Chemar

bmom if it is PANDAS you dont need info beyond what you have...the strep titres should tell the rest of the story. when we went to see dr Murphy, all I knew was my son had literally changed over night and was clearly not ok. He seemed to fit the PANDAS criteria, even tho he had never even been dx with strep throat.......but the blood test showed otherwise. if your child is dealing with PANDAS, honestly my personalk opinion is the sooner you start eefective and specific treatment, the better his overall health will be. Nothing drains our systems more than continuous immuno reactivity to a microbe.

Hi Emma my son uses the pure Inositol powder by Jarrow, and he mixes it into his morning health shake. Jarrow also make the pure crystalline Inositol in a capsule. I buy them at iherb.com as it is cheapest there, even with shipping added

it is called The Yeast Syndrome by Walker & Trowbridge ($7.99 at Amazon and also available at bookstores.)

hi yes...Visions cookware is all glass, and can sometimes be found on eBay enamelled cookware is another option

I do just want to comment here that chiropractic treatment and acupuncture have been a BIG blessing to my son. The tics can really mess up skeletal allignment and that in turn can trigger more. And nothing brings my son more instant relief when he is in waxing mode than an acupuncture session...

hi Rachel the probiotics are intended to replenish the good biotics that occur naturally in the gut, and that the antibiotics kill off. where omega 3 from fishoil or flaxseed etc is an essential element for healthy functioning, yet it doesnt fall into the same category as replenishing natural flora on another thread I mentioned monolaurin (lauric acid from coconuts) which is a powerful natural antimicrobial other natural antimicrobials include olive leaf extract, oregano oil, garlic and honey That is interesting that Dr Murphy's assistant said they believe PANDAS continues into adulthood!

thanks for your update annag do keep us posted as you never know when your experience can help another all the best

my 18yo son, who has genetically inherited Tourette Syndrome, was dx with Crohn's in 2006, but I believe he has had it since 2004. He was dx with the TS in 2000, altho we know he has had tics since very young he has hardly ever had antibiotics in his whole life and has never had a strep infection, altho my older son did have strep throat in the late 90's. He is 21 and has no tics, OCD etc . My son went on a mission trip to Nicaragua in 2003 and had to have vaccinations. There was a cover story in our local paper about new research pointing to Crohn's possibly being triggered by a bacterial infection. My son has found MonoLaurin (lauric acid supplement, made from coconuts) to be very helpful during crohn's flareups. It is a natural antimicrobial. He takes other gut protective and antiinflammatory supplemtns only for his crohn's and is doing a lot better than folks we know on steroids etc for crohn's. The doc's did want him on antibitotics for that too, but we declined and used the monolaurin instead re Probiotics, we have only ever used natural kefir and yoghurt with live cultures. and not supplements. I can sure see why any probiotic that may contain what are usually helpful strains of strep cultures, would nevertheless be a trigger for kids with strep related PANDAS

hi Emma I am a bit confused by your post tho I may have missed something in previous posts which ANTIbiotics "keep the strep titres high" ?? The antibiotics usually bring them down as far as I know? Also,where did you read that longterm antibiotics can cause Crohn's? The latest view on Crohn's is that it is caused by bacteria, and therefore antibiotics are used to HELP in some patients, as I say, maybe I have missed something as I confess I havent read all posts

hiya Ronna always so good to see you we have always used natural yoghurt and kefir and not supplemental probiotics and my son seemed to do fine with them since the crohn's reared its head tho, he even stays away from them as they seem to trigger an autoimmune flare. as there is growing evidence that Crohn's is likely triggered by a bacterial infection, possibly myco strain, it wouldnt surprise me if the same can happen when PANDAS kids are exposed to strep related bacteria in a probiotic thankfully my son doesnt have to take any antibiotics. What a fine line we have to walk with their sensitive immune systems huh

i just saw this article and thought it may be of interest to Faith and those that see their kids not having the waxing with illness/fever that most of us seem to see http://www.woodtv.com/global/story.asp?s=7443392

