peacebstill

HI, I just watched the video, do you have a link for the written article handy? Thanks, Jennifer

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 a doctor or naturopath? I looked at one of the lab test forms and there seemed to be a lot of options to check off - what do you do when checking for anything relating to Lyme? I have posts and PM's to catch up once vacation is finished, thank you for taking the time to share info and helping to connect more dots. Thank you, Jennifer

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 see what happens, will start on Monday, 10 day course, have follow up appt a monh later. Also did strep test. I'm curious to see if there is any reaction to abx whether it's nothing, easing of tics, or herxing. If herxing, I would be curious if it is related to die off with LD? Last year when we gave our son abx (after having the flu, bad colds that lasted for weeks etc., it was 10 days later he started having tics. I'm curious if his excessive/huge head nodding at that time might have been related to LD? Herxing? Only curious...... 3. Canadian Lyme Test came back negative...would like to do test offered by IGenix...but meanwhile, stepping in right directions to help our sons body be healthy, rested, supplemented etc. That's all for now, always searching for connections and footsteps from those who have been here before..... Jennifer

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

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 this stuff plainly you are very welcome to chime in! Thank you!

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 really appreciate and will be following up with it.*ILADS/CanLyme wrote back within minutes of making a query....wow, that was fast! My question for the day is - Where do we start? 1. Both neurologist and family doctor "doubt" he has LD but both admit they aren't too familiar with LD. Our sons test results will be back in 3 days. This test has not be known to produce positive results, if however it does, then family doctor says she will have him do the Western Blot test. If abx isn't going to influence any of the testing, maybe we should go ahead and start treating for PANDAS? 2. The neurologist is willing to try abx for our son for PANDAS. His approach to PANDAS is measured reserved and is skeptical - nevertheless, he is willing. What do I need to be aware of and advocate for? What are the important questions I need to be asking? Side effects or signs I need to watch for? Thank you!

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, Jennifer ----------------

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

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

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 just family doctor for now. I was hoping to explain the directions we're heading in and ask her to take a throat swab - as review the notes from last year when he was last prescribed abx. My friend also happens to have an IGENIX test kit handy and said we could use it. We haven't scheduled an appointment for abx with the neurologist yet or asked him further about the protocol he has in mind - need to learn more and ask more questions. We're waiting for his office to call back this week. We haven't seen our family doctor since she began referring us to specialists, I think I'm gonna have to catch her up to speed with the direction we're going for PANDAS. Does anyone have a standby list of points to walk someone through? I like breaking things down for others and making it plain, really simple - perhaps a contradictory but this is what I'll be putting together this afternoon and add a few articles as well for her reference. Thank you everyone for your replies, we can do this together, thank you..... Jennifer

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 of abx and see what happens. So now we're going to see when we will be able to start that. Anything we should know or ask about before we start? Ok. Now my question is which abx? How is it decided? Do you take a stab in the dark? All blood tests are normal, mri normal etc. And should it just be abx or should it be steroids at same time? I need to ask him questions on how he sees the protocol going - but I want advice from those who have been here before. Tell me again the basics of what is to be done, what to ask about, what to watch for, to supplement with probiotics or not etc. - or please link me to where this information has already been written many times over. I'm also curious if our son has LD and will be getting him tested. I've only now recalled he had a funky bite (bullseye) after a camping weekend almost a year ago. A month later he began losing weight, having fatigue, and I noticed some of his joint/body movements were getting a little odd. I'm curious. It was that month he had the flu, cold (& possible ear infection) - which I was afraid was turning into a chest cold after 3 weeks and the doc put him on abx - Amoxi. It was about 2 weeks after that our son started severe head nods - looked more like bowing or rocking out and other tics ensued from there. I know this is really basic stuff I'm trying to figure out, but can anyone tell me if I've got this right between PANDAS and LD? -they are both bacteria based - PANDAS intitially -LD bacteria itself attacks the body on many levels - joints, muscles, nervous system, neurologically etc. -PANDAS - after the antibodies attack the bacteria, they also begin to attack an area of the brain (BG / anti- neurons)causing tics and OCD behaviours -LD - you are treating the bacteria & PANDAS you are trying to control/decrease anti-neural activity? -life cycle/reproduction of LD bacteria is said to be 4 weeks, as far as I have observed - PANDAS waxes and wanes in bursts depending on triggers - diet, allergies,environment, stress/anxiety etc. Am I on the right road? So it's not all that exciting of an update. Our son is still has tics, they haven't gone away, he's doing well in school and still seems to be a well adjusted kid, and we might be trying abx soon. That's all from here for now, comments and suggestions and re-directions welcome! Jen

