Swetha

That's exactly how we got into this. No signs of sickness 1 year before the big onset. But that's what is happening, the dysregulated immune system- instead of sickness is showing signs of tics/ocds/behaviours. I am sure you will figure things out. Just hold on to the faith in the bodies - which can heal themselves and keep doing what you can.

Hi Tiara, Those little bodies need time to recover from whatever they are struggling. Healing is not linear and it 2 steps forward and 1 step back. Sometimes more steps back (imho). This is going to be a long haul process for many, but I do hope that you see quick results. But unfortunately there are way too many causes which might be causing our children to flare up. For us it's infections - if he gets a slight cold/cough/swollen adenoids/swollen tonsills then his Tics increase. Even after doing everything what you are doing, we are also seeing setbacks and very rarely 100% free from tics. It's hard but just keep at it, I am sure you will figure out more things and become better at helping him. May be get his blood work done and work with a functional medicine doctor. Read this book "A light in the dark - Jill Crista" on Pans/Pandas. Whether he really is P/P or not, you can help him with the recommendations in that book. Take care, Swetha

I have seen reduction of tics, then a huge flare with a Strep infection. They again went away completely for sometime and kept coming back but at a much lesser intensity (due to diet changes/herbs/supplements). In my Son's case, I believe there is an underlying chronic infection which is the cause of his Tics. His ASO titers were moderately high when we got it check last 3 times, but I don't want to take the Antibiotic route, if I can manage with herbs and nutraceuticals. But this will be a long haul and we need to have no expectations, the healing will happen - but won't be linear. It's going to take sometime to get rid of them all. Atleast that's what i feel , based on my experience till now. But every kid is different and you are your child's best advocate. So keep going.

@tiaratoledo I have stopped buying any packaged food with more than 3-4 ingredients in it. Also, has to be easy to understand and easy to read ingredients in it. We are also vegetarians, seems like vegetarians have problems with getting enough vit B12. May be you can try adding that. I have also read many studies about 'Keto diets help kids with tics'. I am still finding it very hard to bring meat into his diet due to my own (moral) reasons. I have started adding eggs, initially he had issues with eggs as well, but slowly he is able to take it. In my opinion, any artificial colours are bad. I was giving my son certain fish oil capsules which were made of gelatin and has some yellow in it, which increased his vocal tics. As we removed it, the vocal tics kind of calmed down. Colours are the worst enemies for our children. You got to get rid of any/all products with colours in it - handwash, soap, dishwashing tabs, clothes washing liquid, perfumes, air fresheners at home/car and last bit not the least food colours! You got to become a detective now! 🙃 Good luck with that! Swetha

@Chemar your posts are always helpful and makes parents like me feel hopeful even in hopeless situations. 🙏 Have learnt so much just through this forum and your posts.

Love you saying this @Atex Thanks for spreading Hope.

Its very natural to feel overwhelmed when there is such little information available to us, mothers! I can feel you. I have been going through this since an year now and yes things do get better and there IS hope! Like how every DIS-ease has a root cause, tics too have some reason why they are happening. Every child is different and the reasons why it's happening will be different. But whatever the cause may be, it's just that their brains are inflamed and that needs to be taken care of. I suggest you to add certain healthy fats to his diet, like coconut, flax and fish oils. Magnesium glycinate helps as well. I would totally recommend reading Sheila's book and follow the gluten and dairy free diet for a minimum of 4 weeks to see the difference. We saw a huge difference there, although we have more work to put in. I understand your child is too young and might be difficult to handle this, but you have to see how to build his confidence now. Also, have you looked into Pans/Pandas? If the tics onset has been very sudden/abrupt,then I would recommend you to look into it. Look into it, even if it's not very sudden. Try dosing Ibuprofen and see if the tics reduce and thats one way to say its the brain inflammation - pans/pandas (may be). You aren't alone and you will keep digging and finding more. More power to you. Take care, Swetha

Hi Tiara, I had somewhat similar experience, just that it all started when he was around 10 years old. You need to understand that there is a lot going on under the hood for our kids with Tics. The chlorine in the pools is one of the biggest factors for us, it takes weeks/months to bring him back to normal after he is exposed to Chlorine in the pools. Looks like Chlorine deplets the Glutathione in the body, which is most important thing for detoxing. At the same time, if he is also affected with some bug(infection) then this burdens the body even more. Its not just one thing which brings our children to this tipping point , its always a host of issues. All in all, the immune system is dysregulated and is finding it hard to regulate itself. My recommendations would be: 1) Start with Magnesium Glycinate + Epsom salt baths (atleast foot bath) 2) Add B6 and Zinc 3) If possible add L-Glutathione, which will help him get rid of the toxins built in his body. 4) Try the Gluten and Dairy free diet, which can help in reducing the overall inflammation (My son is not sensitive to Gluten/Dairy on tests, but he reacts to it when he gets it) 5) Try finding some functional medicine/environmental medicine doctor instead of running to the neurologists (you wil save yourself a lot of disappointment and heartaches) 6) try not to forget to breathe! Take care of yourself and remember he needs a very strong and a regulated mother - who wont give up and will keep going. Take care. Swetha

I recommend you to read the books written by Dr.Jill Crista on "PANS and Pandas" and "Break the mold". I feel there is so much help out there in these books.

