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ad_ccl

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  1. Hi Fixit, We started the antibiotic route 5.5 years ago - I took any research I could find about antibiotics. They worked well with my son - he would do a 10 day course, symptoms would decrease then we would stop the antibiotics and symptoms would all come back. Paed was not comfortable with long term use unless I got the ok from ID clinic. They gave the ok based on how well he was doing when on them and how he would decline when off them. Neurologist agreed that antibiotics were the route to go based on how well he was doing. She saw no need for other kinds of meds. They are recomm
  2. I believe it was Streptococcus thermophilus. Not 100% sure - as cannot remember the brand we used to use so I was not able to google an ingredient list - it was a few years ago. Whatever it was it had the word strep in it.
  3. We just use a plain old acidophilus now. We used to use a probiotic that did have the strep ingredient in it - we did not realize it until later - Ronna had told me her son was not doing great on the probiotics so we tried taking our son off them and he leveled out even more - so when we added it back in we just use the acidophilus to be safe. I keep meaning to go and look for a good probiotic but he has been doing ok with what he has. We ran out a few weeks ago so he has been without - the other day I gave him one of the chewable one's my younger two take. For dosage - yes we give 500mg
  4. Hi Angela, No - when tics return for short periods of time I don't see it as the antibiotic not working - we still had ups and downs for many years - there were always other factors - we found anything that bothered his immune system could cause a tic to emerge, be it being overtired, coming down with a cold, raining (molds), seasonal allergies, and most recently we find growth spurts. I think the antibiotics just help keep things leveled out a bit - the immuno modulating effect of the azith I think is key - I used to always talk about the bucket theory. Their immune system is like a bu
  5. Hi Trg, He does not have attention problems now - but when he was first sick he did - not ADHD but just not as able to focus - when he was sick his handwriting would start to go backwards - he could not get as much work done. His issues were more emotional lability - he was hard on himself, was up and down with us at home - those issues all improved on antibiotics. His biggest most troubling symptoms were the tics. At school he was not a behavioural kid - the school did not have any concerns about him academically or behaviourally. The tics were really our main focus.
  6. Hi Kim!!! Thanks for the info on the option button - I have reset it...may just pop in more - I found it so frustrating to read the posts by having to click on each one. My PANDAS son was a picky eater - he ate only ketchup sandwiches for many many months - wonder bread and ketchup! He will try anything now and likes most things. My younger two are terrible. My middle one has had lots of GI issues which has been more our focus over the last couple years - one crisis ends and another begins....anyway he is also getting better and now just starting to try a few new foods. He had a finge
  7. Wow - that is a great article to share with doctors - we are passed the point of needing it - but at the beginning (2004) I was begging for this kind of intervention. We did consider going to the states for it. Our doctors said it was too risky for him - as he was doing ok on antibiotics - doing ok is all relative - he was not back to himself which is what I wanted - I did not feel "good enough" was an acceptable outcome.
  8. Hi Faith, I remember you too! I did not keep in touch with Claire - with hope no news from her is also good news! Her son had been doing really well when she signed off - he was a few years older than my son. My son has been on 500mg every 5 days. Yes - antibiotics has been the only medical treatment - no steroids etc. We did remove the foods and added supplements initially which for sure helped. We became very lax with the vitamins when he was getting better - he started not wanting to swallow the 15 pills I would put in front of him through the day so I let it go. We do still do pr
  9. Hi All, I used to post here many years ago....it was here where I found so much help, support, etc. Chemar, Claire, Kim, Mustang Carol, and Ronna along with many others helped me find my way during very dark times. I do still check in every once and a while (but I find the new format of threads difficult to follow - I much preferred the old way!). There is also so much more discussion about IVIG etc which was not discussed too much back then - I did ask our doctors about it and they would not even consider it in Canada at the time, same with the steroid boosts. There also seems to be
  10. My son had his tonsils out at 2 after chronic infections. He had no tics at that time. He was diagnosed with PANDAS 4 years later after a sudden onset of tics.
  11. I am so sorry your family is going through this. What antibiotics has your daughter been on to treat the strep? Azith seems to work really well for many PANDAS kids - will your doc give you some to try? She seems to have several key PANDAS symptoms - urinate often, emotional lability, tics (if that is what the shaking is?), separation anxiety, sudden onset of symptoms along with a strep infection, lack of focus, change in personality.
  12. We did this test years ago on the advise of Claire. I don't remember all the details now - but it did confirm the yeast issues - and a few other things. My naturopath talked to them - not me. I don't believe they pushed anything.
  13. I watched this documentary - scary stuff! I think you may be able to see it online at CBC.
  14. Sudden overnight onset of tics - can be caused by a strep infection - did they swab her throat. Even if she has not complained about being sick - get her throat swabbed - and preferably also get her blood tested for ASO titers. My son had throat clearing from ages 3-6 then overnight at 6 had a sudden and severe onset of motor and vocal complex tics - jerking etc - I had never seen anything like it before. You should read up a little on PANDAS. Antibiotics are what is needed if it is illness triggered, and the sooner the better.
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