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 PANDAS board as our 6 year old son has had tics since last September (starting with motor and eventually we started observing vocal tics too). I think we'll start him on abx soon and will be posting over on the PANDAS board tonight too! What I found interesting about the Salt/C protocol was that it was such small amounts taken daily and the die off of the bacteria was quick. Herxing still occurred, but it could be controled/diminished by lowering the dosing amount, they recommend small amounts at a time. Also, it costs about $20/month. I just thought this was interesting and am wondering if it warrants further investigation - especially if people have several meds on the go. Here's a link for a book written about alternative treatments - http://www.lymebook.com/insights-lyme-treatment-strasheim-book At the bottom of the page is a video, after the video runs, there's more video links to click on. For those who have been having these conversations for awhile - has this been discussed and if so, can you link me please? Much to learn, Jennifer

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 in the right direction for healthy diet, magnesium, multivitamins, omegas etc. Aside from the tics, this is actually the healthiest year he has had since being born. I'm wondering, if our otherwise healthy 6 year old son does have an autoimmune challenge or there is anti-neural activity going on - is it not worth pursing treatment with antibiotics? If it works, it works and if it doesn't.....well, try another antibiotic or other treatment. Wouldn't this be better than just "wishing" or "hoping" it goes away? Is there something specific that shows up on a blood test that makes it obvious that antibiotics should be given a try? Any thoughts? Jennifer

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 material well, I'm just getting inklings and am curious what others know already! Has any one on here been looking into this? I'm certain there must have been, if so, can you please connect me to these threads? My son is currently taking a herbal supplement that reduces free radicals and in turn oxidative stress, but we're only a few weeks into it. This herbal supplement claims to clear out free radicals and turn out our own body's mechanism to regenerate new cells - I'm curious if this would include the BBB. I don't have any answers, just a lot of curiousities and wondering if more dots might be able to be connected, Jennifer

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 in his sleep - magnesium seemed to help a lot with this. Would this fit into the picture? Other than that he really is a happy well adjusted 6 year old boy! He plays hockey, participtes in school, has friends...aside from his head nodding constantly! If at this next neurolist appt we can do the tests for Cunningham's and those listed above, do you think we'd be able to figure out a clearer direction to pursue - PANDAS or transient tics? Does it work that way? Thank you again for sharing and helping us along, Jennifer

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 her colleague is researching PANDAS, although it seems to be with measured reserve. I'm not even sure what our son has really, but am willing to consider everything until we can get to the bottom of it - surely we can get to the bottom of this, right?!! Would you add anything to the list below? Thank you, Jennifer PANDAS Criteria for Diagnosis (source NIMH) - we can check off all but #4 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.) Our son has been sick a lot with colds/respiratory infection, including pneumonia, however, the Strep A test came back as negative - any idea if this means it is NOT PANDAS or is it possible that the test would not show Strep A that compromised his system years ago??? 5.Association with neurological abnormalities (motoric hyperactivity, or adventitious movements, such as choreiform movements) From this post thread alone, here's what some have suggested: Possible Causes of Tics -Strep -Mycoplasma -Lyme/Co-infections -Parasites -Molds -Allergens - especially food for gluten/caessein - Son's skin prick test showed reaction to cats - nothing to molds, environment etc. Son's IGE test within normal limits - is this where a sensitivity to food would have shown up? -Environmental Toxins Basic Tests to Have Done -mycoplasma pneumonia -lyme western blot -have any of you done this on a whim and been surprised by positive results? I'm doubtful there's a connection here, but willing to turn over every stone -ASO -Antidnase B Strep

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)

