Chemar

Welcome to the Forum I am just bumping your new post up for others to reply

Hi it seems you had posted this twice, so I have merged the threads to keep all the replies in one place. I just wanted to add that I concur that I would not accept a Bipolar dx in such a young child!

I just want to add here that although yes, many people may have allergy related tics, it is not the case for *everyone*. There are also many whose tics are related to TS genetics, with no allergies to anything, as well as the many other tic triggers discussed on this forum. So while I absolutely agree that one should always check for allergies as a possible tic trigger, it is not the "cure" for all who tic.

so glad it all went well.....if you do a search for pyroluria on this forum you will find quite a bit of info....good that the envirodoc was clued up on that! I know of a number of families with tics, misdx TS, who suffered with pyroluria. There are also past threads re mold (that is how it is spelled in the USA so search both mold and mould)

Hi Noting the improvement with the antibiotic and that the "bad behavior" is more bothersome than the tics....did you ever have testing done for infections? eg maybe the dx is PANDAS/PANS (PITANDS)

If your experience is anything like ours here, you will find it much easier to communicate with the enviro doc than the neuro. Don.t be surprised if the neuro negates any of the tic trigger discussion and calls supplements and other modifications for tics "quackery" and just gives a TS dx with offer of antipsychotic meds to treat the tics. Hopefully, you experience will be better....... Enviro docs tend to take a more holistic approach and are usually very aware and educated about how what we eat and the environment around us can impact our health. I would be sure to let the doc know any potential triggers you may have noticed. Hope all goes well

That was why I asked in my first reply if your children had strep history. You may want to post on our PANDAS forum to get more info. There is now a more specific test available called the Cunningham Test but not yet in all states. Usually doctors will do clinical history, strep cultures and also check to see if there are strep antibodies in the blood. Other infections (apart from strep) can also mimic the symptoms of TS The Cunningham Test is more accurate from what I understand Here is a recently updated thread about the Cunningham Test http://www.latitudes.org/forums/index.php?showtopic=4834 There is a link to the lab that runs the tests in one of the more recent posts

Daily dose of 300 mg of magnesium is generally recommended for kids with tics who are under 12 and 500 mg for older, or heavier kids. I am not sure what that equates to with Natural Calm, as we would use that more as an evening relaxant and had one teaspoon in a cup of warm water. I don't have a canister here at work to check the dose equivalent I don't think apps per se have an impact on tics...it is generally the flicker effect from the screen as well as the sound frequency for some. Try getting a daylight bulb and have him only use his ipod when the light is on, preferably shining over his left shoulder, and see if that helps.

Hi I never restricted my son playing his games as I knew that they actually relaxed him, and that was a lot better than the stress for his tics, or for him to feel punished for ticcing!!!..what we did agree on was to try avoid the very "explosive" type ones that had a lot of flash and flicker. The use of those daylight simulating light bulbs really is a big help in reducing the flicker effect. Morton has a new magnesium sulfate lotion (Epsom Salts Lotion) that is great for rubbing into the area where tics may be causing aches etc...so rubbing a little in around the neck area may be very helpful in both soothing the area but also calming the tics there! I found it next to the Epsom Salts near the pharmacy section at WalMart. It has some other ingredients in the lotion, but it can still be of great benefit especially in times of waxing. Please remember that tics are not terminal! The more you try to relax and not let the kids feel stressed about them, the easier it is on all of them. People with tics still live full and happy lives Yes, of course you should do all you can to try to help keep the tics as non interfering in their lives as possible....but not to the point where they feel their tics are causing you stress and so psychologically they feel "bad" because they tic....that is totally counter-productive in helping them. I know it is a difficult balance to maintain, but from experience I also know it is *essential* for the wellbeing of the children, yourself, you husband...indeed for your family.

Hi glad your older son is doing better. If the twice yearly flare is seasonal, it may well be an environmental allergy trigger. I am assuming the kids have not had or been exposed to strep or other infections prior to the tic flares? Tics usually begin to lessen around 18 not 13...at least that is my experience and knowledge? but there may be more recent data out that I am not aware of? Do remember that a child can see the removal of the games and computer as punishment and you don't want him feeling punished because he tics! Screens and games that have reduced flicker seem to reduce or eliminate the triggering, and using a daylight lamp in the room makes a BIG difference too. It is good you are seeing an environmental physician soon.

We like the Thorne Research multi It comes in different formulations (with and without iron, copper etc) and also in a children's formula. It is usually only available through licensed health institutes, but iHerb.com also sells it now, and for better prices. You really should check with a physician on the taurine dose. My son was around the same age as yours, but heavier, and the doctor had him on 500mg taurine daily

ps there are also those smaller above ground pools where one can frequently change the water or use salt purification so that may be an option too, especially for a young child? You could get one that is deep and wide enough for swimming perhaps...they come in many different sizes.

Here in Florida, lake swimming is sometimes hazardous due to amoeba and bacteria. Many kids with tics seem to be chlorine sensitive, but not all. Some people had success with bromine or salt water pools, but those may not always be available. My son was so sensitive to chlorine (increased tics as well as hives) that he just stopped swimming in chlorinated pools altogether. It just was not worth the outcome. He has been able to swim in the sea without problems but does shower asap afterward.

