Chemar

Hi Bonnie I do agree we all have our own sensory likes and dislikes etc....the difference tho with SID is that it can interfere with the quality of life, so making it i very real disorder rather than just individual quirks kwim my son's OCD would kick in big time when there was the issue with the seams of the socks having to be "just right" in the way they felt or he "could not" wear them etc etc a high pitched squeal of static on a microphone gives me the heeby jeebies, but for him...it once sent him into major overdrive clinical SID really is best dx and treated if it is interfering with regular functioning IMHO

hi San yes, if you do a search here you will find a number of threads related to the topic of SID many kids who have neurological issues also seem to have this dysfunctional stuff going on in their sensory systems things like the sock seams, and labels at the neck used to drive my son into a frenzy, same with some smells, and deep bass or high treble and of course the flashing, flicker and fluorescent light trigger we did find overlaps occurring when the sensory stuff became kinda morphed in with tics and OCD my son had helpful occupational therapy when younger and learned some good skills like skin brushing and other sensory modulating things there is an excellent book and website The Out Of Sync Child http://www.out-of-sync-child.com/

bumping up for newbies (and some oldies too )

I honestly dont know Justine as these things have advanced much in recent years

hi Lisa taurine is an amino acid and yes, it does seem to help people with TS, especially when combined with magnesium my understanding is that taurine stabilizes the neuronal membranes, hence making them less "excitable" to dopamine however, some parents have remarked that they saw a worsening with taurine, very possibly because their kids are not TS. But it is always a good idea to supplement only when something is deficient, rather than to just add it as too much of a good thing isnt good anymore! we supplemented with 500mg taurine each day

Neuroscience Labs does neurotransmitter testing https://www.neurorelief.com/index.php?optio...9&Itemid=74 there may be others doing it as well

I do wonder as well what happens to kids who seem to be triggered after they have had vaccinations I know there is still controversy on the role of mercury and other adjuvants in vaccines on neurology, but what about the actual onslaught of the vaccine itself on the immune system in a susceptible (genetic neuro disorders or already "microbe infected" child) ie the immune response generated by the vaccination may trigger something to go "wrong" in a suceptible child, especially when a number of vaccines are given simultaneously? that article re the molecular mimicry is very interesting Vickie. Thanks for posting that.

my son has Crohn's Disease , genetic Tourette Syndrome/ OCD stuff, likely PITAND as well before he had the Crohn's dx, he was on all kinds of immune "boosting" stuff like pycnogenol, grape seed extract etc as that was part of our natural protocol for his TS after they found he had Crohn's, which, like PANDAS, is auto-immune, we were advised to avoid the big gun immune boosters and aim for immuno-modulation instead . The conventional treatment protocol for Crohn's is immune suppression, but we did not feel comfortable with that after we carefully looked at the potential side effects, as well as the possible implications for his overall neurological health, which was finally in a more stable place, after extreme waxing and waning of his TS/OCD for a couple of years after onset. I had to learn to distinguish between a hyper immune system and auto-immunity. It seems to me that in the former, the immune system is over reactive to any little "intruder", often the case with allergic people...... but in the latter, it sees the person's own cells as the enemy! and mounts an attack on itself. ...in addition to hyper reacting to all real intruders! I think in autoimmune individuals, the situation needs very careful balance, hence the immune modulation recommendation, and that working to also correct the root cause of those cells sending out the wrong "message" to the immune system, should be part of the healing process. Stopping inflammation seems key here too I think. our acupuncture therapist uses a combination of specially placed needles, along with a biofeedback therapy to aid in the modulation. I was skeptical at first, but I have seen firsthand how positively my son responds to the treatment when he has had Crohn's flares.

the omega 3 essential fatty acids in fish oil are also known to be a beneficial supplement for those who have neurological problems. there is a very good overview and discussion of essential fatty acids here http://neurotalk.psychcentral.com/showthread.php?t=6092 fish oil seems to be the best source for omega 3, which is most desired when inflammation is a problem as yes, as SF Mom pointed out, it is anti inflammatory as well as having anti viral properties just a word of caution again for those with TS some people (not all) who have Tourette seem to tic more when they get their omega 3 from fishoil (even tho they seem able to eat fish!) we have a number of anecdotal reports of this on the TS board, including that of my son I posted a link to a study that suggests this may be gene related? http://www.latitudes.org/forums/index.php?showtopic=7098 for those people who tic more on fishoil, flaxseed oil is a good alternative source of omega 3 people with inflammatory conditions like PANDAS should avoid high omega6 as that promotes inflammation whereas the omega3 damps it