Hi Jeremy and welcome the focus here at Latitudes/ACN is more on alternative treatments rather than on meds. I can speak from experience tho that medicating for OCD did not help my son, in fact things actually got worse,but the combination of Cognitive Behavioral Therapy (CBT) and supplements to boost serotonin really did help we have a sticky here with some useful info http://www.latitudes.org/forums/index.php?showtopic=1963 please dont try any OCD supplements while you are still on the prescription meds, as that can cause serotonin spiking which can be very dangerous. Based on what you are describing, I would highly recommend finding a CBT therapist. It **really** helps!

hello Hope I seem to recall that Claire may have had mold cleanup done?? if you do a forum search on the keyword mold you will get many threads coming up, so maybe look thru some of those and also search in advanced mode with keyword mold and posts by Claire I found one on a quick search http://www.latitudes.org/forums/index.php?...034&hl=mold

Airbucket, the majority of reports i have heard are that "true" genetically inherited Tourette Syndrome kids *DO* have increased tics and other Tourette spectrum symptoms both before, during and after an illness/infection, and certainly my son (as well as my husband) exhibit this altho a few, like Faith's child, seem to have waning when ill with fever, yet from what I have heard, most exhibit waxing. I tend to think this is in some way linked to the immune system. When ill, the immune system is hyped up. I think that may be impacting the waxing of the TS symptoms.

flying by for a quick reply airbucket, YES, kids with TS or other neurological disorder gene *ARE* the ones who react to illness/ infection with a waxing of their pre existing neuro symptoms however, for example in PANDAS, both neurologically susceptible and other kids appear to be able to be affected so that in eg a genetic TS and/or OCD child, things can intensify with strep exposure or infection and in those with no previous history symptoms can suddenly appear. sorry for the very simplistic attempt at explaining a very complex phenomenon, but hope it sheds some light

hi Airbucket so sorry your child has the flu so bad but glad you checked first before using the tamiflu because all the research and info on PANDAS and PITANDS is still relatively new and still controversial in conventional medical circles, it does become confusing sometimes to separate fact from theory strep is a bacteria and PANDAS does seem to be associated with the streptococcal GROUP of bacteria, not just the strep that causes the "classic" strep throat PITANDS is a term that has been used for conditions where the link is microbial (bacterial, viral, fungal, amoebic, other parasites) but not limited to strep Although we dont even vaguely understand it yet, still by anecdotal and some research evidence, we clearly know that many kids with TS (and it seems some of the other tic disorders too) have waxing when they are ill, .....it seems that when the immune system is battling illness, tics go up. here are some links on PANDAS and PITANDS that may be helpful ( do not that some of the info is outdated but the concept is well explained) http://intramural.nimh.nih.gov/pdn/web.htm http://www.tourettesyndrome.net/pandas_overview.htm

bmom there should be a "source" for the DHA listed on the bottle as it must have come from somewhere I know only the basics on the omega stuff, was initially told to give my son balanced 3,6,9 but since his dx with Crohn's he gets only the omega 3, as the 6&9 can promote inflammation, a good thing in balanced normal diet but bad for those who have autimmune illness Here is a comprehensive thread MrsD has on EFAs at neurotalk I think you may find more details there

Patty again I stress it is NOT the FISHOIL that is essential .....BUT OMEGA3 fatty acids that are essential. altho fishoil is an excellent source of omega 3....*it is NOT the ONLY source* and i linked above to show how one can obtain omega 3 from other sources apart from fishoil so if tics increase with fishoil, do TRY one of the other sources, of which flaxseed oil is the richest in omega 3

hi kallik one can usually safely have epsom salts baths, as it is a different absorption than the supplemental intake.

hi yes, having to reply a certain way and all the other things you describe are characteristic of OCD do be careful switching back and forth on different antibiotics without doctor guidance! also, are you giving a good probiotic either three hours before or three hours after the antibiotic. If not, you could be seeing an OCD outbreak because of Candida overgrowth(yeast infection in the gut)

please do remember that, in most people, it is highly unlikely that OMEGA 3 itself is causing increased tics, but rather that it is the *source* of the omega 3 in FISHOIL specifically that *some* people react to with more tics. wikipedia has a good article on omega 3, which includes its other sources http://en.wikipedia.org/wiki/Omega-3_fatty...923_fatty_acids my son has increased his intake of walnuts as they not only have good omega 3 content but also help boost serotonin. He also uses freshly ground flaxseeds on cereal, salad etc and we eat fresh alaskan salmon often as he does not react negatively to fish the same way he does to fishoil I dont know the specifics re omega 3 and PANDAS, but I do know it is essential to good health and also is an anti-inflammatory and usually recommended for those with auto-immunity

