tics are waxing... carmine? colours? MSG?

[Calicat]

Hi guys,

My daughter (6) had been doing sooooo well, with only the odd tic here and there. Past few days... they're coming back. Mostly a LOT of in and out sniffing, some throat clearing, the odd wink.

 

My questions are:

This is the first week at school since two weeks off, and I just found out a friend at school is sharing her coloured fruit gum thingies and chocolate treats with her at school, daily... could this be a reaction that has built up over the week? It's still getting stronger each day.

 

We started drinking pink grapefruit juice daily this week, and I just noticed tonight that it has carmine in it (the red colouring made from boiling up a bunch of special dead beetles). Anyone else had a problem with this, or is it probably not where the reaction is coming from?

 

To add to the fun (troubles), we had tacos last night, with that crappy taco seasoning mix. Not buying that again! Could that be increasing the reaction?

 

I'm going to TRY to keep her diet cleaner for a few days and see if there's a reduction. How long do you think before the system would clear, so I'd know if the colours/MSG were the problem or not?

 

She does seem to be able to have small amounts of this stuff, sometimes, without a problem. Do you think it's likely that this is a situation of too much crap just building up?

 

IF the cleaner diet doesn't help, does anyone have a suggestion on which supplement might help specifically with a sniffing tic?

 

I'm getting scared now because we're coming closer and closer to May, which would make it one year of tics, although they have been extremely mild for much of that. Would that make a Tourette's diagnosis likely? I guess I'm asking, if the tics are extremely mild most of the time, even if you have them for more than a year, could that be Tourette's? As I've mentioned before, my sister and possibly mother seem to suffer from a bit of mild OCD, even though it doesn't affect much and has never been diagnosed. Does that make a true Tourette's diagnosis in my daughter seem likely?

 

Please let me know any thoughts you have on these things, especially the Tourette's diagnosis issues.

 

Thanks in advance,

Calicat

[Tracey111]

Hi Calicat,

 

I am new to the whole tic thing, as of September. My son is 6. I can tell you that we had a poor week of eating the week prior to Winter vacation, plus no vitamin supplements. I emailed the teacher on that Thursday to see if she noticed a difference in him. She said she was going to email that day because he was so "off" all week. I noticed his tics were getting a lot worse.

 

I started back on the cleaned up diet and the supplements (liquid magnesium, Focus Attention, and GABA Plus). I cleaned it up on Friday and he seemed better on Monday. He had two good weeks after that.

 

This week his tics exploded again....school started and I had added milk and wheat gluten bagels into his diet. I threw the bagels out yesterday, and the school week is over. I am hoping to see an improvement tomorrow. Is it school stress or the diet is my big question?

 

I wish I had more info, but I am new to this! So, I guess my response to you is that it took my son 3 days to "clear his system" of the lazy diet I fed him.

 

Good luck...I hope that May passes and the tics are gone for you guys!!!!

 

Tracey

[Tracey111]

I forgot to mention that the week of the bad diet, he started the sniffing tic, and I have not seen it since.

[faith]

Hi calicat,

I think exactly what you are observing re the junk foods are a thing to look at. Just pay close attention now to what you suspect, and once you clean that up, then after about a week or so make a note of how she's doing. I'm surprised they are sharing stuff at school, I know that at ours they are told not to do that because you never know what the other kids are alergic to so its best to just let them eat what parent packs or allows them to buy.

 

The daily food diary is a little too much information for me, for I find that I have to look over it with a fine tooth comb to figure what's going on. So I think that by now, we kind of know what the culprits could be, so make the note of what items you suspect and the symptoms, and don't change anything else except that and see what happens.

