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

[Caryn]

Chemar,

I agree wholeheartedly with your sentiment, and I also believe what Faith said is true too. We must remember that TS is a clinical diagnosis and that the symptoms appear on a sliding scale of severity, with variable triggers and variable treatment options. I believe it is all inherited, to some degree, only the specifications of the particular gene or genes is not yet fully known. The severity of symptoms depends on environmental factors and 'luck'--- if you will. Which is why some of us on the low end of the spectrum get 'better' results from treatment than those on the 'high' end of the spectrum. Years ago I used to teach in a junior high special education class and I had a few students who exhibited tics, one with a dx for Tourette Syndrome, so I know the pain that is associated with the dx on a social/emotional level in the school system to some very small extent (as my Tigger is only in preschool now). We all need to be strong for our kids and not focus on the negative impact that this dx could have for our kids. It is just a name. Period. And as far as the school system is concerned, it is necessary to have a label to get valuable services. Especially for those of you who have younger children. You may qualify for an early intervention preschool program in your state. The dx, as 'ugly' as the media may make it sound, is a very powerful tool for support. We may never be able to change the media's perception, but then, look at the media-- what are the top stories in the headlines? Britney Spears shaves her head.... Everybody knows that the media likes to sensationalize.

 

What we can do is affect positive changes within our communities, schools, and within our families. Get involved-- join PTA, become a room mom, encourage sports involvement-- help your child excel at something you know he/she is good at. (Tigger plays the keyboard). It will become an avenue for social acceptance and a place for your child to 'turn to' when things get 'tough' neurologically and they need an outlet. To all of you who are 'new' to this (Tracy)-- keep your chin up. I got a lot of initial resistance when we started on this path a year ago. But you know what? Once they saw the success that some of these treatments brought our son they all jumped on board. This year Tigger's teacher is a dx'd celiac. What a blessing from God. She is so on the ball about what he can and can't have because she 'gets it'. Sadly, most people don't.

 

And Chemar-- (wrap your arms around yourself and squeeze)... that's a long distance hug from me. Without your efforts and guidance I would not be where I am today. My son would definitely be on some medication right now and probably struggling with his behavior in school (like he did last year before this all started). I have you to thank, for your ministry to strangers on a DAILY basis, despite what is going on in your personal life. You are a rock and have done so much for so many people but you do it 'anonymously' through message boards and emails. Thank you from the bottom of my heart!

Caryn

[faith]

Cheri and all,

I absolutely agree with all you are saying, perhaps I am not being clear with MY opinions, and remember they are just "opinions". I think I am trying to express what many of us here have come to realize. That no matter what the diagnostic criteria is and says our kids have, no matter, I (we) still are becoming so much more educated on the possible underlying causes and treatments that can bring this under control.

 

Cheri, I think what you are trying to convey is that sometimes it IS, well, Tourettes Syndrome, and yes, that is EXACTLY what I am saying. I fully realize there is a such thing and many of our kids will fall under that category, but what I am trying to convey IS exactly what you are saying, we should NOT be offended by this word, for it is not always the severe downward spiraling condition as once thought, and as I tried to convey in my first above reply to Calicat, we should try not to be so frightened of what it is CALLED, its just a word, so let's focus on what we can do about it, mainly to "manage" it and keep it under control. And I have come to beleive we absolutely CAN, sometimes more, sometimes less, but we can.

 

We all here categorically know that you believe in all the natural treatments that we discuss here, for this board may not even exist without you, I never doubted that. I just think the more open dialogue and give and take of all our stories (yours included) will ultimately show that Tourettes is NOT this hopeless diagnosis to be dreaded. I LOVE LOVE LOVE what you describe in your son, and I (along with many others here) are slowly beginning to wipe the tears from our eyes and recognizing OUR children for the wonderful and amazing human beings they are and potentially will be too.

 

Sorry if I stirred the pot a little too much, as I stated above, I certainly don't mean to offend anyone so please Cheri, don't go anywhere or I will feel really bad.

 

Now if only the Golden Globes were not cancelled last night........................................

 

Love and blessings to all,

Faith

 

 

edit: another post slipped in ahead of me again!!

[CarolynN]

Chemar,

 

I just want to reiterate how much you have helped my son. Without your post regarding MSG, and how it had such consequences on your son, my son would be in a whole different situation. It truly was the biggest part of the puzzle and an answer to prayer.

 

Thank you for your time and dedication because I can only imagine how much time it takes. I truly hope you realize the amazing work for which God is using you.