kallik have you tried Epsom Salts bath with chamomille tea to try to sooth him before bed? even Epsom Salts foot baths can have a very soothing effect. also, massaging his feet before he falls asleep....especiallyaround the balls of the feet and the toes. I know zinc deficiency can cause leg pain etc at night so maybe look into that too there is a disorder known as Restless Leg Syndrome, but I think that affects adults more than children.

increased tics in cars, fluorescent lighting, pesticided environments (indoors and outdoors) etc are common for people with TS, and yes, excitement, nervousness, anticipation and even self consciousness can increase tics. here is Sheila's tic trigger article from Latitudes home site again http://www.latitudes.org/articles/finding_triggers.htm and just to reassure.........my son is now driving and is doing just great with it. Interestingly for my son, when he is steadily focussed on something, his tics have always reduced. I have heard others say similar.

Hi Kimmie I would like to commend you for trying to understand and to help your boyfriend. I will to try to answer your questions: If you follow the link in my signature you will see how alternative treatments helped my son move from very very severe Tourette Syndrome to it now being mild, and no longer interfering with his normal life. There is also a really good book available on the subject http://www.latitudes.org/book.html as well as a helpful article on identifying tic triggers http://www.latitudes.org/articles/finding_triggers.htm Diet is IMO an essential component. If you read more here you will see how artificial food additives (coloring, sweeteners like aspartame/nutrasweet and sucralose/splenda, MSG, preservatives like sodium benzoate etc) can markedly trigger tics and OCD Many of us have found that by improving diet and nutrition, things get a lot better It is *very* hard to deal with some tics, and so your reaction is understandable, especially with loud vocal tics, but you need to remember that it is far worse for your boyfriend knowing (and yes, he knows) that others are affected by the tics. The L-carnitine amino acid has proven helpful in many cases of vocal tics(including my son) honestly, from a mom who saw Haldol and other medications produce severe side effects in her son I would urge that your boyfriend first try other means... it is very possible that his tics are getting worse because of one or more of the triggers discussed in that article I linked to above. It may even be that he is trying to suppress the tics more, and that in itself usually leads to them becoming more intense re the smoking.......I hope he is able to quit BUT he may well benefit from a nicotine patch. As much as I hate to even say this, research has shown that nicotine has a tic reducing effect. If he would be willing, there are a few things that may really help him to get started 1. the l-carnitine may help with the vocal tics 2.taking extra magnesium (preferably magnesium taurate, available at the Vitamin Shoppe stores or online....but also magnesium glycinate, or the Natural Calm drinkable magnesium citrate) Magnesium has been found to be very calming for tics. Taking a bath in magnesium sulfate=Epsom salts (2 cups in a tub of warm water, soak for 20-30 min) can have a very rapid calming effect on tics too and promote good sleep 3. get rid of all artificial additives in diet and maybe check for food allergies (eg gluten or lactose etc) there is so much more I would like to add here, but my time is limited right now...and so I just want to encourage you....I am married to a man with TS and one of our son's has it. And yes, it isnt always easy......but if you really love this young man, between the two of you, you *can* find ways to make this work. It takes dedication and care, but my family is proof positive that Tourette Syndrome does not have to negatively impact life. I hope this helps a bit Kimmie, and that you will continue to ask questions here and hopefully be able to help your boyfriend

Thanks Kelly yes, I think you will find most people have had the dual titres run, and hopefully those docs who know about PANDAS would know that...but it is a good reminder for anyone who may not have known about the importance of having both done. we have some threads here on PITANDS too, tho far less info is generally available on the theory so many of our kids, even those who dont have PANDAS dx, do seem to be triggered so by illness and infection, and we also have the indications of the fungal Candida connection in triggering tics, OCD, "brain fog" and all that stuff, that I do feel there is validity of the concept of microbes impacting our neurologically suceptible kids. Cheri