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Hello everyone, my 21-year-old brother was diagnosed with PANDAS shortly before his 18th birthday, and he also has a past history of Lyme disease. He has been in and out of the hospital and psych wards over the past several years and often unable to care for himself and in a psychotic state. I know that there is toxic mold in the home where he has lived his entire life and recently he went to stay with his older sister for a week and saw some small improvements (was able to eat, carry on some conversation, etc.) but when he returned to his home with my parents and two other brothers he grew intensely worse and ended up hospitalized again. My family has not seen any connection between mold and his condition and just attribute it all to the inflammation they are told is in his brain. The only thing he has received in the past that has given any help were the IVIG infusions but they never lasted and this past time, there has yet to be much improvement seen from them. I am putting out a call for help to any parents out there who may have some helpful advice, experience, and especially scientific evidence on the connection between mold and PANDAS, especially because I am 99.9% confident that my brother is one of the 25% who is unable to detox the mycotoxins from mold. I had to leave that house because of my own chronic illness and the mold keeping me from stabilizing or improving. Thank you so much for any help you can offer. Grateful!
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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.
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For anyone looking into mold illness, I just came across a paper written by an integrative doctor in Park Ridge, IL. It's completely based on Dr. Ritchie Shoemaker's work, but it's the most clear and concise explanation of the diagnosis and treatment of mold illness I've ever read. http://www.survivingmold.com/docs/Berndtson_essay_2_CIRS.pdf
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The Chronic Lyme Disease Summit http://chroniclymediseasesummit.com/ is a free online conference starting today. There are many great speakers and topics lined up, and I encourage anyone still looking for answers, even if you've ruled out Lyme or don't think it's a possibility, to check it out. Much of it will be relevant to PANDAS/PANS, whether or not Lyme is involved. Speakers include Dr. Horowitz, Lee Cowden, Scott Forsgren (Better Health Guy), Kenneth Stoller, and Joseph Mercola, just to name a few. Topics include mitochondrial dysfunction, brain conditions, stress and emotional trauma, treating anxiety and panic with tryptophan and GABA, energy medicine, Chinese medicine, trigeminal neuralgia, IV vitamin C, rife, infrared technology, sugar, mold, nutrition and detox, gut microbiome, biofilms, GAPS diet, ketogenic diet, grains = inflammation, cancer, heavy metals and more. They have several speakers each day and you have 24 hours to watch their talks for free.
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Our doctor has put my son on a gluten-free diet as part of the Shoemaker protocol for treating mold toxicity. Five weeks in, I've come to realize that he's not sticking to the diet whenever he's out with friends. Every time I catch him, he promises he'll stick to it moving forward, but its not happening. I've given him good food that he likes, including spending a lot on sushi for lunch occasionally, going to the GF bakery for sandwiches, but this hasn't been enough. He's a kid who definitely has food addictions (sugar/carbs) and who resists change or doing anything uncomfortable unless he understands WHY he has to do it, but so far I haven't found much to help me explain it to him in a way he can understand. He's 15, but probably has the maturity of a 13-year-old. Has anyone been through this and know of some good online resources and/or books, articles that might help us? I think even a picture book explaining what gluten can do to the body would be helpful. Any help would be appreciated - I'm stuck between the doctor who says we "have to" and the teen who won't! -
This has nothing to do with Pandas/Pans directly, but I know that many of our kiddos have mold sensitivity issues, so I had to share. One of the chambers in ur Select Comfort bed has been deflating and losing too much air for a long time. I finally got around to replacing the air chamber today, and I took the mattress apart to do it, and I could NOT BELIEVE what I found-- the entire bottom of the eggshell foam inside the mattress was full of mold. I am so disgusted! There was no indication of any issues from looking at the outside if the mattress, and I keep not one, but TWO mattress covers on my bed. Apparently, Select Comfort beds (mostly made before 2004/2005) were made with foam that is not anti microbial. This was a $1200 mattress! We have another Select Comfort mattress (our daughter's) and we checked it, and it's fine- hers is a few years newer than ours. If you own a Select Comfort mattress, take it apart and CHECK FOR MOLD!!! My dd and I (she sleeps with me) have been sleeping on mold all this time, and had NO IDEA!!! I looked it up, and apparently there was a class action suit against SC for this issue!
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My dd did the VCS eye test on Shoemaker's site. Here's the weird thing: One eye passed and one eye failed! Does anyone have a clue what that could mean?