 

As far as the tourette thing, I have come to accept that this is just a criteria of symptoms and the word tourette is just a title to give it for diagnostic purposes. If your daughter still has some tics after a period of one year, it doesn't mean she "has something", her symptoms of what you observe are what they are and are not going to be a worse thing just because it is given a name. I figure my son fits the criteria as he does have the vocal, but I just keep that to myself. Over the years, there may be some periods where the tic is more noticeable, but hopefully most will be only to you and possibly the teacher if it ever comes up. My point is try not to worry so much about what they call it, for everyones symptoms are unique. You are already doing a great job of knowing how to manage them and I feel that is the most important thing. Let's face it, once we are aware of the tics, we will always be looking over our shoulder to make sure they don't resurface or get worse.

 

The sniffing will probably not last too long as its probably a reaction to something you mentioned.

 

Faith

 

P.s. I hope I am not sounding too anything, I don't mean to, I think I'm just trying to show that we are so many here and dealing with different issues, tics being probably the commonality, and I'm just starting to feel like its more common than we all think, we just don't notice it in others. I am remembering the mom who recently said they were so focused on their child at a basketall game that once she looked around, she noticed another boy blinking hard. This has happened to me also. I think I'm just trying to point out to all of us (and myself) that its not so frightening and abnormal as we think. I am trying hard not to focus on that word, its just a word.

 

Anybody with me?

[kallik]

I'm with you Faith. I've noticed the same thing with other kids stretching their mouths in funny ways, blinking a lot, etc. A lot of kids do this. Our son has had tics for a year also, and up to that year milestone I had to quit agonizing over that there was three months left, and one month left, and get busy trying to minimize the tics with diet, etc. I won't even say tourettes, I'll just say he has some tics right now. I have a nephew who had vocal and motor tics and as an adult all he does now is occasionally squint his eyes shut tight occasionally. It's difficult, but we have to take this one day at a time, to enjoy our lives and help our kids get a good emotional foundation.

[Caryn]

I agree completely, Faith!

I think you really said it well.

As mothers (and fathers!) we want to keep our kids safe, happy, and healthy. I think that the initial onset of serious symptoms is the darkest time for all of us, but as you mentioned Faith, eventually we learn what the triggers are for our child. (And for each of us they are different). For many there are commonalities-- allergies to the top 4 (wheat, milk, eggs, corn) seem to be talked about a lot. Others have heavy metal issues, still others chemical/environmental sensitivities. Candida pops up a lot too. What causes the tics and what alleviates them is a mystery that we each have to work hard to solve using the tools we have available and guidance from others. Over time I think we do come to a better understanding of what works for our own kids, and that brings peace of mind-- the idea that it can be managed-- that there isn't some elephant in the closet lurking and ready to pounce at the most inopportune time.

Yes, Faith--

I see tics all the time now, in kids, adults, etc... Just last week I saw a family with a very spirited 3 yr. old at the grocery store. He was very irritable, distracted, wanting to constantly get out of the cart. He ran off on his mother, and when he ran over to me and looked up I saw him wiggle his tongue. I knew that move. I had seen it before in my Tigger. It is the kind of wiggle that you can't consciously reproduce. I thought, oh my gosh, that's a tic! I bet his mother didn't know, nor did his babysitter, grandparents, etc....

I think we 'know' because we have dealt with the worst of it and we are on 'high alert' now-- always on guard against the beast that lurks in the shadows. Was his tic a problem? Most certainly not, I'm sure. As a matter of fact, to the average person, he did not look in anyway out of the ordinary. He may never, for that matter, either.

We just have to all take it one day at a time, and pray, for those of us that believe in prayer-- for guidance, wisdom, and faith!

Caryn

[Chemar]

I personally think the biggest problem is that many doctors are too quick to give a TS diagnosis for every tic disorder. It's my opinion that TS is an inherited disorder and that other tic issues that occur without a family history of TS shouldnt be dx TS. I know that isnt what mainstream medical diagnostic protocol says, but it wouldnt be the first time I have disagreed with what conventional medicine says .

