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peacebstill

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Everything posted by peacebstill

  1. HI, I just watched the video, do you have a link for the written article handy? Thanks, Jennifer
  2. Hi All, Thank you for all of your posts and PM's! We've been away for awhile but I wanted to take a moment to update. Our son did a 10 day course of abx. While on it, new tics and an increase in old tics was noticeable. It's been 2 days since he's finished the course and it seems as though the tics are calming - not gone - but slowing down a bit (still a lot of stuff going on). So now we continue to observe and we'll have a follow up with the pediatrician in a couple of weeks. Question: To get IGENIX testing done - do you send away for a kit or is it possible to get one from
  3. June 18, 2011 - an update (I like your numbering system LLM and am following suit, thanks!) 1. Neurologist report - our son does not have PANDAS and he declined to treat w/abx - maybe he's right - maybe it's PITAND or LD or something else, is it ever "just tics?" I have my hunches. Neurologist boiled it down to our son just has tics and he believes they will go away by puberty...Would it be more correct to line up with PITAND moreso thoan PANDAS? Actually, I'm wondering if LD caused the initial infection which led to PITAND/PANDAS. 2. Pediatrician is willing to try abx just to s
  4. A little more help for clarifying? I'm feeling very slow to understand the difference! PANDAS - associated with Strep A only? PITAND- associated with any infection - wider umbrella? could be triggered by an inital strep or any infection? Paediatric Infection-triggered Autoimmune Neuropsychiatric Disorders Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococci If connected to or caused by LD...would it be more right to line up under PITAND than PANDAS? Jennifer
  5. Thank you for sharing. I PM'd a note to you as well. I hope you will keep us posted with how the treatments go. I'm encouraged to go ahead and take the neurologist up with his offer to give abx for PANDAS since it can be difficult to abx prescribed for LD. So whether PANDAS or LD or both, abx might or might not have an effect and this will be interesting to see. I'm looking into both conventional and alternative/natural treatments for LD as well. I'm starting to have a hunch that LD has been the cause of PANDAS for our son -am I erring in making that assumption? Anyone who sees th
  6. Thank you for your post and information. From what you shared, it looks like taking abx isn't a concern with regards to LD testing. We're kind of in a funky space of waiting and figuring out what to do for our son. I'm doubtful we're going to be in touch with any doctors or specialists who are literate about LD or have any understanding of PANDAS. However, if anyone knows of anyone who we can contact in Ontario, Canada before July we would welcome the connection - then we'll be moving around a lot and it will be awhile before we settle. Thank you for the information and connections, I rea
  7. Hi, Someone had suggested to include my post below from the PANDAS board over here on also. Tomorrow we're visiting our family doctor to look into the possiblity of Lyme's Disease. Later this week/next week we'll be looking into abx to treat son's tics. I undertand it's a good idea to do a throat swab and IGENIX test kit before starting abx for either of these two possiblities. If our son does have LD, I'm hoping we could be connected with a LLMD. My rambles are below - if anyone feels like they have good connections/advice/re-direction for me, please do share! Thank you, J
  8. Thank you for sharing about your family's experiences and showing me what it has looked like for you, and what you have been learning through it all. I was curious, could there still be a herx effect though for PANDAS/abx too - tics getting a little worse before better? I'm learning a lot about LD and its processes and treatments - from abx to alternative protocols. There's a lot of dot connecting going on and I hope for it to be done well. Hoping right along with you, Jennifer
  9. Thank you - and are all the courses the same? How does it start and end, what are we watching for - the tics to cease? Will it be for just 5 days or do you keep going until you reach a certain point? Some of the liquid suspension of abx contain asapartame - is it ok to crush the tablet which does not contain aspartame and mix it with yogurt? Equip me! Thank you, Jennifer
  10. It is good that you are posting. You have much going on right now. If you've not done so already, you may want to copy this post onto the lyme board. They will have good advice for you. I would find a lyme doctor if I were you. If you start on antibiotics right now, it could have an effect on your lyme tests, as some antibiotics put lyme into "hiding" and make it harder to deterct.... so I would proceed with caution until you get to a lyme doctor or do an igenex test. --------------------------------- I was thinking this very thing. I have an appt tomorrow morning for LD but jus
  11. Hi, Someone had written on another post that they wished that people would update their posts so they could hear about how things have progressed. So, I will write a little and ask some more questions as I forever dig and research for more answers. We had a great few months in Feb/March (still had tics each day, but weren't intense and were barely noticeable), but since mid March, our son's tics were consistent and some new vocal ones cropped up - humming, chomping. We're seeing a neurologist who approaches PANDAS with skepticism and measure reserve, yet he is willing to do a course o
  12. Hi, I'm curious if anyone has tried alternative therapies such as the Himalayan Salt/Ester C protocol to kill off LD bacteria? Also, has anyone used and can explain what a Rife machine is? Is anyone ozone-ating their water??? Obviously, I stayed up too late looking into alternative treatments for LD (just watched Under Our Skin recently too). This has my interest now that my friend has learned finally that she has LD - and now might be get my son tested as well as we just now recalled a strange bite with a bullseye type rash around it from last year. I usually ask questions on the PAN
  13. Hi, I'm curious now...we've been told by the several specialists we've seen that they are not worried about our son's health (bloodwork & mri "normal" - actually waiting for one last round of tests to get back this week) and hope that the tics will go away on their own. Of course I'm not content answer nor willing to settle for this. We've been referred to a movement specialist 6 months down the road to approaches PANDAS with cautious skepticism and says the research is not conclusive to suggest treatment (they are expecting the tics go away before the appt is due). We're moving i
