogers), check sinuses carefully, get a tonsillectomy, check everywhere for mold, keep an eye on loose teeth - the list of established triggers is long.

I have to go now - will continue another time, probably tomorrow.

[nitshel]

I agree- it’s so frustrating to find the triggers. We are still dealing with the flare. DS is on Amox-Clav and Ibuprofen. Looking for some way to tamp the inflammation down - herbs and supplements are not working (or work too slowly) 🙁🙁🙁🙁

I sometimes feel like there are just no quick and good options when a flare hits- it’s abx and Ibuprofen or really nothing else- unless you want to try a major intervention like steroids or IVIg or Plasmaphoresis

[bobh]

Yes, I think you are right - abx and ibuprofen (and for some, the first can be slow/trial and error, and for others, the 2nd doesn't even work).

I have heard some stories of parents that were really frustrated when nothing was working,  and in desperation, took their child off everything, and the child improved.  We have had some negative reactions with supplements, so this is one desperate act to consider.  Its a long-shot, especially if the child was put on each supplement one at a time, so you had time to see reactions.  It also doesn't fit well with timing you mention, but on the other hand, if immune systems change (with time or seasons), then maybe a supplement that was ok some time ago is no longer so.  I have heard of this, though I suspect it is also quite rare.  Just another complication that makes it so hard to figure out what is going on.

[PAN-PANDAS-LYME-FAMILY]

Have you had your HVAC system or house checked for mold?  Our son is allergic to some of the common indoor and outdoor household molds.  We are suspicious that this is a trigger for him. 

[nitshel]

Yes we did a pretty comprehensive screening for mold a couple of years ago. Didn’t find anything- including  in the air vents or the bathroom walls (where it tends to get wet)

Really wish we had a real life “Dr. House” who could help make sense of all the factors and permutations.