 

Where I sure agree that in many cases, tics are a result of specific triggers, where everything from allergies through GIT problems, infections, parasites, heavy metals and a host of other issues may be the underlying cause........nevertheless, as the mother and wife of two people who DO have genetic Tourette Syndrome, I feel I can honestly say that it IS a very real and accurate diagnosis for both my husband and my son. There are certain characteristic tics that set TS apart from other tic disorders, and I think the "one year" criterion is a very false and misleading dx .....other tic disorders can and do continue for more than a year if the triggers (eg gluten for Caryn's child or strep for those with PANDAS)

But when you have lived with family members who have Tourette Syndrome, you know what it is! Period.

and yes, where we know there are also triggers that can influence the waxing of TS tics, yet I honestly do feel it is a very different category from other tic disorders, and I sure dont object to "the label" one bit....if anything it brought MUCH clarity for my husband about himself and his dad when our son was dx. because it finally explained what they had been dealing with all their lives too. Having the TS "label" was also very beneficial to my son at school because it gave a clear explanation of his tics and allowed the accomodations for them that he needed

 

I can fully understand why many dont want the TS label, but I dont think that should invalidate the very real diagnosis that those with genetically inherited TS have

 

 

ps Calicat...yes, i do think the dietary stuff has likely played a major role in the tic waxing you have seen

[bmom]

Chemar, My question is you say that there are things that set Tourettes apart from other tic disorders, could you tell me what those are? The reason I am asking is my husband has mild tics, and in Feb. my son -8 yrs at time had a major breakout of tics. Due to the fact that my husband had tics, I felt an overwhelming doom as I was sure we were destined for Tourettes- Im sorry, I was dreading the diagnosis. At the time, I ruled out PANDAS because of my husbands tics and not quite understanding it. Anyway, long story short, tics disappeared after 2 months and beginning Kids Calm. 2 small other episodes over the year-it will be a year ago in Feb. One was a quick week tic of eyes which stopped when I realized it could be the Benedryl I stopped it. other coincided with stomach flu. Initial symptoms began 10 days after what I now believe was probably strep throat untreated- 2 days of fever and sore throat. My point is, I now am considering PANDAS again as it would seem that it somehow fits it more. So I have been thinking could my husbands began as PANDAS or could children inherit the triggers of their parents the just as the other children have triggers? What is inherited Tourettes and how is it different than everyone else? I am now believing that the diagnosis is just a name- a name that they had to come up with to fit some type of behavior. I asked Dr. Murphy's assistant if my husband could have had PANDAS she said maybe it could have been related. My son had strep many times when he was 3 then not again until last year- intial onset and 2 months after he had confirmed strep. He began with frequent urination and sore throat. He was put on antibiotics on day 2 and no tics arose and frequent urination stopped. I guess I am trying to figure out his puzzle. Thanks for any info.

[Chemar]

hi bmom

 

as a classic example I would cite coprolalia, also known as "the cursing tic" as being uniquely a TS tic, along with the other -lalias (echolalia, palilaia etc) where others and one's own words are repeated along with some of the uniquely characteristic COMPLEX motor tics like walking and then stopping to spin or perform other motions almost ritualistically. yes, kids with transient tic disorders may vocalize, but again it takes observing echolalia, palilaia and coprolalia to understand that that is a whole different kind of vocal tic!

 

I am not suggesting that people with other issues eg PANDAS do not have TS as it is believed that strep or heavy metals or whatever may TRIGGER the onset of TS, but I also think it is wrong for all kids with these tic disorders to be given the TS label after a year

 

what I am saying is that when you have a family history of Tourette Syndrome, not just tics, it becomes very clear how the "label fits"...we have 3 generations to observe

 

it should also be remembered that Tourette Disorder (its correct medical name) is a SYNDROME

 

Tourettes has been recognised as a unique disorder for a long time now, but I do think that many kids today are suffering tics for OTHER reasons (vaccinations that mess up their immune systems and fill them with mercury, aluminum and other adjuvents from when they are born, food that is chemically contaminated with all the garbage that is called "additives", overuse of antibiotics in young kids that lead to candida overgrowth, plus the "superbugs" that have developed as a result, and that could well explain the rise in PANDAS. PITANDS etc, foods that have been so altered that more people are becoming allergic to them etc etc etc)

 

again I am not saying that kids who have these other issues dont have TS, just that I personally believe they are often incorrectly dx with TS . Also, just because there are is a family history of tics, doesnt necessarily mean it is a TS history.