Could you add that link to the Helpful thread http://www.latitudes.org/forums/index.php?showtopic=3928

Hello and welcome to the forum I am just bumping up your post for others to see and reply

I am not saying your son does not have "real" TS Cara.....I always mention the possibility that the tics are caused by something other than TS as often kids with tics are misdiagnosed as having TS when in fact their tics are caused by something else. As genetic research advances, diagnosis may become more than just clinical but at present, it is a family history along with the presence of BOTH motor and vocal tics for one year that usually results in a TS dx.......however, many doctors are still sadly not yet clued up on the various other factors that can cause tics, and so they tend to give the TS label too quickly imo.......our PANDAS forum has many members whose kids were being treated for TS with no real relief, when in fact they were suffering with infection triggered tics...once they were put onto the correct antibiotics etc...things began to improve. And we have many other stories of tic relief finally coming when it was realized that it was not TS but something else triggering them. Having said that in response to your comments on anxiety............that is a MAJOR tic trigger and so yes, the increase in your son's tics may well coincide with all the attention being focussed on them causing him stress. I would also suggest having comprehensive testing done re his food intolerence as if I recall, you had those done with hair analysis? I know hair analysis can yield some really accurate results on some things but I wonder how much so on allergies etc....it just may be worth having an allergist do the specific testing to know for sure, and so know that whatever dietary changes you are making are truly necessary.

Cara, are you saying that you are no longer seeing the improvements you reported with the NAC? As I mentioned before, you do need to be careful of what ingredients are in the "natural supplements".....some companies add fillers and "other ingredients" that can be tic triggers! You really also need to be cautious of continuing to change and try too many things too soon. Sometimes you just have to wait a bit to see how things are progressing. But if you keep adding new things all the time, you will just confuse the child's system, as well as yourself as you will have no clear picture of what helps and what does not re BonTech, we have never used them but I did base my son's original program on Bonnie's plan (before she had Bontech) Summarizing reports we have had here over the years, many people do well on BonTech IF they in fact have TS. It is designed for TS tics so if a kid is ticcing for other reasons, it may help but also may not as it is specifically formulated for TS. Also, some people have reported an increase in tics from the BonTech...varied reasons suggested. Those trying the fish oil supp again have varied responses, just as noted with other fish oils that some TS kids seem to be sensitive to, even when they are fine with fish. It has been widely reported here that some kids show an initial increase in tics when starting BonTech, but then level off and start to show great improvement...again these are kids with TS

The Thorne multi actually has an excellent level of B vitamins imo Omega 3 supplement really is important unless he is getting a lot in his diet but there is that potential tic trigger for some kids with TS from supplemental fish oil....my son likes freshly ground flax seeds sprinkled on food and also eats a lot of salmon. If things are going well, you may want to wait a bit before trying anything else like taurine as not everyone responds well to it. jmho

We like the multi by Thorne Research best...least expensive via iherb.com They make assorted combinations as well as a children's formula

Hi sorry you dont have any replies.... We used Candida Clear but my son was older than yours. We combined a good diet as per the book The Yeast Syndrome by John P. Trowbridge & Morton Walker Plus natural kefir as a probiotic, along with raw extra virgin coconut oil by Nutiva as a natural antimicrobial (also Monolaurin, which is a lauric acid supplement from coconuts) Maintaining probiotic health and daily coconut oil seems to have kept candida at bay for many years

If you do a search on NAC here you'll find some past threads on it... some have it spelled out as N-acetyl cysteine Some had success and some not (us in the not group) so again showing what works for some may not for others. So glad that you are seeing some improvement with it Cara

bumping up for responses

(((Cara))) It will be ok Sadly, most of us know the "not happy with neurologist" feeling! Personally, I would avoid clonidine, though I know some have had success with small doses of it, but also depends on the brand of clonidine. You will find a lot of helpful info for getting school assistance as TS is classified a disability for education under ADA Just remember that even if it is TS (and no, the neurologist cannot be 100% sure!) there is still an enormous amount that you can do to make things better. But just take it a day at a time, try to keep a journal so you start to understand triggers etc. We are all here for you.

Cara I am going to share something with you that was a big wake up call for me about 14 years ago when my son's TS tics began to manifest big time......... I was in a very "woe is me, woe is my son" phase and I know I was making things worse for all of us as my distress was causing him stress and so intensifying his tics and OCD etc etc etc....... Someone wisely told me to "get a grip...it is TICS, not cancer or some other terminal illness!" They suggested I go read a forum that was for parents whose kids had terminal diseases ....and how those parents were treasuring every moment they had with their kids.... It left me realizing that I was allowing the tics to dominate our lives, and steal precious time from my son and our family. Once I got my own emotions and reactions under control, I saw the first real improvement in my son. It also gave me the ability to begin to find the treatments that have so helped him over the years, because I was focused and not in a blind panic all the time, trying everything that I heard about without really knowing what i was doing! Please know I do understand how you are feeling....but your son having tics is NOT the end of his life, or yours. My son is now in his 20s and his tics are an almost negligible aspect...and have been for some time now. So know there is much reason for hope and yes, this too will pass. As my avatar shows, there IS light at the end of the tunnel...keep your focus there and not on the darkness. That wise friend also told me this...which I have in a thread here.(click to read) It's OK To Tic

bumping up for answers from other members. Sorry your post was delayed in showing.