It's me, Faith....

[faith]

Line up everyone, here are some hockey sticks, grab one...... . L L L L L L L L L L L L L .........NOW BEAT ME WITH THEM!

 

I screwed up again. just for fun, help me figure it out?

 

One would think I should know better, or have some of this figured out by now. but I just keep making one blunder after another. My son's vocal tic is wildly waxing again. I wish it were out of the blue so I could just say, well, that's the way it goes, but no, usually I commit a terrible crime right prior, so I'm pretty sure this is on me. Just to refresh you,... remember my last blunder with the NAC that spiked his vocal pretty good? Well, I had some problems with the head shaking this summer, so I decided to do a clean up of diet and go back to trying real hard to get out the corn and corn syrups. We have also started some chiro work with someone who practices upper cervical. can't attest to anything there yet, but I don't think these treatments are responsible here. When we clean up on the diet, he seems to slow down on the head stuff, but somehow its the vocal that is all of a sudden crazy loud and so frequent its unbelievable. Last week it was kind of going good, but not as bad as right now, so I decided to try a acetyl-l-carnitine again. I had imagined a spike last time I tried that so this required some real bravery on my part. but I counted the capsules in the jar and saw that only two were missing, so it means he only got one or two the last time. I really wanted to give it another try. I gave one 250 mg. (solgar) I think Sunday evening. Interestingly, I felt like the vocal slowed down slightly on Monday, which at the least meant that it definitely did NOT increase. I also gave another one on Monday evening. so far so good. On Tuesday I could still attest to no increase, and I actually enjoyed periods of quiet, where I actually listened by the door of the basement where he was playing to see if he was doing it. he went about 30 to 40 seconds in between (lol, which is good around here) without the grunt. so at least I felt like the carnitine was not increasing anything. I realized it was at a more tolerable level.

 

Now here's the part where you should get your hockey sticks ready. .... I gave his friend some Vienna Finger cookies, and my son of course asks if he could have one. since he was doing not so bad, I had a momentary relapse and said "just one"...(without looking at the label). ....... hit me now if you like...... not twenty minutes later, he was grunting all over the place and continued ever since. hard, frequent, loud. I read the label of the vienna fingers (which I hardly ever buy or have in the house and only did so my husband could have something). to name a few gems: vegetable (soybean, palm and palm kernel oil with TBHQ for freshness), degerminated yellow corn flour, dextrose, high fructose corns syrup and THEN, the less thant 2% part.. cornstarch, baking soda, natural and artificial flavor, soy lecithin.

Geez, I just don't know. could one cookie do this? but those ingredients are a little strong with 4 things I know is not good for him, the hfcs, the TBHQ, (yikes, since I hardly ever see that in stuff, that's a big no-no for Feingold diet), and the soybean. and those are not in the less than 2% category. so perhaps the combo of all the offenders in one little package? .... I am feeling like it isn't the carnitine, because I didn't see this until two days later and almost immediately after ingesting the cookie. but I suppose it could be a delayed reaction because it was just 250 mg.? What say you guys? For those that have seen increase with carnitine, how long after giving the carnitine did you see increase? ... Either way, I should still be beaten....but good. As of right now, its 2 1/2 days since the cookie, and I gave him another carnitine on Wednesday, hoping it might help, so if it is the carnitine, then I may have added some fuel to the fire, so I will have to wait this out. The times I had the increase with the NAC and the tryptophan, both times it took about 7 days before I saw a waning. And waning for us is not "disappeared", just back to baseline. still there, but not this wild, loud and frequent waxing. Once again, I don't see how I can send him to school like this. I am truly at a loss here. The only good thing is that his head shake has lessened, when I see him do it, it is at least softer and less noticeable. no eye twitching right now. If he didn't have this hard vocal, it woud actually be considered good here at this house. my husband is back to zombie ghost mode. he works nights right now so is sleeping during the day, and we have been home so he is hearing this all day long. I have been trying to give lots of water, epsom baths, and more Natural Calm magnesium hoping to detox this faster.