 

I guess I become somewhat defensive when I hear it referred to in such fearful ways, as if having the dx means some awful life sentence, and waiting for the monster to spring out .

I am not afraid of Tourette Syndrome.

My son has it and has likely had it all his life, even tho we only got the clear dx when he was 10. He inherited it from his dad who in turn inherited it from his dad. We have accepted it and are just thankful to have found ways to keep it under control without those awful meds. My son is not ashamed to tell people he has TS and we have not hidden the fact from anyone. He got his drivers licence with no problem and is a brilliant A student with multiple talents and a very high intellect, who really can say "I have Tourette Syndrome but it does not have me!"

 

I get so many PMs from parents of TS kids who are often too embarrassed to post as they feel that somehow their admission will be seen in some way as a failure, indicating that they arent doing the right stuff to "fix" things. I do my very best to encourage them to see that yes, I fully advocate taking additional measures to clean up diet, supplement correctly, eliminate toxins and allergens and get rid of heavy metals and other things that make the condition worse.

BUT

that they shouldnt feel despondent if these measures dont necessarily CURE the tics completely. People with TS tic and sometimes those tics wax EVEN when one is doing everything "right"........*that* in my opinion is one of the characteristics that makes TS so very different from other tic disorders

 

anyway, I do hope that no-one thinks I am trying to negate that the TS label is used far too much by docs ...I agree! I am just pointing out that for some of us, we really dont need to dig all that deep to know that we have genetic TS and that, again in my opinion only, it is *uniquely* different from other tic disorders in that it is a spectrum of conditions that involve a whole lot more than sounds and movements!

 

If we didnt have such a clear family history I most certainly would have questioned the dx and I sure did have a barrage of testing done to eliminate other things.

 

And I would strongly encourage anyone who is given a TS dx to do the same, especially if there is no family history of it

[faith]

edit:

Cheri, I didn't see your above reply til after I composed this post, so sorry if some of the questions were answered, and I see that they have, so thanks, I think you have addressed what I was trying to get at, so its cool if you don't want to repeat your answer for me... I was going to delete my post now, but I think I'll just keep it in.

......................

Hi Chemar,

thanks for your input, but could I ask this--what if your husband did not have symptoms of ts? Then you would not necessarily think it was an inherited thing? My point being, I really am inclined to think it does not matter. Doesn't it have to start somewhere? I just wanted to reply to this as I don't want anyone reading this to misunderstand and think that just because there is a familial link, than they are doomed to the ts diagnosis or label and there is no hope for bringing the tics and comorbid issues under control. I believe that whatever the root issue is, it all falls under the same umbrella. A tic disorder is a tic disorder, I just don't believe there are "different types" of tic disorders. I hope you are not offended by me and some of us who are not quite liking the word tourettes. But as you know, the reason is because of the misunderstanding and the unrealistic and somewhat unkind way it has been depicted in the media in the past, probably out of ignorance, and also of the depiction being of the more "severe" cases.

 

I'm not sure, but do you mean to say that because your son's case seems to be familial, that the variables that seem to contribute to symptoms in our kids do not necessarily apply to him? Perhaps not, but he has obviously responded wonderfully to the supplements and at least some dietary and environmental interventions and precautions? I'm pretty sure my son has inherited this ts trait from me, even though my symptoms are not and have never been obvious, and have never been noticed enough to even be questioned, let alone be diagnosed. ... Oh look, I have proven my own point, I have had symptoms too (and still do) but so what, call it whatever you like, it doesn't change anything, and won't make it any more obvious to anyone.