 

Carolyn N.

[bmom]

I also want to add that I hope I did not add to the problem. It is true that you have been at this much longer and probably have much more of an acceptance of it all. I pray to God everyday to do all that I can to help my son and accept what I can't. I believe that he has definately accomplished that in your case and I am still on that path. Thank you for all that you have done to help the people on this board.

[airbucket]

i know i am backtracking in this thread here, but Cheri, AMEN! As a parent who is not sure that there are many "triggers" or not, not sure if anything is going ot help or not, and having genetic/organic/whatever you want to call it not just caused by intolerances Tourrettes Disorder, i have often felt isolated and like a fool when i cant come up with every trigger and identify all the externals that could be causing tics. We do need ot be careful here, my child has been "different" since infancy! he definitely has some organic neuro problems i believe TS is one of them, we have both Dr Murphy and our DAN doc confirming this is not just a case of strep etc. So on the one hand i am eager to continue down this path of testing and supplementing and developing a protocol in the vein of identifying triggers and not using meds. I JUST found out that my sons biological father has tics! I never knew this, i can remember when i was with him thinking it awful odd how he did this face grimacing all the time and coulnt stop, now i understand!

 

as you said Cheri, "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" - hallelujah! so far, in this journey i have no idea what his triggers are. I am intent on finding out if there are any and which, but i dont want to feel like i have to run and hide if i dont find any. I have been involved with this world of autism and disabilities for 7 years now and it is unfortunate that at time even this world splits up, we need ot stick together! I do not want to feel doomed or like a failure if these alternative things dont work. We cant isolate each other or whatnot because we may not be dealing with exactly the same thing.

 

Perhaps im not one to talk as we have really just begun this journey and having ADD myslf it is so challenging for me to assimilate info and use it accrodingly, i am easily confused and thrown off. But thanks to this forum i am motivated to keep plugging away. of course if there was someone i could pay to do this for me i might do that! I think we all have something to contribute and share and no one should feel separated! Just 2 cents here, i hope no one feels they have to leave the forum or backk off - we are all imoprtant and we all make a difference in our own ways!

 

thank you!

 

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

[Chemar]

thanks so much for posting that airbucket as it exemplifies the many PMs and emails I get

 

I do want to say sorry for getting miffed earlier.

 

It isnt in my nature to be that reactive, but I have been feeling for some time that sometimes voices of baffled parents are being drowned out by us all talking at the same time, and so a parent asking for basic advice for what they know to be TS waxing will sometimes leave because of the very points posted above, and are also bewildered by the sheer volume of info they are presented withhere

 

I meant it the other day when I said this board has evolved into a knowledge base that is so up to date on so many things that I often dont have a clue about some of what is posted...and that is somthing I highly commend! so please all, understand I would never want to quench that.

 

But in sharing and discussing I would just always urge a sensitivity to others. We share a commonality here of tics, but from that point outward it is a very wide variance of symptoms, root causes, and treatments that prove effective relevant to the *specific* individual.

 

 

anyway, I hope my outburst may have at least shed some light on what many of us here representing TS patients feel about the negative vibe sometimes expressed about the "label"

 

This is a wonderfully supportive board, and is rather unique in having very little to no discord ever. I appreciate the encouraging words to me, and would in turn like to extend them to all of you, especially to any who may have felt singled out by my previous post. My sentiments are honestly as I expressed them, but they were more a generalization of feeling rather than a personal one toward anyone, especially you Faith.

 

Just as has been pointed out in other posts, everyone here has something to contribute, even those who only have questions rather than answers, and it is that which makes this board thrive.

 

with appreciation to all for the understanding shown to my above posts. thanks and again an apology for the reactivity.

 

ps Calicat, hope you have found some answers as this thread has sure rambled

[faith]

 

 

 

Faith

[P_Mom]

Hi Cheri,

Not to add confusion to anything, but, I noticed something in one of your posts that I felt I needed to reply to as to avoid even more confusion. Corpolalia as being specific to TS, well, I am in touch personally with a PANDAS Mom whose son had mainly Corpolalia along with some OCD in his first (and only) PANDAS episode.(I have also read of several other PANDAS cases involving Corpolalia.) His titers were off the charts and he is definite PANDAS. He received IVIG is is symptom free so far for 2 years. There is also a documented case of the girl, Frances, from the NIMH study who displayed complex "spinning like a rope is tied around me and I have to loosen it" tics, and she was confirmed PANDAS. I guess it seems to me there are no specifics, maybe I am wrong. I do have growing suspicions that the inherited TS "gene "(which they STILL have yet to identify) may well not be a gene afterall, could TS be caused by inherited autoantibodies, or an inherited immune system problem? Could it be that affected generations all had this immune problem, presenting in various ways and passing it down? Don't know, just throwing it out there!

