Chemar

I posted this on another thread but for those of you using Tagamet, do be aware that strange pre-sleep hallucinatory type "dreams" can be a side effect in some people my son had this some years ago and it was very alarming, till a pharmacist friend told me of this tagemaet side effect. he was on Tagamet at the time to help Crohn's symptoms stopped the tagamet and the ick "dreams" ceased immediately

hello Giula many people are reporting that this is one of the worst allergy seasons in years so yes, it may well be what is causing the throat clearing do you have a hepa filter in his room? that can help a lot throat clearing is a vocal tic, so I guess you may consider trying L-carnitine as that often helps with vocals, but if you do start at lowest dose and see how he reacts to it as some people are hyper sensitive to any amino acids. Same with taurine does he take epsom salts baths? we consider them a major help when tics increase also, have you ever checked if he may be sensitive to the fishoil? if he has been taking it for a while with no extra tics then likely not, but some people with TS (including my son) tic more on fishoil and do better with flaxseed oil, fresh ground flaxseeds and high omega 3 fish(wild alaskan salmon--never use farmed or canned fish!) also maybe check at school in case they have new paint, carpet or woodwork in his classrooms, fragrance etc. all those can be triggers hope that may give some pointers

lol man meal indeed Jens, be careful of all those amino acids too...some, like tyrosine and even phenylalanine, can make you tic more because they are dopaminergic. also things that boost your androgens make you tic more because androgens are also dopaminergic (thought to possibly be a reason more guys than girls manifest TS)

I dont know of that study Jens but I do know that Bonnie Grimaldi's research was enough to convince me to start giving my son magnesium and B6 (in the form of P-5-P) years ago and is in part what I attribute to him having stabilized so. the B6 not only helps with tics but also with OCD etc I dont know if you have ever looked at Bonnie's website http://www.bonniegr.com where you can see more on her research as well as the ingredients in her successful Bontech supplements for TS I based my son's treatment plan on hers. I document what helped him in a thread here, which you can access via the link in my signature

Jens, that doesnt sound like a balanced diet at all! people on very low carb diets also tend to suffer with more mood and depression problems high fat diets are unhealthy! I must say if I ate what you had for breakfast I would likely be sick all day lol honestly, a balanced diet with good proportions of wholesome foods is best, and only eliminate that which you are allergic to

Melanie just a word of caution on Tagamet from our experience....my son was on it in the early days of his Crohn's diagnosis. a short while later he started having very strange pre-sleep hallucinations...very scary and very real feeling we were extremely puzzled until a pharmacist friend told me this is a Tagamet side effect that can occur in some susceptible people now that doesnt mean it will happen to everyone but....just be aware of it if anything similar should begin

excellent! and most definitely needed... we will be signing it as my son has realized that even tho he has never tested allergic to corn, yet it seems corn products aggravate his Crohn's. We have been astonished at how much corn is being added to food in disguised forms!! thanks for the post

Hi screaming/shrieking/yelping etc is a tic and so is involuntary probably the more he tries to control it the harder it gets to keep it in...as with all TS tics he is likely suppressing during school and so having to let it out at home. having to suppress more at home would be causing extra stress and so the tic intensifies! Kids with TS really need to feel comfortable to release their tics at home if possible maybe try to find some games he can play to let him yell and release? Cognitive Behavioral Therapy can be helpful but at his age, honestly, I think may be too early there is an amino acid supplement, L-carnitine that many of us have had success with for vocal tics, but as with all supps,and if he is also on meds, check with his doctor also a good idea to keep a log to see if he is eating anything or coming into contact with any environmental triggers when the screaming intensifies!

Hi Melissa yes, poor handwriting is something that does seem to often occur with TS, especially when compounded by OCD as well as integrative stuff my son used keyboards in school (including an Alpha Smart in elementary and middle school) and had special accommodations on his 504 plan for handwriting, even tho he was also in advanced and gifted classes. he got some help from OT, and seemed to struggle more with cursive than printing, so he prints. The OCD of writing over till it was "just right" was by far most bothersome, tho sometimes he would also tic more when focused on neat writing and the jerking would mess it up! one can help this up to a point where it becomes too stressful and then accommodations for it was part of the syndrome are usually the best option here is some helpful info http://www.tourettesyndrome.net/education.htm http://www.tsa-usa.org/educ_advoc/education_main.htm

be sure to keep a log on everything and maybe also read up some on our PANDAS forum to see if anything there makes you feel an "aha!" sometimes more than one thing can be triggering things and yes, an infection that is still lurking can mean a higher susceptibility to other triggers like the flumist!

I love it too a cup a day is usually what is recommended, but I know some people do more. it may just have a too dramatic effect on his digestion if he has too much initially I have also learned that even lactose intolerant people can use kefir!

I absolutely agree that one should treat this as preliminary research info and be very very careful about trying to alter histamine levels without knowing for sure whether one's child already has high or low histamine levels and or tolerance!! Remember this gene mutation was found in one family with TS, and the control subjects did NOT show it, even the 700+ ones who also had TS!! for some kids who tic more with dairy, or have inflammation from it, clearly adding milk is a big no no same with kids who already have hyper allergic issues...increasing their histamine could be an extreme trigger!!