 

Recently, as you know, we have gone through the steps at school in order to implement the 504 plan for my son, and I have had to go back to the neurologist to "ask" for the diagnosis for my son's file, so as to have the accomodations for him. I am okay with this, for as i stated above, it is what it is, I am trying not to focus on letting that word scare me, for its just a word to use for diagnostic purposes. I still am dedicated to managing and minimizing his symptoms through all I have learned and experimented with. I believe there is SO much more to this disorder than meets the eye.

 

Faith

[Tracey111]

Well said!

 

I feel such frustration over people near me telling me that "it is what it is".....well how do I know what it is if I don't try and eliminate vaccine reactions/food allergies/etc. I am new to this and people around me seem to think that I am crazy for thinking the chicken pox vaccine he got three weeks before the tics could cause this, or vitamin deficiencies, or food allergies that were never an issue before the tics. Before they tell me TS, I will make sure that it is not something else attacking his little brain!!! People around me think that b/c his cousin has a TS dx, that it could be TS....anything else I am looking at seems like "nonsense internet stuff" to them...."don't go overboard with what you hear on there".....UGHHH..

 

My nephew has TS dx plus ADHD. His brother has dislexia and ADHD. My son, WHO WAS VACCINATED at the same Dr. office as his two cousins now has tics/possible ADHD/and learning troubles. My older son had his vaccines in an office on the other coast....but had some shots at the same doctors office as his cousins/brother stuttered for one year after the vaccines from that office. Hmmmm....is there more to it....is there one manufacturer vs. another that may be more harmful to kids??? Sorry, that was really off topic.....but very much on my mind if they ever give me a TS DX

 

Tics/ADHD/and LD are rampant these days...........Drs. just seem to want to give a DX and not find out the why and how of it all. The parents on this website are amazing!!!! Your children are lucky that you care so much to do all of this research!!!

[bmom]

Thanks Chemar, I know the diagnosis is what it is. Believe me, when this all started, the year deadline always loomed in my head. It was just when I read that post that I realized I didn't dwell on that anymore. I have just come to believe that it is all the same to me-tic disorder vs. tourettes. What I have come to think in my head is that some children have a clear reason for their tics-such as Caryn's son where others may be so sensitive to so many things that they can not be completely eliminated, yet reduced greatly, even with such a thorough mother as yourself. Would that make sense? At least that is how I make sense of it. I often think about the children that could be helped with diet or something though that dont even know there is a cause. What if Caryn or someone else never figured out the cause? Where would there children be?

 

I still somewhat have that elephant in the closet as I haven't exactly nailed down my sons issues. I am thinking it is PANDAS as he doesn't seem to have symptoms unless he is ill with a bug or the Benedryl time. Although I did notice a day of a mouth thing-wasn't quite sure. Yet, I was one of those moms that started everything at once and I am reluctant to stop anything so I don't know for sure. I cut out milk except for on cereal, yet he has had ice cream and milk and not reacted. Treated his allergies with NAET and air purifier. Went to allergy free soap and no chemical cleaners. ect, ect, could go on and on-lcd tv. I don't see any reason to go back to all of that stuff.

 

Anyway, back to inherited vs. tic disorder. Yes my husband tics. Doesn't really have a vocal- Have noticed the occasional throat clearing yet we all do that and don't think it really is a tic. What I have come to wonder is could my son have inherited PANDAS or high aluminum or an intolerance to milk that presents itself in tics like my husband? We haven't really done any testing with my husband as he is reluctant and his don't bother him-although we have noticed a big help with chiropractor and he doesn't mind that.

 

I hope I didn't offend anyone with the Tourette's diagnosis fear. I am one of those like Faith said that it is just all the shows that have portrayed it so bad. It does make sense to me more when you talk of the vocals as being more of a clear definition. My husband does not have that and my son did a throat clearing for about a week during his first explosion that I actually attributed to flax oil-it started when I started it and stopped when I stopped it. Yet that is it. I still put it in my head as all somewhat on a tic spectrum with transient on one end and tics with vocals continuous (ok some may call this Tourettets if they like) on the other. And all can be helped with many things implemented.

