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  1. Hi everyone, I posted on here back in January when my son (2 years old at the time) first began displaying tics - started with pronounced eye blinking, then shortly after included head tilting and face rubbing. He experienced the tics in a pronounced way for about a month and a half. (In that time we had a neurologist referral put in by our pediatrician and only got to see the neurologist last week!) For a few months my son, who is now 2.5, was tic free. However, in the last week or so we have noticed the odd tic here and there - the odd blink, a random head tilt but nothing major. Yesterday was more pronounced and obvious - he was doing pronounced and rapid blinking in succession, a head tilt here and there and some face rubbing (I think). I have been doing a lot of reading on leaky gut and diet (mainly for my own health issues) and wonder about my son in this regard - he has had multiple rounds of antibiotics in his short life, is on a puffer regularly, etc. I would like to get him on probiotics and was wondering if anyone has advice on which strains to ensure are included (and/or to avoid)? Which ones have worked for you? I am hoping it will help his overall health and that it will diminish / eliminate the tics. My son is on lactose free milk (which he drinks a lot of) though he is ok with cheese and yogurt. (I know dairy is bad for a potential leaky gut but that is another issue to tackle for a different day.) I have been reducing his puffer usage as well - not sure if that is a factor at all (thinking it is more diet related or otherwise instead but you never know). I also want to introduce omega 3's...any advice on high quality varieties? I asked the neurologist about giving magnesium and he said there is a risk of my son getting too much so advised against it...same with zinc. Cognitively he seems fine otherwise (if I weren't looking at him I wouldn't think anything was amiss) and he is meeting all his milestones, is happy, loving, talkative, connected, etc. Thanks in advance!
  2. Probiotics

    Hi Caryn, I know this thread is quite old and I'm not sure if you still visit this site or get notifications but wanted to reach out as i just saw this post and how probiotics helped your son. What really struck me was your description of your son.... everything from multiple rounds of antibiotics to "buddha belly" to creamy coloured poop - it sounds so similar to my son. How is your son doing now? Are you still giving probiotics and how are his tics? I was also hoping for some advice from someone (either yourself.or anyone else reading this!) who has "been there". I tried to view the other two threads you noted earlier in the thread but those links are broken so was unable to get your whole story. I was looking up probiotic use as a means to reduce or eliminate tics and found your thread. My 2.5 year old son began displaying tics about 5 months ago and lasted about 1.5 months. He was tic free for a few months but in the last week he was showing the odd tic here and there for the first time (in a few months); yesterday he started doing some pronounced, rapid eye blinking again....and now my worries are coming back and I am determined to try and figure this out. I want to start him on probiotics but am not sure where to start and which strains to look for. Any advice? I found a few old threads that say probiotics can actually make things worse so that has given me a bit of pause. I give him lactose free milk as I think he is sensitive to cow's milk though he seems ok with cheese and yogurt. I would love to scale back his diet but am trying to figure out how to do that with a 2 year old when I can't reaaon with him that it will help him feel better (hopefully). The day before his tics came back we happened to have a neurologist appointment and I asked about supplementing with magnesium and zinc and he said that there is a risk of my son getting too high a magnesium level so advised against it (same with zinc). I will likely cross-post in case tgis thread is too old....hoping for some advice!
  3. For the adults with PANDAS /PANS....

    Thanks! I didn't know you could do your own swabbing!! Do you know where I could look into that? My doctor only did a throat swab even though I have heard it is better to swab pretty much everywhere. How long after an illness would results potentially still come back positive?
  4. For the adults with PANDAS /PANS....

    Hi bobh, My swab came back negative. I did not ask for blood tests, but if I end up going to a Functional MD (which I am considering), I will ask them to run the bloodwork. Thanks for asking!
  5. How did you get diagnosed?....how did you get your doctor to listen and take you seriously (especially since it is labelled "pediatric")? What made you think you had PANDAS / PANS vs. something else - e.g. did your child have it? When I asked my doctor to swab me for strep and I briefly told her why, she said in all the years she has practiced medicine she has never heard of strep presenting this way. I'll give her credit in that she actually did end up doing the swab but if it comes back negative I am pretty sure she won't run the blood tests.
  6. Thank you....I will look into it...always nice to have additional support. With that said, this forum.is a wealth of information and I'm grateful to have found it.
  7. Thank you bobh! I'll look into Dr. Edwards. It's pretty disheartening that there are so few doctors/resources available. (When I read through various posts and threads and hear others say they have a PANDAS friendly doctor, I wonder how they found them!) Thank you for your feedback on SickKids...that is really great feedback. It really sucks overall, though.....in most cases the first place I prefer to take my kids to is SickKids so to hear that that might actually be a worse option is pretty awful.
  8. Child AND parent displaying similar symptoms?

