Tic Explosion: throat clearing, and more

[thenmama]

xx

Edited March 28, 2013 by thenmama

[LNN]

I can only offer my experiences - so take whatever is helpful, disregard the rest. My son was once a huge ticcer (with clear strep association and high CamK 180). We could get remission with abx for awhile, then prednisone tapers, then pex. But none of it gave us more than a 2 month remission. IVIG had horrible consequences with no upside whatsoever. We then found lyme/bartonella and saw some really nice improvements. This time we got 4 months recovery/remission - then hit that wall again. We looked into mold, found and corrected some issues, but the holy grail was still elusive.

 

Then we turned over the KPU/pyroluria stone and found DS was zinc/B6 deficient. Saw some really cool -and lasting - improvements. Since then, we've gone on the methylation trail and are adding other things (folate, magnesium etc). And the improvements continue. Now, DS remains on abx and we've been holding lyme at bay while we've addressed this other stuff. That may need to be re-looked at at some point.

 

None of this is to suggest "oh, your DS has x. Or he has Z." But IMO, if you are doing the Pandas treatments and not seeing the improvements you feel you should be, then I'd look for additional triggers. Maybe infection, maybe environmental toxins, maybe nutritional such as pyroluria/methylation issues. It's possible there isn't ONE cause but several for your DS.

 

I've been in your shoes - watching the tic explosion is heart breaking because it's so clear that something is seriously wrong with the brain (tho having lived with both, I'd still take tics over OCD any day). But for us, it was multiple issues, building on each other. The best thing about the lyme dx wasn't that it suddenly became a clear path to recovery. It was that it put us in the hands of a doctor who "specializes" in looking at the whole body instead of one part or one system. He didn't give us crazy looks when we wanted to test for one thing or another. He helped us explore things that have really helped far beyond getting rid of a particular infection. I know people on this forum have skepticism about LLMDs and that you'll automatically get a lyme dx. In our case, that hasn't been true. My DS started there but has gone beyond that. He is finally holding on to his gains.

 

Keep digging. You will find the keys that are unique to your son and get - and keep him well. Believe that.

[thenmama]

xx

Edited March 28, 2013 by thenmama

[LNN]

Dr Ritchie Shoemaker is "the" mold guy - has done research published in per-reviewed journals, has years of clinical experience treating patients with mold-related illnesses. His web site gives a good overview and the tests he feels are relevant are here:

http://www.survivingmold.com/diagnosis/lab-tests

 

But the whole site is worth reading.

Another good overview is here:

http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html

 

Shoemaker has a good book called Surviving Mold and a newer one called Mold Warriors. He talks a lot about chronic inflammation.

He has opinions on which labs do the best job of providing reliable results - particularly C3a and c4a. if you get to that point, ask on the lyme board. Since it hasn't been our big focus, I'm not as up on the details as other members.

 

I initially scoffed at mold. I have asthma and allergies and my health drastically improved when we moved into our current house 10 yrs ago. But... DS had some lab results that said he would have a problem with mold if there was any, so I went hunting. I risked divorce by asking DH to spend the hottest day in July taking 6 cargo van loads of basement junk to the dump - mildewed boxes, clutter - then cleaned black mold off our water tanks. I vac'd the empty basement with the wet dry vac. Then ran around squirting things with peroxide. Peroxide kills mold. Anything that bubbled was cleaned. So it was very cathartic (after DH started speaking to me again). But no big changes in health. Then in Sept, when the windows closed and we started to stay indoors, I became hyper-itchy and got hives every day unless I took a Zyrtec. At the suggestion of a lyme board member, I took my washer apart - and found 12 years of mold growing between the metal drum your clothes go into and the plastic outer drum that surrounds the metal drum. Grooosssss!. Two bottles of peroxide, rubber gloves, face mask...and a day later - no more asthma, no hives, no more zyrtec. There's a possibly suspect carpet in one room that will be replaced by wood flooring next week. It's basically been a slow hunt. Over time, I've gone around with my squirt bottle of peroxide, and looked in places water or condensation might be - under the sink, bathrooms, sink drains that don't get used every day, any wall where there's been a leak, the attic... It hasn't been "the" thing for us, despite my hives. But it does feel good knowing I'm removing things that are adding fuel to the fire. And it's actually helping me more than DS.

 

I don't want to turn the whole thread into mold. I also think the other stuff has been equally critical. But don't want to run on at the mouth about it. There are KPU and methylation threads you can search or PM me if you have any interest in that stuff.

[thenmama]

xx

Edited March 28, 2013 by thenmama

[thenmama]

xx

Edited March 28, 2013 by thenmama

[trggirl]

Is it possible the Orapred is making the tics worse? Which came first, the increase in symptoms or the start of the Orapred?

[thenmama]

xx

Edited March 28, 2013 by thenmama

[trggirl]

I know for us, cutting out the dairy and supplementing magnesium helps. But it takes awhile and it is a slow decrease. Sometimes I don't even notice but when I think back, I realize she is doing better. I also think DMAE might possibly be helping us but I say that with hesitation because I am not positive yet. I would definitely check with your doc before using any of it though because I don't know what interactions they might have with what your son is already on. So sorry. Tic explosions are not fun.

[bws]

I am wondering about this too.

 

DD12 is doing much better. She had a lots of symptoms on the Pandas list but no facial ticcing. She did have a vocal tic at one point. We gave her several weeks of zithromax, and now she is taking an excellent supplement called Liver Balance (www.pbiv.com) which is helping her alot. And she just started with a facial tic, like squashing her eyes and nose together. As long as the anxiety and ocd are getting better I am happy, but it does bother me. Does it make sense that she would be getting better while starting to tic? There is strep in the house......

[thenmama]

xx

Edited March 28, 2013 by thenmama