Chemar

I have heard coromega is palatable fishoil for kids...not sure if that is the same as the Nordic naturals, which has also had good reports here I believe. I would suggest you follow the dosing recommended on the label. usually under 12yo is suggested 1/2 adult dose, but often younger kids need more if dealing with neuro probs

I am not sure where the threads are now, so you can try a search, but in the past we have had some discussions here on tips to get kids to be able to swallow pills...we found using a straw to take a drink while swallowing helped when my son was younger. there is something about that sipping action from the straw that just helped him get them down better than when taking a drink straight from the glass

Hi Alan yes Omega 3 is very important for everyone, but especially for children who have neurological problems some people have a sensitivity to the fish oil, but if your child does not have that sensitivity, then fishoil really is the best source of omega 3 flaxseed oil is next best we found Chris, why not just give flaxseed oil capsules instead of the oil itself? that way no taste is involved and it is a lot more cost effective than the flax fusion

They (Shands/Dr Murphy) had my son start at the lowest dose 1 mg per night as he was known to hyper-react to meds. Even that low dose had a big effect on him and he hated it. Stopped immediately as we have learned by bitter experience how the cumulative effect of any drug that he reacts negatively to can seriously mess with him we were using it for the endorphins to try to stop some serious injurious tourettic OCD stuff. eventually we tried D-phenylalanine SHORT TERM and had an excellent result. I stressed short term as my son has Tourette Syndrome and phenylalanine is dopaminergic (like steroids also are) and people with TS need to try to avoid things that increase dopamine I wanted my son to try the transdermal when first dx with Crohn's but he refused as the very name reminded him of the oral reaction he had had 5 years prior. do remember tho that my son does react negatively to many meds , likely due to chemical sensitivity/intolerance

One of our members, Caryn, has a great website with gluten free recipes & lots of info http://healthy-family.org/ she also has a book out next month called "Cilie Yack is Under Attack" a Novel for Kids with Celiac Disease There is also a FaceBook page

my son was given naltrexone in low dose tablet in 2001 and did not have a good reaction. it was supposed to help the tourettic OCD he stopped it immediately I do know of some people with other autoimmune disorders tho who have had great benefit from it

Hi unfortunately we dont have delete in our minds but honestly, try your best to do that and dont watch any more of those types of shows. They are not representative of the whole and also neglect a vast wealth of anecdotal and other treatment options That is not to negate the validity of the stories told. but it does give a very limited perspective! my son manifest very very severe TS around his 10th birthday and we were filled with doom and gloom by those types of extreme or "hopeless" stories. he is almost 21 now and doing great and that is no thanks to conventional medical opinion or treatments! most people with TS have mild tics, never need treatment and tics resolve in their late teens to early 20s others, like my son, may have a lot more severe symptoms but still manage to find effective treatments (in our case diet, supplements, accupuncture etc) there may not be a "cure" yet! but there most certainly is hope to find ways to make things much much better once you determine what the best fit is for treatment

Hi yes TS can start abruptly. Perhaps it is triggered....but sometimes the trigger is not always as obvious. My TS son had what seemed to be a very abrupt onset at age 10, but in retrospect, we realize he actually did have tics and OCD when much younger, we just did not recognize them as such. There is a family history of TS and yes, someone who has TS can get a strep (or other) infection and have their tics and OCD exacerbate, or be initially triggered TS and PANDAS are *not* mutually exclusive As you have a family history of TS, it is very likely that the genetic disposition for it is there in your child Please do be careful tho of allowing yourself to be convinced of a diagnosis simply by what others on the internet say. Their observations may be accurate, but only a qualified and experienced physician can diagnose PANDAS. we used 5HTP successfully for OCD when my son was younger, but I honestly did not feel it had much effect on the tics directly, beyond what would be expected by calming OCD when my son tried it again some years later, he did not react well to it. It is a strong supplement with direct impact on the brain so you are wise to be cautious. Many people prefer to start out with supplements that have less potential side effects...magnesium for tics (most here like the Natural Calm) products and things like Inositol( a B vitamin) for OCD I have a link in my signature below on what we have done over the years to help my son Just remember, you will have lots of advice, suggestions and experience coming at you from many of us. Just take things one day and one step at a time as otherwise you may find yourself overwhelmed and making no progress.