Thank you for your response @KSandy. I have started doing that and have seen some improvement. Also I read in one of the articles, that the glutathione can cause bad breath. But it is definitely getting better.

Hi everyone! A quick background: It all started almost an year ago when his Tics became too much and we saw some anger and mood issues as well. He was given a diagnosis of Tourette Syndrome. We were trying to deal with Tics with supplements and Diet changes but suddenly after a Strep Throat we were back to where we were an year ago. This got us thinking if we could be dealing with Pandas/Pans. Unfortunately we have no Pandas doctors here in Austria. I am trying to get some help from my general physician with the tests etc., In the mean time, thought I should check in this forum if anyone experienced similar symptoms like us: We are currently dealing mainly with Very strange Postures while sitting and reading books (This had got better till Strep hit us again). Strange ways of breathing - as if he is struggling to gasp a breath and then pushes out the air forcibly (something like that, cant really put it in the words i know!) Slurred speech, which comes and goes every now and then. We noticed that it just gets worse in the evening and before sleep is at its worse. Apart from all these he has Tics like nose scrunching and facial tics, shoulder shrugs, sudden jerking of legs and the whole lower body etc.. I know that this Forum has most knowlegeable and experienced parents and would grately appreciate any responses. Thanks ín advance and happy healing you all! 💓 Swetha

@MaryAW Thank you very much for your kind response. I haven't found a Pandas/Pans doctor yet. I am on a hunt for the same here in Austria. My Paediatrician doesnt seem to believe in Pandas. I have been using Magnesium Citrate and will try switching to Glycinate from Metabolic Maintenance. Also which form of B12 do you recommend? I am giving B12(Methylcobalamin & Adenosylocobalmin) from the brand KAL which I ordered on iHerb. It would be of great help if you can give me some of your supplement recommendations. I am dealing mainly with Tics and some strange ways of walking,sitting,posture issues (while reading in particular). I also see that his speech becomes slurred and his breathing patterns are also affected. Thanks in advance and every response is truly appreciated 🙏 Swetha

Hello everyone, My son has been having a very bad - fish like smell coming from his mouth. He follows a very good oral hygiene and so that can't be the case. This smelly mouth started a month ago since he is having loose teeth. 4 of his pre-molars were wobbly and he lost one of them last week and the smell in his mouth is extreme and unbearable. Did anyone have similar experiences or have heard of something in Pans/Pandas children. I don't want to google this and freak out too much! Thanks in advance. Swetha

Hi everyone, Does anyone here have the experience with Immunotherapy? My paediatrician wants to try putting my Son on Broncho-Vaxom, which is basically lyophilized bacterial extract, which helps in reducing the recurrent ENT infections. Is there anyone who knows how this might affect kids , especially those with Pandas traits. Any help with this is greatly appreciated. Thanks in advance. Swetha

I have heard that oregano oil, grape seed extract, Neem extract, cat's claw can be some of the best and natural ways to get rid of infections of any kind. Also the coconut oil and garlic! Sincerely hope you get to see some relief.

Thank you so much for your response, Bws1565! I have given B12 a shot, but recently his blood work showed too much B12 and my husband was too worried about giving too much B12. I am not sure if the blood can show high levels and the child may still be deficit! But I do agree with your observation that B12 did make a huge difference to my son. We are going down slope again since I removed B12! I keep coming back to one question which is troubling me right now- all his symptoms went away when he was on penicillin for 7 days? (But when he was put on Cefachlor, it didn't have the same effect.) His tonsills are swollen.

By the way we are dealing with Tics, some crazy Tics while reading books(he is an amazing reader). Some amount of anxiety with his health and mild OCDs. Frequent urination and bowel movements too. Sometimes he complains of stomach aches and joint pains. All this after he is on a very strict GF,DF and egg free diet. He is a vegan now and eats only organic whole foods and every meal is cooked at home.

Hi Sandy50, You are not alone. I am having a similar situation where I am unable to understand if its PANDAS. We saw severe exacerbated Tics, anxiety and stuckness in our 10 year old son 8 months ago. And it was given a "tourette syndrome" label by the neurologist. I followed this forum and with help of some experienced people on this forum made some changes to the diet and saw some major changes. We were doing pretty decent and suddenly he had a terrible Strep throat which we had to treat with antibiotics and just after 2 days of antibiotics all his symptoms were gone for next 7 days. (Till his antibiotics ended). The very next day his symptoms came back. This left me thinking, we might be dealing with PANDAS! His tonsills are swollen and our paediatrician doesn't believe in PANDAS. I am now trying to figure out ways of getting the tests done for the Strep fitters etc , which is all very new to me. I wish the main stream doctors were more understanding/Open towards these kind of issues. I am holding on to the hope that things will get clear soon and we will find answers soon. With the help of this forum ofcourse. Good luck, Swetha

Hello everyone, I got the GI map test results of my son and it shows that he has high levels of Certain opportunistic bacteria in his gut. Like the Streptococcus spp, enterococuss Faecium, Enterobacter spp. And Pravotella spp. I understood that he has a leaky gut, but does this also mean I should look into PANS/Pandas? I am super confused. Kindly help with whatever knowledge and infos you have. May be @Chemar @Atexor any other member has any inputs for me. Thanks in advance. Swetha

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

@mar your msg gives me hope! Thanks for all the inputs and such detailing. 🙏

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

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

@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

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!