Chemar

Hi Lisa and welcome when we did the Candida diet we followed that outlined by Walker & Trowbridge in their book "The Yeast Syndrome" it is a phased diet with the first phase being very strict and then gradual reintroduction of foods, until maintaining an overall balanced and healthy diet my son was already on very limited "refined/processed" food intake by that time, so that was easier as he wasnt consuming a lot of sugars and his carbs were mainly whole grains etc The OT he had was specialized for kids with sensory disorders. Our therapist is the one who introduced me to The Out Of Sync Child book, which I found very helpful. There were many aspects of the therapy but the weighted covers for sleep/relaxing and the skin brushing were amongst the most beneficial. Also using the daylight lamps to prevent flicker/flash from Tv & Computer, videogames etc we also got him a swing hammock and one of those mini trampolines as he really enjoyed those in therapy there was more stuff but those stand out right now we never did any specific immune testing and learned of his autoimmune condition when he was dx with Crohn's after a colonoscopy/endoscopy in 2006 but yes, I do think the immune system and inflammation play a primary role in many neuropsychiatric disorders in our case, we were trying to boost his immune system as that was "in"...once we learned he had an autoimmune condition, we looked more to modulate it and avoided the "boosting" supps my son has never had neurofeedback for 2 reasons...his physicians advised against it and everyone whom I have encountered who had it done for a child with Tourette or OCD seemed to feel it had a negative effect. Also a parent who used to post here, Claire, found it had a very negative effect on her child, (he did not have a TS dx, but had phtosensitive induced ticcing) I know it is used successfully for ADHD and some other disorders so I am not negating it's value...just taking his doctor's advice that it is counterproductive for TS and OCD, and heeding the warnings from other TS parents. I know it is "in vogue" with many alternative practitioners, but I think caution is needed on who is treated with it. JMHO

all done I know I have read other accounts here by PANDAS parents of this regression in behavior during exacerbations,to that of a more "baby" phase, along with the continuous "reporting" of all they are doing(I touched my nose with my finger, I touched the carpet with my toe, etc) and repeating things over and over...... and saw it in my son as well during one of his worst tourettic OCD flares

Hi glad you have posted here as there really is a possibility you are seeing symptoms of either a co-infection or maybe related directly to what the Lyme infection has already done. I am hoping lyme mom will see your post as well as the other parents here who deal with Lyme what would you like changed in the title of your thread? I can do that for you

yup, sadly it does seem that some of the vaccines can trigger tics. probably related to both the immune response as well as some of the adjuvants they put in them Kim has a lot of info on the vaccine stuff. A recent study at Wake Forest Univ found measles from the vaccine strain in the guts of some kids who have autism and IBD!!! and yup, stress, excitement and concentration do seem to be common tic triggers just keep trying to put the pieces of the puzzle together. Glad you have Sheila's book as it is such a valuable reference to help you sort thru all this! also do take a look at the article on tic triggers on the main page http://www.latitudes.org/articles/finding_triggers.htm

basically any infection can have a dramatic impact on a child who is already susceptible from another infection or even the genetic predisposition for neurological disorders one of the culprits can be candida albicans ("yeast" infection) another being discussed a lot on the PANDAS board is Mycoplasma in highly sensitized kids (which Lyme can do) even a cold (or as we discussed above, allergies) can trigger the immune/inflammatory reaction that causes a flare up in the neuropsychiatric symptoms you really may benefit from reading more on the PANDAS board and also from the posts there by lyme mom. Maybe even PM her for more info http://www.latitudes.org/forums/index.php?showforum=17

yup...allergies can trigger flare ups too basically anything that sends the immune system into overdrive and causes inflammation can result in waxing but the kind of extreme symptoms you are describing really do make me wonder if this is either Lyme related or a possible co-infection as so many of the PANDAS & PITAND parents have reported similar

san SID isnt always going to interfere with functioning significantly but it can cause mood meltdowns indirectly it can have really subtle effects as well as glaringly obvious ones really is worth checking into as it is common in kids with neuro issues

we have a lot of posts here about many kids with TS being sensitive to fish oil (my son included) as the source of their omega 3 for them, flaxseed oil seems top be a better choice

