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I've only posted a couple of times over the last year or so, so for a bit of background DD age 10 was diagnosed PANDAS by Dr. L (in MD) in the spring of 2013. In the fall of 2013 she had her tonsils out and in November 2013 continuing through today, she's been under Lyme + coinfections treatment (pulsed antibiotics). DD's symptons started literally overnight in March of 2012 - numerous motor tics, hyperactivity, urinary frequency, inability to sleep, anxiety and moodiness.


It wasn't until the fall of 2013 that it was pieced together that a tic bite that she got in the fall of 2011 on her abdomen while at a b-day party, which we took her to the pediatrician for about two months after she got bit when she got a rash near the tic bite and she hadn't been feeling well, could be related to her symptoms. Her lyme testing at that time only showed 2 bands of the 5 necessary to be, I guess, positive according to the CDC's standards, so our pediatrician did not prescribe antibiotics.


Fast forward to today, DD is doing much, much better. I would say about 75-80% better. Some residual motor tics which flare more at certain times than others, and still some emotional issues.


I'm writing because I know many of you have dealt with finding the pieces of the puzzle that may be left in order to get your kiddo to 100%. An interesting observation: both during the summer of 2013 and the summer of 2014, we traveled as a family to a friend's beach house for a visit and stayed several days. During the summer of 2013, while we were there, DD's motor tics and hyperactivity were through the roof - like we had never seen them. And then when we went a a couple of weeks ago, her tics were really bad again - but the other symptoms were ok. Once she got back home after her visit this time, tics almost gone again.


The beach house we visited is lovely but smells very, very musty. You can smell it right when you walk in. I know it has had water damage in the past, which they have taken steps to fix - but you've got to wonder. I know nothing about mold and how it relates to PANDAS and lyme, but it sure seems odd that DD's tics go crazy when she's in this particular house - especially that it happened again this year when she's otherwise doing so well.


Thoughts? If there is a sensitivity/allergy, can we treat this somehow? We want to get her to 100%!


Many thanks for educating me!





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Avoidance is best way to treat mold sensitivity. You could also try toxin binders before and during exposure. But something to consider is that if your child's reaction is that severe when exposed to this house, they may possibly already be "primed". In other words, maybe there is a chronic exposure happening at home or in school that is keeping them "chronically inflamed" toa certain extent.

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Musty smell is always mold. I was told that by the company that does environmental testing for mold.


Her reaction suggests she is sensitive to mold toxins. I would definitely have her do the on-line VCS for $15 and Shoemaker Panel. Then maybe Real Time Labs.

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This is a good article on explaining the biotoxin pathway and why mold toxins cause more trouble for some than others http://www.survivingmold.com/diagnosis/the-biotoxin-pathway and this one http://betterhealthguy.com/images/stories/PDF/Townsend_Mold_Mycotoxins_Overlooked_July_2014.pdf


If your child is sensitive to mold toxins and has trouble clearing the toxins, then the focus is on both removing the source of the mold AND removing the toxins from the body. Apparently, mold toxins can stay in some bodies even after the source is gone and will circulate around until you help it clear. To do that, I've come across three strategies.


One is to take things that help the liver work more effectively - supplements like milk thistle can help upregulate certain liver enzymes/pathways provided you aren't allergic to ragweed (milk thistle is in the ragweed family) or aren't sensitive to supplements high is sulfur. Water and lots of fluids also help detox via the kidneys.


The second one is to ingest binders - things that bind to toxins within the intestines and are excreted rather than letting those toxins get reabsorbed thru a leaky gut back into the blood stream. Binders include activated charcoal (1-5 capsules/day taken away from all medications and supplements), chlorella (10 capsules/3 times per day away from meds), psyllium husk, and cholestyramine - a cholesterol-lowering drug that binds to bile during digestion and also binds to toxins in the process. The first 3 are OTC and cholestyramine is a prescription.


Third, you can take supplements that increase the body's production of glutathione - a major antioxidant. These include alpha lipoic acid, vitamin C and n-acetylcysteine (NAC). But if you are sulfur-intolerant, alpha lipoic acid and NAC should be avoided (sulfur intolerance can be determined thru experience or by genetic testing thru 23andMe).


Finally, in addition to detox, you can also focus on reducing inflammation. Motrin 3x/day, resveratrol (an OTC supplement), curcumin (great for some kids, not tolerated by others) and some other herbs. Epsom salt baths help some people as well. And of course, time. Support the body, remove the insult, and give the body time to heal.

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