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  4. Not to make the rabbit hole any deeper, but pesticide use is a biggie as well. I was reminded yesterday when I bought a pair of shoes and the box contained micro-pak..... Micro-pak is in a lot of consumer products. Home - Micro-Pak (micropakltd.com) It may be better than what they had been spraying down boxes with, but I still wouldn't want it lingering in the house.
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  6. We are partial to Dr Bronners as they are one of the most transparent ones out there, and we buy Sals and Castille soaps in gallon form which last quite a while. Dishwasher tabs: Seventh Generation tabs and dishwashing rinse agent Laundry detergent: Dr Bronners Sals suds, about 2 tbsp in a full load in our HE washer Laundry Drying: wool balls General Cleaning: Dr Bronners Sals suds diluted to about 1tsp:32oz water General Cleaning for Hard water stains: Dr Bronner Sals suds diluted to 1tsp:32oz vinegar Toilet disinfecting: Hydrogen peroxide (yes the standard stuff you can pick up for under a buck per bottle) Hand washing: Dr Bronners Baby Mild Castille soap diluted with water in foaming hand pumps For hard floors, we have a steam mopper which works well without any soaps/surfactants. When they do need a wash, it's literally 1tsp sals in a bucket of warm water.
  7. Hi everyone! I am looking for options to make my home as chemical free as possible for my son who is still struggling with Tics. Does anyone have any suggestions for dishwasher tabs, clothes washing powder, and general cleaning stuff at home. I look forward to hearing from you all! Thanks a ton! Swetha
  8. @mar your msg gives me hope! Thanks for all the inputs and such detailing. 🙏
  9. Dear Chemar, Thanks a ton! I am figuring out many things but very slowly! Your responses and your inputs have been very helpful so far. I am grateful. Also thanks for putting things into perspective for me! Swetha
  10. Hi Swetha, Our experience was that sometimes relaxation or concentration can also bring a tic release. Honestly, if your son is not bothered by the tics while he reads, I would not draw attention to them, and certainly would not stop him reading. I realized early on our journey that frequently I was way more aware of tics than my son was, and drawing attention or trying to get him to stop often just ramped them up! We found using "daylight" light bulbs very helpful indoors, if that may help? Also diffusing a calming essential oil like lavender or jasmine, if he tolerates those. Also, my son needed corrective eyeglasses, and getting those helped a lot with both eye tics and overall. Just some thoughts that may be helpful to you?
  11. Hi everyone, My 10 year old son is doing well with supplements, diet changes, no screens etc., But his Tics are still off the charts while he reads. He loves reading and it's so hard to stop him from reading. Also if I don't stop him I fear he may become cranky and upset bcz of his own tics. Can someone pls give some suggestions what has helped and share the experience with tics triggered while reading. Thanks in advance. Regards, Swetha
  12. My son's dx of MCS some years back (by a respected Allergy MD) certainly answered a lot of questions for us regarding his hypersensitivity! We had already gone all in on being as toxin free as we could, so the dx rather helped us understand more about past reactions, and also added an even greater level of awareness on things he may not have considered. Although no PANDAS dx, we know there was a PANS connection more than likely along with the TS. I do know of others with no clear infection connection whose tics do seem triggered by various chemicals so certainly an interesting area of research I would hope. So many more people seem to be realizing how bad all the chemicals added to everything may be, whether or not one has underlying health issues.
  13. Given the lack of any meaningful research in the field MCS, I feel like anyone with PANS/PANDAS or any tic disorder should really be considering a toxin free lifestyle. And I'm not just talking about organic produce at the grocery store, but really going all in.
  14. @Irene123 I had considered taking up the Dr. Piper Gibson's Program for my son who is 10 years old and has been struggling with Tics since 3 months now. But like you said it did not suit our dietary needs, we are vegetarians and cant start with Animal Protein now suddenly. But I liked some of the suggestions of Dr. Piper Gibson (Like ditch the sugars, Gluten and Dairy). I removed the sugars and tried increasing the protein and it definitely seems to have reduced by 10-15% atleast. I am currently trying Homeopathy and some supplements (Magnesium Citrate, B-Complex, Zinc, Omega3, Vit-C, Calm kid L-Theanine Gummies) I have also tried Bach flower remedies and I think it hasnt helped much. We also see that some days are better and some days are worse, I am unable to see a trend or trigger! In our case Books are a major trigger, he is a lover of books and as soon as he holds his books he starts ticcing. To me it seems like he has made it kind of a habit to start ticcing as soon as he is with books. Sitting in the car was also anothe major Trigger but it is definitely getting better compared to how it was 3 months ago. So yes, one day at a time! I am trying to stay positive. Cheers, Swetha
  15. It is hard to say whether her tics are related to her gut issues or not, the gut issues started two years ago but tics started 6 years ago. We have worked with Dazz of Motor Tic Mastery, who is absolutely wonderful. He showed my daughter some relaxation skills and had several discussions with her about her condition, but she does not want to do anything. The tics don't bother her, so she does not want to put the effort (because it is a lot of effort) to deal with them and try to relax herself. So, we are not moving anywhere with the tics, if she ever wants to deal with them, she will have to relax herself and change her diet, I can't do it for her.
  16. Thank you @mertand @madimifor your kind replies. I know its not going to be a simple and an easy route. But yes one day at a time and I am trying to be positive! Wishing only the best to you guys!