I guess the important question is how is he doing ? stress is one of the worst triggers for tics etc and so if he needs a break from testing...then I would think it wise to take that break while you look at what you have learned from the results and strategize on the next move. I do think sometimes one can get so caught up in testing that it makes things totally overwhelming and no progress is made hopefully others with more understanding of your testing will be able to give input. what did the DAN have to say of the results?

Hi in addition to strep, tics & other neuro symptoms appear to also be triggered by things like clostridium, staph, Lyme disease microbes, viral infections (eg epstein barr), mycoplasma, Candida infections, mold exposure and other fungal triggers etc. Even things like cold and flu infections can exacerbate symptoms for some

Oregano Oil is also excellent and we have used it together with OLE, but in lower dose. I do see more info on OLE than the oregano oil in terms of effectiveness, but that could just be the marketing of the OLE products. The oregano oil is very highly regarded in folk medicine a word of caution!!!! oregano oil itself is very very strong and can seriously burn one's mouth, throat etc either use the capsules or a formula that has it in (eg the NOW Candida Clear) or use ony one or two drops diluted in water and well mixed.

Hi thanks so much for explaining your story! That will be very helpful for others who may be dealing with mold induced symptoms I am not sure if you have noticed that we also have forums here for infection induced issues, PANDAS/PITAND & the new Lyme disease forum http://www.latitudes.org/forums/index.php Personally I feel mold induced tics and other symptoms may fall into a PITAND spectrum, as mold is "microbial" Good to hear you are all on detox treatments Dont give up on supplements for your daughter...it just may be that she is sensitive to one or more of those ingredients and needs a more uniquely formulated regimin to meet her specific needs. There's a lot to learn here about regaining health after something has triggered tics have you tried the magnesium supps like natural calm to drink, and epsom salts baths? that is something you could consider starting with as you determine what other specific supps etc she needs

yes

Hi some people do seem to have this sensitivity to BonTech, although the majority, like your son, do very well on them has your daughter been evaluated ever for possible soy allergy? it is likely that or a sensitivity to one of the other ingredients do both children have TS?

another natural antimicrobial worth looking into is made from lauric acid aka lauricidin found in coconuts. We use the supp called MonoLaurin...lauric acid is also found in breast milk and is one of the ways the mother begins to impart protection to the newborn naturally. I read recently that they are even showing promising preliminary results with HIV/Aids infected people using lauric acid when one starts looking into this, it is astonishing how many plants products have antimicrobial properties, never mind raw honey. My son has been taking lemon balm tea for OCD, and discovered from his research that it also has antimicrobial properties. He currently has the Crohn's, TS tics and OCD under control with primarily diet and some specially researched supplements

Hi olive leaf extract is believed to have potent antimicrobial properties, as have a number of other natural substances. here is some very general info on it (there are not many actual scientific studies, much "evidence" is anecdotal http://healthlibrary...chunkiid=111710 I thnk one should be careful *not* to substitute it for a prescription abx in severe conditions where immediate eradication of an acute microbial infection etc is needed, but IMHO using it, instead of rx abx and along with other antimicrobial diet and supps, can be very beneficial in long term or periodic need for abx related to chronic infections. We use it successfully, tho I should mention that one does need to drink a lot of water when on it!

