Does Mold removal improve PANS symptoms?

[Luna]

My Question-

can anyone who has removed mold from their home or moved to a mold free environment respond to tell me what the affect was on your PANS child, if any?

 

We recently learned we have a very bad mold problem in our home. Our PANS daughter was diagnosed 2 years ago, but we moved into the moldy house 4 years ago, and don't recall any symptoms or problems associated with moving in here 4 years ago. No one in the home has the classic symptoms of "mold illness", only PANS.

 

Im conflicted because on the one hand I have our PANS doc saying the mold in our environment is fine and moving would be useless and have no affect on PANS symptoms. On the other hand Ive read it can cause a flare.

 

Id be forever grateful to hear from anyone who has removed mold. What happened to the PANS symptoms?

 

thank you in advance for any time spent reading or responding to this.

 

 

 

[LNN]

I can't imagine anyone who understands mold saying that it wouldn't impair a child who has an autoimmune disease. That's nuts. My daughter struggled with mold exposure in her classroom and it definitely contributed to her Pans symptoms. We ended up home schooling for one year until she was able to matriculate into the Jr High School (different building).

 

I would recommend two things - run an HLA-DR blood test to see if your daughter is among the 25% of people who can't rid their bodies of the toxins that molds throw off. If hr HLA-DR gene results put her into this category, you need to get her out of that environment, regardless of Pandas. A great place to read up on the subject is Dr Shoemaker's first book, Surviving Mold. And run some of the inflammation tests listed on his website http://www.survivingmold.com/diagnosis/lab-tests

especially HLA-DR, C4A and MSH

 

The second thing you can do is move your daughter out of the house for a few weeks - a hotel, a relative's house - and thoroughly wash everything she brings out of the house with her (clothes, stuffed animals, paper goods, etc). Then see if her health or symptoms improve.

 

Knowing what I know now, I consider mold to be as much a threat to my daughter's mental and physical health as strep or lyme or any other illness.

[bobh]

I believe mold to be a trigger, but don't have the experience of having pervasive mold and moving away from it. I only have one experience where we were emptying a potted plant that had gotten very moldy. We got it outside relatively quickly, but our PANS son had a particularly bad evening that day. Maybe co-incidence, maybe not.

 

Mold is not infectious, so I don't think you will find it listed on the PPN network as a cause. Some doctors will say that if mold is causing you a problem, you have a different problem, its not part of PANS or PANDAS. But there are (PANS-aware) doctors that say the opposite. I personally believe the latter.

 

As for moving in 4 years ago, it could very well be the case that it took time for the PANS to develop, and also that a PANS child becomes particularly sensitive. Strep is all around, but most don't get the first full blown flare until multiple or chronic exposure.

 

I think llm's idea to have the child away from the home temporarily is a great test. Make sure she is not moving into a house where someone is sick, or where there are any other known triggers for your child. It is also important to note if the symptoms get worse moving back in again - because (with all the waxing and waning of symptoms that go on), it is too easy for any one-time decrease in symptoms to be a co-incidence.

[MaryAW]

My daughter flares from mold. This is the only thing left that triggers her PANS symptoms. For her it is her best friend's basement and the room at choir. Also, during allergy season when mold spores are high. She was ticcing badly last August from the outdoor mold spores and we went on a trip to the California coast. Her tic immediately stopped out there, and then it started back up when we returned. We are going to try allergy shots - going to Dr. Bouboulis this week to start. I would absolutely remove the mold. Just make sure you really have it done well.