I make ours with a tablespoon of epsom salts dissolved in same of hot water and then mixed into a bit of aquaphor cream. I make it fresh the Kirkman one has additives that I try to avoid, plus the $ makes homemade a better option

congrats on getting more exposure for PANDAS Deb

that may be why the B vitamins are so helpful for the majority people with TS, especially B6 for neuro stuff in general I think with this, depending on that unique genetic and biochemical "make up" of the individual, things are going to be variable again, but it sure does open up very interesting avenues of research, and add some more pieces to the puzzle of how the functions of the genes, immune system and Neurological stuff are so closely connected.

thanks for following up on this Laurensmom...lots more to digest there with that extra info and yes, that could well explain the paradox!

welcome Grace and thanks for posting this info It is also being discussed on our PANDAS forum where the comments may put it into perspective http://www.latitudes.org/forums/index.php?showtopic=8095

Hi I dont know anything about strep rash so cant comment on that, but I know candida albicans can also manifest with a similar looking peri-anal rash, that also is first red and then can dry and peel. the pics here are graphic, sorry...but this shows a variety of ways candida rash can manifest http://emedicine.medscape.com/article/1090632-overview I guess the only way to know for sure is to culture from the area? here is a case of a child who was dx with candida when in fact it was strep http://findarticles.com/p/articles/mi_m068...6/ai_n27480836/

it is an interesting study but makes me wonder tho on how widespread this could be? I know of a number of TS patients who actually take benedryl (anti-histamine) for allergies and feel it helps reduce their tics, as well as so many TS people who seem to also have the seasonal allergies, that usually indicate high histamine, yes? I am a biochemistry dummy (as Kim can verify ) so maybe I am not understanding?

if I am reading that correctly, this mutation was familial and the other TS patients did *not* have it???? so I am not seeing the "clue to Tourette Syndrome" there???? unless I am missing something?

I am very wary of psychiatric meds for kids with developing brains and not all that much research on their age group with these strong medications. Some of them even carry black box FDA warnings about the potential for serious side effects in young people I also tend to have negative bias against them because of the very serious side effects that my son had from them from our experience, most psychiatrists tend to just prescribe drugs, whereas behavioral psychologists work with the child to develop coping skills. My son benefited greatly from Cognitive Behavioral Therapy, tho it did take me "interviewing" a few therapists before I found one that was a good fit, and that was quite by chance when he went to see another doctor. as you are still checking into what is causing the regressive behavior and if it is just related to the Lyme or possibly a co-infection etc., I would agree with following your doctor's lead on waiting before adding those strong drugs into the mix! and rather work on finding the causes of the behavior, especially checking re possible strep co-infection. from everything you have posted before on the TS board, it sure seemed to me the Lyme sounded like it was the trigger for the neuro-psych symptoms he is dealing with, and a co-infection may well have pushed things over the edge to cause that exacerbation if it is any consolation, when my son was in crisis and rushed to ER, I too was bullied there about him needing the psych meds to "have a normal functioning life" ............and that is how we started down that disastrous path that directly caused the worst year of his life ....... Thank goodness your regular Doc already feels it wise to wait so he is on your side. I had them coming at me from all sides (pediatrician,neurologist, school and psychiatrist) and I was so desperate to help my son, I caved to the pressure and will likely always beat myself up over making that decision, even tho I know I was only trying to help him. But I had no peace over the decision and felt unease when they brushed aside my concerns over the potential side effects.................... so from one mom to another, trust your instincts on this!

my son doesn have B12 shots but he does take 1000mg of methyl B12 sublingual tabs daily, first thing each morning if he misses it, brain fog and a very weird irritability set in quickly not sure about the study and the cobalt stuff re the injected form, but I sure know for my son methyl B12 is absolutely essential!

yes there is that case history documented in Sheila's book, and there have been parents pass through the TS/tics forum over the years who have discovered that candida "yeast" was the primary trigger for their kids tics and in some cases, other neuro issues as well I know for myself, and our family, as well as others I know, often "mysterious" ailments resolved once candida was brought under control. I like the book The Yeast Syndrome by Walker and Trowbridge do you know of the very unscientific "spit test" for candida overgrowth? a positive is usually pretty conclusive but a negative may be false I am told, and so other testing can be done to verify(some do stools, some do bloodwork or both) http://www.adhdrelief.com/CandidaTest.html we have personally found diet (that book I mentioned has details on a phased anti "yeast" diet) and Candida Clear good to control yeast infection, while loading up on the good gut flora from kefir and plain organic yoghurt Melanie, whenever one has a microbe that gets killed off, there is likely to be a "die off" reaction as toxins are released bmom, symptoms of candida really do seem to vary from person to person, and I guess also relative to whatever other issues they are dealing with. Often people have no idea that they even have a problem with it a diet high in sugars, carbs and alcohol usually "feeds" the yeast, and it is common with frequent antibiotic use, if one doesnt also use suitable probiotics (we prefer the "live" cultured ones) People with digestive disorders seem to also be more susceptible to it

we are then back to my original point that if a child had undetected strep one would surely expect at lease some antibodies, albeit that they might not be elevated anyways, I really dont want to highjack this thread by going back and forth on this my point was made only to suggest that just because a child has no markers whatsoever for strep, their parents should not dismiss the possibility of them having some other microbe that triggered their neuropsychiatric symptoms ie that a PITAND diagnosis is still possible even if there is nothing to indicate a prior strep infection