Hi so sorry to hear of this. I know from personal experience how scary it is. Tourettic OCD (where tics and OCD symptoms morph and merge into each other) can also wax when there is infection or some other trigger on the PANDAS forum they call these exacerbations, when a child infected with a microbe is either reinfected or exposed to the same (or even a different microbe) with you child already diagnosed with Lyme, this may be what is happening. He may be PITAND (pediatric infection triggered autoimmune neuropsychiatric disorder) is your son on antibiotics for the Lyme? any possible exposure to strep? other infection? the regression in age appropriate speech and behavior is noted in PANDAS & PITAND exacerbations so it really would be wise to check into this. Even the repeating and reporting is a symptom. This doesnt necessarily mean that his TS diagnosis is wrong...but just that the infection aspect is triggering more issues to compound that the parents on our PANDAS/PITAND board may have more details to share with you sure hope things get better soon

Hi my son does not have PANDAS but we do believe there is likely a PITAND component associated with his genetic Tourette Syndrome/OCD, as he did test + for Epstein Barr Virus (tho no mono) and also has Crohn's disease however, a lot of the natural protocol that we follow for him may be helpful too in PANDAS as related to the anti-inflammatory diet and supplements he takes, as well as the natural antibiotics I have a link in my signature that details the natural treatments we have followed, and updated it earlier this year with his current protocol I am in the middle of a busy work project right now so will try to update here later, but if you do a search on this forum for curcumin and also for anti inflammatory diet, you should get some recent threads on the subject coming up hope that helps a bit and I do also want to highly recommend Sheila's book as it is an excellent reference!

Hi Debbie and welcome, tho sorry to hear the struggles I am real biased against psychiatric meds as they seriously messed my son up, rather than helping him. However, he wasnt ever on clonidine....my husband, who also has TS, was on it briefly and it had horrid psychotic side effects on him. The docs had put him on it to lower his blood pressure the meds my son was on were haldol, luvox and briefly, naltrexone, zyprexa my son does not have any dairy allergy and has chosen his limited "dairy free" as part of his Crohn's Diet He does have a small amount of lactose free organic milk in a cup of organic TAZO Chai each morning, and eats his Stoneyfield farms plain organic yoghurt 3 times daily for protein as well as probiotic re the supps, not everyone will need all of those and as you noticed from my latest update, my son now takes far less supps than before it is hard to suggest what is most important as you are dealing with Aspergers and we with Tourette, and also the supps that work best for OCD, anxiety etc are best not taken when someone is still on meds, altho my understanding is that Inositol is generally safe to take the magnesium really does seem to help with tics, nomatter the cause, so epsom baths as well as natural calm may be a good place to start I find that ordering supps from iherb.com is most cost efficient as even with shipping, they are usually far lower than buying them at health stores let me know if there are any specific supps you had questions about of anything else I can try to help with hoping things stabilize soon

hi where I agree it is always wise to check for possible PANDAS, dont neglect to also check into other possible triggers for his tics helping a child with tic substitution is fine, sahm, as long as there isnt stressful pressure put on the child to alter the tic, because sometimes they simply cannot. the teachers definitely need to be educated on the involuntary nature of tics and that telling his to "stop" is like waving a red flag at a bull.........forcing someone with tics to suppress them can cause a tic explosion or result in more OCD, anxiety etc are you keeping a journal to try to determine what his tic triggers are? You would be amazed at how some things that you may not even have suspected stand out as triggers when you start keeping a log

Hi Mar one of the first signs many people get of an allergic reaction is the brain fog my son has multiple chemical sensitivity and this is always his first symptom

yikes bewell ...lol that long text makes me glaze over, but skimming it, and the video..... I still do not see where there is any suggestion that the genus mycoplasma is the same as the genus mycobacterium I am still finding that everywhere I look they are two distinctly different microorganisms

so glad to hear it is on the wane Bonnie

Wendy I think the confusion is that we are not talking of the different subtypes of Mycoplasma but about the actual microbe that is named MycoBACTERIUM as opposed to mycoPLASMA all references I am finding indicates these are *not* the same organisms

hope you are all feeling better, Bonnie

hi bev glad to hear things have been improving tho sorry you are having to deal with waxing again the answer is yes and yes and yes stopping a supp that has been helping can result in a waxing and eating junkfood, especially after a long period of pure food, can also be a trigger. I have no idea what McDonald's puts in their food but I do remember it as being a major trigger for my son, both re tics and gut issues and yes, as kids (especially boys) with TS enter the hormonal years, it seems the tics wax too, likely due to the dopaminergic effect of steroidal hormones you mention there were a number of reasons for stopping the taurine not knowing what those were makres it hard to say whether you should start it again but if none were serious issues, then I would think it may be worthwhile restarting the taurine and see if the tics reduce again which would indicate to me that his system needs it