Santi some people do experience very weird symptoms on prednisone the MS patients refer to "Roid Rage" my husband has Tourette, and as mentioned before, people with TS can have pretty negative reactions to extra steroids. When my husband had prednisone he freaked out and I am not exaggerating. It had a very dramatic adverse effect on him that got worse with each day of the steroid burst period and had long lasting implications. But he has TS and so was likely reacting because of that impact on his system I know for some people tho, it has the ramping up effect and then things get much better so I hope you will soon see that with your son

although yes, that is what seems to happen for PANDAS kids when they are exposed to other microbes........ yet for some kids there is some other initial infection other than strep, that triggers the whole series of PANDAS-like symptoms=PITAND. These kids may not have had a strep infection or exposure, but instead have had the initial trigger from that other microbe, and they too appear to remain susceptible to exacerbation when further exposed to any other microbes.

there was another interesting thread that discussed this as well http://www.latitudes.org/forums/index.php?showtopic=6925

just to clarify and avoid confusion: PANDAS usually only refers to the strep induced symptoms when other microbes, like Mycoplasma etc are involved, then it is usually referred to as PITAND, or PITANDs, (and sometimes PANDAS-like) PANDAS = Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus PITAND = Pediatric Infection Triggered Autoimmune Neuropsychiatric Disorders

Hi Lynn I am a self confessed biochemistry dummy so I honestly dont know the pathways of taurine and carnitine and how they would relate to that of corticosteroids but if your child also has PANDAS then it may be that the supps that sometimes help with TS (as taurine and carnitine do for some) are having adverse effects because of the additional complications that are PANDAS related amino acids are strong stuff and I always think it wise to be very cautious before adding them unless there is clear evidence that they are needed

I was so pleased to find this again!! it used to be on geocities but then the disappeared, and today I found it on a new hosted site!! Jones explains things in a way that is so easy to understand, and tho some of what he writes is his own theory, yet he provides many references to back up his info http://www.tourette101.com/index.php the section on The Chemistry of TS is especially interesting http://www.tourette101.com/chem.php

glad to hear you are seeing an improvement after the pred It does seem to help so many people with inflammatory and/or autoimmune problems I have friends with MS who would not be able to cope without it I have posted cautions before for anyone who knows they have Tourette Syndrome to be extra careful before doing a steroid burst, because corticosteroids are dopaminergic and people with TS tic more when dopamine is stimulated I came across an easy to understand piece at tourette101 discussing, amongst other things, why cortisol may have negative effects on people with TS to read more please go to http://www.tourette101.com/chem.php

sorry to hear of the flare up this is apparently one of the highest pollen seasons on record from what I have heard so seasonal allergies acting up for many people for those with predisposition, it can really ramp up other things too when their allergic reactions get the immune system in overdrive

nope...none got lost...most of the earliest PANDAS related posts are still over on the TS/tics forum and just were not moved over here with the more recent PANDAS threads when the new forum was created.

I saw this elsewhere and thought it might be of general interest as I know prednisone is used for the steroid burst it is just basic information for those interested, compiled by an MD and has more of a long term use focus, but still outlines the overall effect of prednisone in an easy to understand way http://www.gihealth.com/html/education/drugs/prednisone.html

Andrea, forgive me if you have already mentioned this but there is no evidence that your child has Tourette Syndrome, correct? that is the only time when one should discuss it more carefully with the doctor as we were warned not to use steroids with TS as it can trigger more tics, sometimes very intensely as my TS husband learned the hard way. (I believe it is due to the dopaminergic reaction of corticosteroids but someone with more biochemical knowledge may understand it better than I do) if no TS then, apart from the common side effects that can occur on steroids, it appears very beneficial in many autoimmune conditions, including PANDAS

just wanted to add that Herxing - herxheimer reaction is most commonly known as "die off reaction" for those who use that term and may not realize that herxing is the same thing TS= Tourette Syndrome Rx= precribed/prescription DAN= Defeat Autism Now doctor NP= naturopath

http://www.latitudes.org/forums/index.php?showtopic=7775

remember the allergies are likely just part of the overall problem, adding their influence on his immune system/inflammation it may still be worth doing that strep test, and also checking into other things that may have caused the flare I do hope it stabilizes soon. I know only too well what it does to us when we see our child flaring and feel so helpless. Take care of yourself too!

yes, TS kids can show quite a flare at this time of year when they have allergies. running hepa filters, especially in their rooms can help as can running air conditioning 24/7 some of the parents seem to find that "little Noses" product good it is very possible that he has been exposed to strep at school and that may be the main culprit again. just anything you can do to lessen other triggers is a good idea, and you seem to already be addressing the allergies so possibly they are not a major contributing factor at this time I remember one time when my son had a major tourettic OCD flare every time he went to school....turned out they had just done a pesticide fumigation and some painting and new woodwork, plus new carpeting in his classroom....all known tic/OCD triggers for him. Like many kids with neuro disorders, the combination of his sensory issues plus multiple chemical sensitivity, make him react big to sometimes little things

does he have any seasonal allergies? In addition to whatever may be causing the exacerbation, if the immune system is also reacting to allergens, that can cause a flare of so many things in kids who are already hypersensitive to inflammation and immune stuff. For TS kids that can mean increased tics and OCD. Not sure if it is the same for PANDAS kids but just thought to mention it.