Jonal5680e

Hi Ronime, PANDAS is linked to strep but PANS is other types of infection aswell. Def look into this as I feel strongly that this is what is happening to my son. Here’s a link for the UK pandas organisation but I’m sure there is a US one. I’ve also emailed them directly for info and they are super super helpful: https://www.panspandasuk.org/resources God bless and keep me updated on everything. You aren’t alone in this!

Hi i posted a while back re my little boy. I’m looking into PANDAS for him. He went 3 months without any tics and then overnight had panic attacks and onslaught of multiple tics. He also had what looked like tonsillitis and so had him tested for Step which cane back positive. We are now being referred for a second opinion as both times he has come out with tics he has had strep. I also find that his behaviour totally seems to change. He is usually a very happy and laid back child. But he changes to being very moody and extremely easily upset and emotional with OCD type thoughts. My son also doesn’t know anything is going on but I feel like I’m living in a nightmare. I would say to def get your little ones checked for PANDAS aswell. All of the stuff I’ve read and looked into is so heavily connected to immune systems and sensitivities. It’s a mine field and im just so thankful that we all have this site to talk and raise things. Hoping and praying that we all find answers or at least are able to find the triggers for our little ones.

Hi. Thank you soooo much for replying to this. With dans tics I’ve noticed he does it when really tired and actually when he’s eating just like your son! Since I posted that I’ve had an awful time. Full abrupt onset of tics again yesterday! He’s been doing well for months although I’ve seen the odd ones like you say. He sounded like he had a sore throat and I checked and he has tonsillitis! I took him straight to doctors and the tics just came thick and fast! Have you ever considered PANDAS? I’m seriously looking into this now as my son did test positive for strep but the paediatrician didn’t do anything about it back in September and the tics did wane. Now he’s got a throat infection again and sudden onset of tics and huge anxiety. He had full on panic attack yesterday and today. Just so distressing to see and more importantly distressing for him! I’m waiting for the throat swab to come back re strep from yesterday’s test but if it does test positive then I’m really thinking it could be PANDAS. I have an autoimmune disorder myself so it’s def something to consider. So hard to just try be ‘normal’ and calm for them when there’s so much worry. Suppose we have to just take each day at a time and investigate every avenue. We have CBIT over here to. That gives me some comfort that there are things we can try and hope it does for you to. Our cases sound really similar. It was literally like reading my own thoughts reading those posts. Keep me updated of any progress or new findings and I’ll do the same for you! Take care and hope everything works out for you. Your in my prayers. Al

Hi, I found this thread yesterday and so wish i’d seen it months ago. I was going through this at exactly the same time as you guys and it’s like reading my own thoughts and fears about it all. I’m interested to know how you are getting along now and if there’s been any improvement? my son is 6 years old and started with eye blinking at end of reception. We live in England. A week before he was due to start 1 year at school he started doing this funny thing like a quick breath in. It was only very subtle but it wasn’t ‘normal’ then came the neck stretching and facial grimacing which was repetitive. It was absolutely heartbreaking to see his beautiful little face contorting like that. I asked him what he was thinking about when I would see it was getting worse and he said he didn’t want to be a big boy and that he was worried about going back to school. I also had an operation coming up at the end of September and he seemed to think that he had caused my injury. Which of course he hadn’t. We bought Sheila’s book from Amazon on natural remedies for tics and Tourette’s and I must have read it in about 2 days. I’ve done so much research and constantly googling things!! Driving myself mad half the time but there a lot of information out there. It’s the not knowing what this is or is not and the thought of him being bullied that really scares me. Whenever I read things it seems that in America you have a lot of integrated physicians etc but over here we just don’t seem to or at least I can’t find any. It’s very much going to the paediatrician and him saying I have to wait and see what happens! That’s not good enough for a mother though! I should add that we started him on fish oils, magnesium supplement and good multivitamin. We also stripped back the iPad and iphone time and massively reduced sugar in the first few weeks back in last year end of August beginning of sept. After his first week back of school his tics has reduced. By the end of sept it was just the flight breathing one left really with an odd next stretch in there. And after I had my op sept 28th the following week they seemed to stop. It’s now early Feb and I do see one tic when he’s tired but other than that it seems to be waning. It’s good but still it’s there and could resurface again if he’s stressed as I think this is the major trigger for him. He’s also quite anxious child and im worried he might have adhd. We aren’t licensed for some of the better medications that you have in America either. Not that that would ever be my first port of call. Dan is such a creative and funny little beauty and I would never want to suppress his nature. But it’s still at back of my mind as a failsafe if diet/environmental changes don’t work. Anyway. That’s my story so far. So pleased to have found somewhere that there’s like minded people going through the same thing. The medical profession over here just don’t seem to know or understand it at all!! I live in north England. Does anyone know if any specialists here? many thanks Al