Thanks for all that you do.

Kelly

[faith]

Kelly,

YES.YES.YES......That is GREAT way of putting it and a GREAT possibility. I like it........

 

Also, because if what your are proposing has any merit, maybe that would explain why - and I am seeming to note - that the "upper" generations, seem to have it presented in a more lesser way? Perhaps it seems to be presenting in our generation of children moreso due to the insults of today's world as opposed to say 40 or 50 years ago (processed foods, envioronmental insults, vaccination theory, and the whole host of other things that have contributed to the deterioration of the quality of our environment? I mean, PANDAS!?? That's a big clue right there! ..... This really makes sense to me. And remember, that no one out there seems to be doing any real research on this, so who knows?

 

This just boisters the premise of trying to keep as healthy and wholesome as we can in today's world. Not easy, as we can all attest to, but certainly makes sense. Right now my son is studying in science how changes in our environment effect the organisims at large (of course, in third grade fashion!), but what they are learning is that how not only natural changes, but "man made" changes can have a great effect on how the inhabitants of the world can be effected.

 

 

Faith

[Chemar]

Hi Kelly

nope...no confusion bringing up something that important. I had not heard of the PANDAS/coprolalia connection, so really do appreciate you mentioning that. It is so important for us to have as much relevant info as possible.

 

One of the reasons I pointed out the fact that TS is considered a syndrome is because the "nutshell" neurological model of a gene malfunctioning to cause a dopamine reactivity is, I sure dont think, the *only* factor involved in this disorder. Some people manifest TS as tics. period. Others have a whole group of disorders going along with it. My son (and husband, and grandpa) fall into the latter category.

 

so I firmly believe that it isnt *just* the genetic switch on that causes TS to manifest. But I do believe the genetic predisposition *is* a major factor in it. Basically anything we "pass on" boils down to being genetically inherited, or when factors in the womb, and early neonatal period impact us...... that to me is involved primarily in much of this. But the inherited things come down to genetics in some way IMO, whether it be a specific gene or at a far deeper level in the genetic makeup we have since conception.

 

I dont personally think it is just the hormonal and other inherent physiological makeup, that switches the gene on in susceptible individuals, but the additional "trigger" of something or group of things that in turn causes the gene to switch "on" and symptoms to manifest. These could be environmental, microbial/PANDAS/PITANDS/Candida,Mononucleosis(Epstein Barr virus),Mycoplasma pneumoniae(sp?)Lyme etc etc, stress, food and environmental allergy, chemical etc food additive reactivity, pyroluria, photosensitivity and a whole lot more.

 

so back to the PANDAS cases displaying coprolalia and the complex tics more usually associated with TS. I know of many PANDAS cases were the child most certainly also has TS. Once again I would suggest that this is a combination of factors at work. Is it the strep bacterial infection that attacks the neurological and immune system so as to manifest with those symptoms, OR is it the predisposition genetically was in place that "switched on" the TS gene with resultant CO-existent symptoms of autoimmunity from the strep.......one can speculate so much and in all truth they havent even begin to truly scratch the surface in understanding it all the complexity of the many systems, genetic, neurological, sensory, immune, digestive, emotional etc can bring about so many variances in the symptom manifestations and response to treatments that it is way too much for even the "experts" to agree on the pieces of the puzzle......so it sure doesnt surprise me that a group like ours would see things in many different lights

 

 

But, IMHO, the generational thing, the males more than the females and the commonalities found amongst TS individuals....to me that is clear genetics.....and the characteristics I see not only in my family members and those we know with TS, but also say at a TSA meeting etc....

 

I guess I just truly feel in our case, Tourette Syndrome is a clear dx, but i recognise it comeswith highly variable symptom manifestations, and that it is genetically inherited, again with so many variables in just *how it will manifest*

 

....again, with the emphasis on ALL of the above is *just my opinion*

 

I do think this is a valuable discussion to have, and sure is in keeping with some of Calicat's original questions

 

with (((Hugs))) all round. this really is a great group with a phenomenal accumulated knowledge and experience