  17. Hi PANDAnaut600 (great name!) Welcome to the forums. I'm sorry to read that you are dealing with so many symptoms. Others may jump in on this. Meanwhile, it would not be surprising for there to be a connection between PANDAS/PANS and MCS symptoms. But both fields are complex, with layers of controversy, and despite major progress with PANDAS/PANS, much uncertainty remains. MCS is "real," yet to my knowledge, an immune link has not been clearly identified through research. What treatment was used for your PANDAS when you were a child? Do you have a physician now who can treat your chemical sensitivities and related symptoms?
  18. Hi All, Does anyone know of any connection between PANS/PANDAS and multiple chemical sensitivity syndrome? I was a PANDAS patient when I was young and over the years I’ve developed fairly strong chemical sensitivities, plus an odd, implacable chronic fatigue. I think it must be connected to PANDAS somehow, but I’m not sure how. I really haven’t had an OCD flare in years, nor have I had a strep infection since I was young. My symptoms include fatigue, sleep issues, hypersensitivity to medicines (at first) and other household chemicals (emerged later), plus difficulty concentrating, some tics/twitches, cardiac symptoms, visual disturbances, and a variety of other things. Any guidance is appreciated.
  19. Dr. Gibson's website seems focused on diet, so that experience isn't surprising to me. Her office doesn't seem to be very focused on environmental or MCS if you wanted to explore non-diet changes. That said, I think you might have to decide if you feel there is or isn't a gut issue. At first you did, but now potentially you feel that there might not because the issues started so early?
  20. Hi JulesLou, Yes, i had a consultation with Dr. Gibson's office, but it does not seem to be the right thing for us. Their main thing is to change your diet to get rid of dairy/gluten and add red meat (which my daughter has never had and does not want to eat). They run stool and saliva tests to determine what you should and should not consume and I guess which supplements you need. I tried to get a clear answer as to what else a person might be asked to do other than change their diet but did not get a clear answer, all I was getting was that it all depends on your test results. I asked to provide examples of what people do based on their test results, but did not get a clear answer. This program is not for kids/people who have issues with food that they won't eat, this program is for those who eat anything and everything and just need expand or limit their diet according to their instructions. Well, if I could do that, I probably would not have a problem with my child since birth essentially, which is when her sensory issues with food began. So, we are not doing anything different right now other than eating Ezekiel flourless bread instead of whole wheat bread. We already don't consume any sweets or artificial colors/flavors for many many years. Dairy is very limited to lactose-free milk that I use to make homemade waffles with no sugar in the mornings. There is not much else I can cut out when my child eats such limited things compared to other children. All this advice from Dr. Gibson and other people on the internet is great for children who eat lots of different things with no issues. My daughter's tics are pretty much the same, some days are slightly better than others, but overall, they are steady, she just turned 14. It's very upsetting to know that her diet is probably the main factor for her tics, but she is not willing to expand it and there is nothing much I can do at this point to change that.
  21. @Irene123did you have a consultation with Dr Piper Gibson, if so what was the outcome? How are things now?
  22. Atex, sadly conventional doctors just don't run the kinds of tests that would give so much more insight! We were so thankful to find an Integrative physician who had all the qualifications as an MD, but with the extra benefit of holistic certification too. Heavy metal testing was one of the first done-whereas the diagnosing neurologist we had initially seen only unleashed a nightmare of haldol on my son!
  23. And just for the record, what do you think the formula for this success was? My DD (16) is functional, but barely. She goes to school about 1 day a week, but maintains honor-roll grades. But she wouldn't go on cloudy days, or if one of her friends were sick. She has really bad sleep issues. She cannot go to sleep on her own until she is exhausted. But once asleep, you cannot wake her up. The only times she goes to school without drama is if she stays up all night. She does great at school that day, but then it so exhausted and she practically passes out at the door. Most of the time, no tics. But somedays they are so bad it breaks my heart. A normally beautiful girl reduced to fetal position rocking, whistling in rhyme to her finger snaps and face slapping and ear pulling. I have her on some fairly functional supplements and one anti-OCD med. But it's hard to get her to take them consistently. Her defiance can get intense, so we offer and recommended. New drugs are hopeless. Thanks
  24. Thank you, CarolynN. It's some 3 years after your wrote this, but it's hitting the right spots for me. My gut has been nagging me that my daughter (with PANDAS) OCD gets worse when she missing her Claritin. She is on two 10mg doses a day. Her allergies are so bad. I buy Puffs Plus but the large 8 packs every few weeks. I've never seen anyone go through that a many tissues. I hate that she is on two Claritin a day (doctors orders) and she has been doing it for nearly 10 years. I don't know if you have heard of the MTHFR genes, but she had both mutations. We try to limit the about Folic Acid she takes, but it is tough. Everything has it.
  25. If anyone is following the recent end of 2023 news about lead contamination in cinnamon that was discovered in kids fruit pouches, it led me down a rabbit hole of looking into heavy metal contamination of spices. Who knew that certain producers add lead to spices to increase their weight. That said, I found an interesting article about a family who dealt with lead contamination from paint in which the kids were diagnosed with Tourette's Mom with lead-poisoned children says Flint crisis 'hits close to home' - mlive.com This begs the question why wouldn't a neurologist run blood tests for this out of normal practice? Our neurologist didn't even consider blood testing for heavy metals.
  26. Most of the times it's happening yes. But his full body moving/jerking, shoulder shrugs etc have all calmed down. Now it's mostly this stomach tic with strange breathing and some head nodding and facial tics. I will be travelling over the weekend. Right now I am still in Austria.
  27. Is this happening basically all the time, Swetha? (Yes, we have heard of all these types of tics.) I'm sure it must be very distressing for you. I'm so sorry to read about it. Are you in India? I'm sending an email note to you. Also, to jump back -- no, meat is not required to heal a tic disorder. As a general concept, a balanced vegetarian diet is fine.
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