thanks phasmid...that was also my understanding from the Wikipedia article, that mycoplasma and mycobacteria are different

http://www.out-of-sync-child.com/ excellent website and book my son was much helped by specialized OT for his SID stuff when he was younger. he had only a few sessions and learned how to do stuff himself to help. things improved so that he now wears socks right side up but still cannot tolerate labels so we are most thankful that so many aware companies are now stamping in the info instead of attaching labels and yup, weighted bedding things are a big help (just an FYI to kimballot that using the abbreviation SI can be confusing as that is used for Self Injury. SID is generally used for Sensory Integration Disorder)

(((Bonnie))) I do hope and pray this passes quickly for all of you. It is bad enough when our kids arent well, but when mom is sick too............. dont forget the soothing mix of fresh lemon juice and honey in a cup of hot water....it really does make one feel better when having tummy trubs and both the lemon and the honey are antimicrobial milk thistle also helps the liver unload the toxins faster too

oh dut...lololol you shoulda seen my son's face when I showed him that article he says he will stick with the careful diet and supplements thank you very much that is interesting tho now, coupled with the info Kim posted on PANDAS board yesterday that researchers have found live measles from the MMR vaccine strain in the guts of kids with autism and IBD.wonder if the worms eat the microbes oh my goodness huh how our "modern medicine" has so often messed us up!!

I think one needs to be very cautious in not driving a flare in OCD into overload and crisis when one may want to implement "tough love". As frustrating and exhausting as it is to deal with a kid who is hyperOCD, it is even worse to watch your kid go over the edge and end up in hospital and not know if maybe your reacting to them was what tipped the scales!! I speak from bitter experience from years ago when my son was in a severe tourettic OCD phase and I snapped and told him, to "stop that right now!" he looked straight at me with glazed eyes and seriously injured himself. I know it wasnt my fault, as it had been intensifying for days, and I had been more than pouring myself out to help him. But that nagging feeling of guilt remains in wondering "what if I had not gotten so upset because of my fear I will forever be thankful for how my son was helped by Cognitive Behavioral Therapy and how much I learned in coping mechanisms in attending some of those sessions with him too! anyways, I know all kids are different and mine was in serious crisis mode when that occurred, but you asked for suggestions and so mine is to be very very careful, nomatter how hard it is. I sure do sympathize with how you are feeling tho!

so glad to read that the eye tic is settling down now Lynn and continued hopes for daily improvement for Lauren I noticed your comment re the computer and wanted to say that we have a number of threads on the TS/tics board here on photosensitive triggered tics. Seems a number of kids react to flicker, flash, fluorescent lighting etc with increased tics, especially eye blinking/rolling etc if you search the terms photosensitive, photosensitivity, screens, and also posts by Claire my son has mild photosensitive issues, and we have found this much reduced by only using LCD screens (TV and computer) as well as keeping a "daylight lamp" on to reduce flash and flicker (we avoid the fluorescent ones and use only incandescent) my son also knows that going to the cinema = increased tics, both as a result of the flicker/flash in a darkened room, but also all the other sensory overload stuff with the loud sound, and multiple smells of perfume and cleaners etc. So many kids with neuro stuff also have SID...sensory integration disorder....and photosensitive triggered tics can sometimes be a result of that take care of yourself in the midst of all you are having to keep up with! all of the best to you and Lauren

from my understanding mycoplasma p is a bacterium that is one of the microbes implicated in pneumonia, but not the only one that causes pneumonia (I think I am correct on that?) http://en.wikipedia.org/wiki/Pneumonia here is some Wiki info on Mycoplasma http://en.wikipedia.org/wiki/Mycoplasma_pneumoniae what I would like to know especially is if Mycoplasma and Mycobacteria are the same microbes based on the Wiki I think not? http://en.wikipedia.org/wiki/Mycobacteria I had always thought that some researchers were suggesting Mycoplasma are involved with Crohn's disease, but some recent reading I did indicates it is Mycobacteria, altho I am also finding documentaion that it is Mycoplasma I have found info that suggests that ticks can carry mycoplasma, altho that is not the only vector for these bacteria