 

Thank you for listening to my rambling as I am trying to figure it all out myself.

[Chemar]

Faith and Tracey

 

if you go back and read what I said you will see i emphatically said that I would encourage all to question being given a TS dx and to do everything they could to eliminate other possible causes AS WELL AS to implement all the tests and treatments discussed here as relevant to their situation

 

gosh, if I didnt feel the eliminations and additions etc that we have used for my son helped him, why on earth would I be freely volunteering my time here to try to help

 

 

Faith, I honestly think you missed my entire point.....if my husband and his dad didnt clearly have TS then yes, of course I would have questioned my son's dx a lot more and yes, of course I feel the variables discussed here still apply to my son...again, why would I be here sharing the treatments that have helped him and advocating for these tests and treatments if they had not

 

and yes, it does have to start somewhere.......just like familial diabetes and familial breast cancer and all the other genetically inherited diseases do

But we dont tell someone who has diabetis inherited that they should throw out their "label"...........so why is it necessary for those with inherited TS to have to hide their "label"

 

I just frankly find it somewhat insulting to those who DO have genetic TS to have it continuously referred to as this dreadful "lurking" disease and "label" that somehow should not be mentioned, as if their having that "label" is somehow making them "doomed"

 

and so when I see the validity of the dx being negated in that way, yes, it irks me, not just for myself, but also for the many represented here who do have TS, and who PM and email me frequently because they feel they have failed because their children are still ticcing even after they have implemented much of what works for many of us here.

 

The last thing I want to see here is that we become so obsessed with finding a trigger behind every tic and feel we have failed if the tics dont stop totally, especially for those with inherited TS, where try as we may, we sometimes do NOT have control over the waxing cycles

 

I have said it before and will say it again for clarity....my son used to have VERY VERY VERY severe Tourette Syndrome and OCD, to the point where it caused him to suffer serious injuries from his tics, necessitating hospitalization. Implementing the treatments that I have documented here, which were inspired by Bonnie Grimaldi's plan for her child and refined with help from our physicians, helped him get his life back as it dramatically reduced the intensity and frequency of his waxing phases for both the TS and the OCD. But he still has tics and he still gets OCD flares. Sometimes we can clearly define a trigger (eg hidden MSG or other food additive, moon phases, illness etc) but other times we are doing EVERYTHING right and even implementing more to be extra careful, yet the waxing comes, albeit NEVER as badly as it was in those early days before we began the careful diet,supplements and other eliminations and treatments that have helped him

 

*sigh*

I really feel I am not being heard here for what I am saying and that my words are being picked apart out of context so maybe I will just excuse myself for a while so as not to have to mention the dreaded Tourette Syndrome label that seems to have some so upset

[CSP]

I don't know if anyone else feels this way, but I have caught myself feeling I hate the word Tourettes. Not because I don't like the label (though that very much could have been a pride issue with me in the beginning) just a little confession there.

 

But more of I can't get used to how much it has changed our lives. I just wish my son could go to the movies, or take a trip with school, or church, without all the special needs.

 

Then I get a loving slap from God to wake me up and He shows me just how lucky we are. My child does not have the kind of special needs that some parents will have to deal with for the rest of their lives.

 

 

Faith, my youngest had two friends over yesterday after church, and one of them grunted all the time. I guess I could have asked her mother about it, but I just thought how peaceful the family is, and I would not want to rock their world.

 

C.P.

[CSP]

Chemar,

 

I think we were replying to the post at the same time I didn't see your post until after I sent mine. I hope mine didn't reinforce anything negative about the Tourettes label, I was just thing about how it has changed our life, and how simple I wish this could be.

 

I really love reading your posts because I'm am dealing with the three generations of TS as well, and you always help me to understand why my son and husband do what they do.

 

But most of all it is because I can't wait for the day I can be as understanding a wife and mother as you are.

 

God Bless,

C.P.