hi some people, like my son, just seem to be very intolerant to chemically made substances, which most prescription meds are. so where my son's reaction to the flagyl could have been herxing? or abx specific reaction, we dont know, only that he did better off it.....we believe he has multiple chemical sensitivity, even tho he has never had (as far as we know) any single massive chemical exposure that some claim is the needed trigger for that. but he seems to get serious side effects from many medications over the years, and so we have had to find natural substitutes for most everything, which he responds well to, and that seem to aid the problems for which abx are usually prescribed

yes, his tics increased, and he also felt it had a negative effect on OCD it could have been some kind of die -off reaction, but he was having acupuncture & biofeedback to help that and it did reduce the effects much, but he noticed a definite improvement when he went off the rx abx and on to the natural ones in foods and supps

my son was given flagyl when first dx with Crohn's he did not react well to it and stopped after a few weeks (he was supposed to be on 3 months off 3 months)

the tongue numbness,hanging is usually a symptom of Tardive Dyskinesia, one of the dreaded potential side effects of haldol and other neuroleptic drugs. I am surprised that they put your grandfather on haldol when he had parkinson's tho, as with PD they need more dopamine, whereas with TS they need less. Haldol reduces dopamine, so would make parkinson's worse! after the horrid side effects my son had from haldol, I am very relieved to hear the doctors warned you against using it for your child my husband had a horrid reaction to clonidine. he is also TS starting supplements is best done slowly so starting with ts-plus alone will give you a better idea of whether it is helping or not. you can then add other things IF needed.

to read more http://www.npr.org/t...995&sc=fb&cc=fp and here is the story on Mr Triplett http://www.theatlantic.com/magazine/archive/2010/10/autism-8217-s-first-child/8227/

I did not watch this show (intentionally) so cannot comment on it but I do agree that it is very possible to have both a TS AND a PANDAS or PITANDs dx. and am not sure why these are sometimes being presented as mutually exclusive? kids with TS genes do also get infections............

That is interesting then, as if this had been "just PANDAS" I would have thought the steroid would have helped. the fact that he got worse is something a doctor really should evaluate as to why. if he does also have Tourette Syndrome, in addition to the infection related symptoms, then that could be why the steroid increased the tics. I dont think you need to have either TS or PANDAS, but that it is very possible to have both! Kids with TS predisposition genetically do also get strep infections and other microbial stuff so can also be PANDAS or PITANDs. All that means IMHO is that the treating physicians need to work carefully to optimize treatment taking both dx into consideration we had to do that for my son when he got the Crohn's dx. Things that work for Crohn's (steroids and immuno - suppressive drugs) are not good for TS, so we decided to also take a "natural" and balanced approach to his healing there, which has been as successful as that for his TS,OCD etc

Hi Giulia I intentionally did not watch as I find that most of those kinds of productions, especially with a title like that will just be the same old stuff that keeps getting remade in different ways! what we need is a comprehensive production with balanced perspective. but so far I have never seen or heard of one, and I just get irked when I watch one's like this one sounded it was going to be!

Hi and welcome I will try to post more later, but did notice you mentioned your dad was on haldol (haloperidol?) Was this for tics? Tourette syndrome? or something else? I believe that "true" TS is genetically inherited. As to what the original cause was for those genes to mutate...well, that I do not know, but I do think that those altered genes are passed on in families, as opposed to the TS-like disorders, which can also be genetic in some, but may also have many immediate rather than inherited causes, from infection (as in PANDAS) to allergies/sensitivities from exposure and environmental triggers etc if this is in fact TS, please dont lose hope. my son has genetic TS spectrum of disorders, and he is now 21 and doing really well. I feel this is a combo of his age (it is known that TS symptoms, altho they may never fully go away, get much milder after the teen years are passed.....and the healthy diet and supplements that he is on, as well as trying as much as humanly possible to keep stress at a minimum Have you done testing for PANDAS or other infection triggered neuro-immune disorders? Sheila's book can be very helpful when one is trying to formulate a plan. http://www.latitudes.org/book.html Bonnie's vitamins have helped many. Some seem to be sensitive to them tho (possibly the soy or another of the ingredients) but most TS people seem to do really well on them http://www.bonniegr.com I have not heard anyone say tics got worse on the empower plus? I only saw one thread about it here saying tics had got better with it (unless I missed others?) I had mentioned tics could get worse with one of it's ingredients, dl-phenylalanine, which can increase dopamine levels in the brain, something that people with TS do not want as research shows that people with TS tic more when there is excess dopamine. But so far we have only had a good report on using it