    I also asked this in another thread I started on Lyme tests....has anyone done muscle testing to see if Lyme and/or coinfection (or PANDAS / PANS) are present? If so, how accurate was the muscle testing...was it worth it to try? Do antibodies have to be present for muscle testing results to be accurate?
  9. Child AND parent displaying similar symptoms?

    Thanks Sirena. Will do. Intereting that it can run through families....I totally thought it had to be each person had to be bit by a tick. It sounds like anaplasmosis is most obvious shortly after a tick bite....my daughter's bullseye rash first appeared last August....not sure it's that but something to consider. My daughter has also been clearing her throat a lot like she is trying to clear phlegm. I know this could just be regular cough/cold related but thought it was also a sign of Lyme?
  10. Lyme tests?

    Has anyone tried muscle testing as a preliminary way of trying to see if you have Lyme or coinfection (or PANDAS /PANS) If so, were the muscle test results accurate? Does it matter what the antibody levels are like in a blood test or would you still test weak if you have it regardless of fhe antibodies?
  11. Lyme tests?

    So I spoke with Igenex yesterday afternoon and they recommended the Lyme Immuno Blot Panel 3 - they said it is replacing the Western Blot test and is 90% accurate. For co-infections they suggested Co-infection Panel #3 and said it is rare for the results to be innacurate. Does anyone have any thoughts and/or experience with these tests and your results? After speaking with them I went back to their website and it looked like a different test altogether should be run first (ELISA?)..does anyone know anything about that? Sirena: Any tips on tests to take through Medical Diagnostics Laboratory and their relative accuracy? In terms of timing and if now is a 'good' time to test....my daughter had the bullseye rash first appear last August; lasted less than a day, and again in....I think....January? Also only appeared a short time. Her cough/could came on about a month ago and mine about 3 weeks ago (odd symptoms asdociated with it came on about 2.5 weeks ago). If she (and we) have mycoplasma pneumoniae (which we seem.to have a lot of the symptoms for) does it make any sense to pursue Lyme testing?
  12. Lyme tests?

    Thanks msimon. I was hoping to go the LLMD route first but the one I spoke to this morning said that they are booked until end of June and that I should try and get bloodwork ahead of time and gave me Igenex's website. (The other referrals are for practitioners out of town or require a confirmed diagnosis of Lyme in order to get an appointment. I don't mind going out of town if necessary but without more 'evidence' I was hoping to try local first, if possible.) To be honest, I don't recall having a tick bite.....my daughter had the bullseye rash (aopeared twice) and she and I are both experiencing some similar symptoms (I posted a separate thread on this). I checked the Lyme Disease symptoms list and can identify with at least a third of them (not sure if that is relatively high or low), so figured it would be good to get tested and try and rule in or out LD or other tick-borne illnesses.
  13. Lyme tests?

    Hi all, I've posted a couple of threads recently related to PANDAS/PANS and Lyme. I called a Lyme Literate doctor this morning and they are booked up for a few months and suggested I get Lyme screening through the US (Igenex) while I wait for an appointment. I checked Igenex's website and there are a variety of tests so not sure where to start. My daughter had a bullseye rash last summer that went away the same day; I saw it reappear briefly a few months ago and it disappeared as quickly - not sure if we should test for "tick-borne illness" vs Lyme specifically (especially if we both have some symptoms)? Does anyone have suggestions for which test(s) to have done? I have reached out to Igenex Customer Service and am waiting to hear back....trying to get some info quickly as I have a doctor's appointment tomorrow and would like to be able to review and request tests with my doctor. (I don't think my GP is Lyme literate.) Thanks!
  14. Child AND parent displaying similar symptoms?

    Thank you so very much for all of the information you provided. I am very grateful for all of your time and efforts. I will look into everything you suggested. I have a doctor's appointment booked for myself tomorrow.....I am really hoping she will run some tests and do more in depth screening.
  15. Hello, I know there have been a few threads related to this but am hoping for any updated information... Can anyone recommend a PANDAS / PANS doctor in Ontario, Canada? Also, if as a first step I go to our GP / ped to discuss PANDAS / PANS, what tests do i ask for? I know a strep throat culture can be done but what about swabbing other body parts, swabbing for staph, etc, and what blood tests do I ask for? What do I do if my GP/ped refuses to do the tests? Also, can test results still come back postitive even of the main sickness seems resolved / how long will a test come back positive, regardless of symptoms being present? Thank you in advance!!