  14. Hello, I'm intrigued by the discussion of the BBB and if it's possible to heal once the offending agent/virus is elimnated? I thought I had seen articles posted on this forum a short while ago regarding oxidative stress, is anyone aware of its link? Also, I find a lot of interesting research and information when searching "blood brain barrier and "oxidative stress" and "PANDAS"; neurological issues are discussed in relation. I'd include the links but you'll come up with plenty of your own when you search it. And I'm leary to post any links on here without understanding the materia
  15. Thank you for sharing. I haven't noticed any OCD'ish behaviours. As for some of the things you mentioned, perhaps bedwetting would fit in here, maybe some of his emotional outbursts (cries when upset over little things or misunderstandings) and perhaps his fidgity-ness at the dinner table - he can't seem to sit still sometimes, teacher also noted he was fidgity at school-for example during circle time. There are periods where he'll wet the bed more often - it usually happens just before he gets sick. He is usually a fairly solid sleeper, although sometimes he'll grind his teeth and talk
  16. Thank you everyone for your responses and information, I'm taking notes and listening to others' experiences and trying to connect more dots - this will surely make for an incredible picture - one that I am interested in drawing some days more than others, but it's all going somewhere, right!? We have an appt with the neurologist in a few weeks and I'd like to be well prepared to look into all possible causes of these tics. In your experiences, where have you found the best starting places/basics to cover? I'm told the doctor we're seeing takes an active approach to her patients and also
  17. Is this the current criteria for PANDAS diagnosis (source: NIMH Pediatrics Development's site)? 1.Presence of Obsessive-compulsive disorder and/or a tic disorder 2.Pediatric onset of symptoms (age 3 years to puberty) 3.Episodic course of symptom severity 4.Association with group A Beta-hemolytic streptococcal infection (a positive throat culture for strep. or history of Scarlet Fever.) 5.Association with neurological abnormalities (motoric hyperactivity, or adventitious movements, such as choreiform movements)
  18. Thank you for sharing this, it helps put things in the right place. I'm curious then if after this blood/brain barrier has been reached, if this is what opens individuals up to medications, artifical sweetners, flavors, color and various other triggers whereas some they have seemingly no effect on others. Interesting! Thank you for sharing your opinion and experience! Jennifer
  19. Hello, Our son has been ticcing for the last 4 months now, he nods his head up and down and sometimes he'll wave his arms or jump a bunch. Before this began, he had a cold that lasted almost 4 weeks I was afraid it might turn into a worse repiratory infection-he's had pneumonia before. Before school started, we wanted him to get over it and the doctor prescribed Amoxicil. A few weeks later, he started nodding his head and hasn't stopped since - some days are less severe than others. He was not tested for strep. -we thought maybe the anitbiotics caused the ticcing (?) -he also sta
  20. That is what I am struggling with, my son's asthmas looks really out of control now, he is on singulair and he has a little bit weezing everyday, with some cough. Steroid is our last hope, but everyone knows how bad it effects tics. So hopeless Hi, I know how you feel. I'm encouraged by these forums though and know we can get these things figured out, even if it's painfully slow at times. I wish I could snap my fingers and instantly understand all of our body's processes, what's needed for balance, foods, medicines, etc. But little by little...I know how you feel. My son was o
  21. Thank you! I'm sifting through all this info, thank you for sharing! I also wanted to note that Resperactin (herbal) has been very helpful for our sons wheezing/congestion/coughing. This has been a relief!
  22. Hi, I don't have any advice for you, just a little piece of information that might be of interest to you and others? I've recently learned that Singulair chewables contain aspartame, it makes Singulair sweet and more appealing for children to take. My son is senstive (tics) to artificial sweetners, flavors and colors so we've taken him off Singulair. Singulair pills you swallow do not contain aspartame. Other asthma meds have recently been stated to be more effective than Singulair. My son, however, is having issues (severe tics)with his inhaled meds too (steroids/dopamine)- so we
  23. Hello, Our journey into tics continues...I appreciated the recent post about Omega's in this forum, thank you for the information. I checked Nordic Naturals source of Omega Oil and it does come from cod. How would I know if my son reacts badly to it? Would his tics increase? He's been taking it for over a week and I haven't noticed a change in frequency/amplitude of tics. I'm thinking of switching to one based from anchovy/krill etc. as suggested in above post and the Omega post, but want to figure out if my son is sensitive to it first or not - still have a whole bottle to go. Our
  24. Hi, Thank you for your comments and notes. We're not sure if our son has allergies, we've only had him tested and he is not taking any allergy medication. He was on drugs for his asthma only. There's been a suggestion that there could be a link between food allergies/interactions and inflamation/congestion that might also be connected with asthma. Does that make sense? Our son will get a cold and then asthma ensues. So in our line of thinking, if we get rid of some of the root causes of asthma (maybe reaction to food?) we might be able to reduce asthma and in turn need for any dru
  25. Hi, Our 6 year old boy started having head nodding tics about a month ago. 2 weeks before the tic began, he finished a 10 day course of antibiotics (I don't know if he had strep, but his cold of 3 weeks was worsening and doc prescribed antiobiotics). He also has asthma and was on Singulair and Flovent. Since he started nodding his head, we have stopped Singulair and 2 weeks later we quickly tapered off of Flovent. His tics would immediately become more severe within 15 minutes of taking inahling Flovent. 1) Has anyone experienced tics as a result of Singulair or Flovent? If so, d
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