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