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

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 started Flovent daily at the same time as starting antibiotics as well as Singulair -Singulair and Amoxicil contain aspartame, also curious if this could have interefered with his system -we've taken him off of Singulair and Flovent, he only uses Ventolin when necessary, which has been a huge relief -we've been supplementing with Vit D, Omega 3, good multivitamin and using herbal remedy for when asthma symptoms begin, we've had good results so far If this is related to PANDAS, would strep show up all these months later? Is this worth looking into? I've read a lot about oxidative stress and ticcing and we have our son taking a supplement to combat this, it's only been a few weeks, at first we thought we saw results, and then the tics became more intense the following week and now they seem to be easing again. I'm so curious, our otherwise healthy son is having these issues. Any thoughts or directions??? Jennifer

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 on Singulair and we took him off of it because we realized the chewable tablets contain aspartame(we've learned our son is sensitive to artificial colors/flavors/sweetners). Also, there has been literature that says the inhaled medicines do a better job at controlling asthma than Singulair. But then we saw the inhaled steroids caused severe reactions/tic'ing and have taken him off that too, gulp, his asthma can be severe. He has a cold now and his asthma is acting up, so now we're using Ventolin as needed and Resperactin Breathe Free Formula for Children (found at Health Food store). I'm not saying it will work for everyone, but so far he seems to be getting through this cold without the steroids and minimal use of Ventolin. I'm hoping this continues. Little by little.....

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!

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're on a journey too. I'm glad for the info shared in this post and forum, I hope you, we all, make good connections and find a good place to stand and go from as many others have. Jen

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 doctor is doing further blood tests - I don't have the list handy, but she said one came back that tested high in protein. When I search elevated protein, urea (soon to be tested), asthma, and tics - one factor keeps coming up in common - oxidative stress. A friend is encouraging us to try a natural herbal supplement that turns on the body's natural antioxidants that will eat up free radicals which cause damage/oxidative stress and flips the switch to start regenerating cells. Anyone out there familiar with this??? Anectdotal evidence shows that asthma, allergies, as well as many other ailments significantly decrease and sometimes even disappear when taking these supplements. Would it hurt to try herbal supplements? Any advice, cautions, suggestions? We elimnated milk/dairy for almost 3 weeks and we did not notice any difference. Next we'll try gluten as recommended by the naturopath. I thought dairy was hard to avoid, gluten is going to be a challenge! But we're encouraged from the stories shared here and know it's well worth the effort. Do you find one week as suggested in reply above is enough to discover food sensitivities or does it need to be longer? Asthma (inflamation), tics (possibbly from inflamation of nerves?), elevated protein (can cause inflamation in organ linings etc), possible food sensitivies can cause inflamation, oxidative stress, build up of free radicals.....??? Does anyone understand/see a line of connection or place to stand and go from? Search results come back plentiful on the web, but if anyone has had personal experience, success or even failure going the oxidative route through herbal supplements, please share or connect me with sites/previous posts! At any rate, thanks for letting me ramble here while I try and connect the dots, experiment, listen, wait, watch, and see!

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 drugs at all. If the tics are connected to his asthma meds and lessen when withdrawn, that would be a huge relief! I've been giving our son DHA Junior/cod liver oil. I didn't realize they could make the tics worse. I'm new to so much of this information, have others had difficulties with cod liver oil? Thank you.

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, did tics lessen/disappear after weaning off of these drugs? I've seen connections in other threads/articles on effects on dopamine levels and effects of withdrawals from stopping medicine and the effect on adrenal glands. Are these things that should be tested? And if so, how can I help rebalance those levels? 2)Our son has been tested for allergies - skin prick tests. Only an allergy to cats showed up - environmental and food test showed no reaction. Is it possible my son's body still has difficulty tolerating wheat,dairy, etc? Are food allergies obvious? He has been off of dairy for a few weeks and we haven't noticed a difference. Next we'll try wheat - is there a test that can save us guesswork? Blood test IcG?? 3)Since he is off of all asthma meds, how can we support his immune and respiratory stystem? Has anyone used/recommended Respiratol? Currently, he is taking cod liver oil, good quality multivitamin, Vitamin D and Natural Calm. Am we heading in the right direction? We've been to a pediatrician, neurologist and have had an MRI done - all is well. Is there a good direction to go in next or things we should be aware of? We're hoping that the tic will just go away as his body rebalances from the asthma meds. We're kind of in a funky space of waiting and watching. Anyone else out there with a similar experience or can point me in the direction of old posts I can connect with? Many thanks!