 

Okay, that's my story. start swinging. (but help me first, okay?....he, he... )

 

Faith

[Char]

Faith,

There are going to be slips ups here and there. But I feel the same way when my son has something he is not supposed to have. His tics increase and I feel horrible. I feel like Oh no what have I done. Now I have to wait this out and hope and pray the tics decrease. So I just want to tell you that you are not alone when feeling this way. I find it so hard to keep his diet clean when all his friends and relatives are eating what he can not have. I find it also hard when relatives think I am just nuts for keeping him on the diet. But they do not fully understand things, it frustrates me!!! Anyways, have you tried to give more vitamin b6? Do you give your son Vitamin B6? I can't remember if you do or not. I find that if I give my son 100mg of vitamin B6 for a couple of days it seems to help a bit. Hope your sons tics calm down soon!!! Char..

[ilovedogs]

Well, at least you know there are triggers. I still don't know what they are. I can let him eat all kinds of crud and he won't increase or decrease ticcing!

 

I do not think you need to beaten with a hockey stick. Maybe a feather duster, but not a stick! LOL! Also, the vienna fingers may have vanillin in them and that's a major chemical additive. I used to work for a French pharmaceutical company that produced vanillin and I saw the whole process. I swore off vanillin and that was about 20 years ago!!! Also, my dh has been in the Coca Cola factories b/c he sells products to them, and you really don't want to see how they make Coke.

 

Praying it all slows down for you and that you get a handle on the tics before school starts! I don't have any experience about the carnitine b/c we never ended up using it. When he was ticcing and I thought it was a vocal, he ended up just willingly stopping it b/c my dh asked him to. Go figure! Guess it was more of an OCD type thing than a tic????? Honestly, it was really weird. He just said, "I think I can stop if you guys want me to." And, he did.

 

 

B

[CSP]

WACK!!!!!

 

 

Now I know you just won't feel better until you have had a good beating. I believe Bill Cosby said this.

 

I have seen up to 2 weeks with my son until I saw a slow down. We have da an increase hear too, but like always I believe it is school getting ready to start.

 

I'll PM you later I have to run, first football at the high school tonight.

 

CP

[faith]

wow, only one person wants to wack me? thanks, cp, I do feel better now. ...

 

the vocal is still kind of going, as of today, maybe slightly better, but he's adopted this high pitched "heh" sound that is really driving me crazy, its like he's forcing the sound out. I don't know why, but my feeling is the TBHQ that was listed in the ingredients of these Vienna Finger cookies is the bad boy. only because I'd never seen that listed on a package before and I know it to be a preservative to be avoided on the Feingold Diet. Upon some research I am reading that TBQH has been banned in Europe and some of the reasons behind that would be because they pay for their healthcare and of course this will save them money from people getting sick. Here in the U.S., who cares, right? I'm also seeing that some oils may contain this even tho it doesn't say so on the label (like if it is less than a certain %). ... .... I hate my life....

 

p.s. can anyone here attest to mcd chicken nuggets being a big problem for thier kids? or maybe now that you think of it, some behavioral problems arise after a mcnugget meal? I know one would think its robably the msg, but it may be the TBHQ........I found this somewhere:

 

"But perhaps the most alarming ingredient in a Chicken McNugget is tertiary butylhydroquinone, or TBHQ, an antioxidant derived from petroleum that is either sprayed directly on the nugget or the inside of the box it comes in to "help preserve freshness." According to A Consumer's Dictionary of Food Additives, TBHQ is a form of butane (i.e. lighter fluid) the FDA allows processors to use sparingly in our food: It can comprise no more than 0.02 percent of the oil in a nugget. Which is probably just as well, considering that ingesting a single gram of TBHQ can cause "nausea, vomiting, ringing in the ears, delirium, a sense of suffocation, and collapse." Ingesting five grams of TBHQ can kill."

 

Faith

[ilovedogs]

OK, those stats on TBHQ are ridiculous. I am still amazed at what is allowed in/on our food! I know that Carolyn's son has issues with chicken nuggets from KFC and she was thinking it was the MSG but maybe it's both additives?

Again, I've allowed Grif to have chicken strips just to see if it would trigger anything and I got nothing! Have you been keeping his diet clean now, after these slip ups? What about giving B6 and magnesium just to see if they help level him off a bit. Carolyn and I swear that glycine helps to calm the neurotransmitters and I buy the Carlson powdered and mix it into lemonade. Neither one of us has seen any adverse effects from it.

 

And, if you really want me to whack you, I will! Do we have a smilie for that????

 

B

[faith]

Bonnie,

Yes, I always give the magnesium and I have added some liquid B6 that I have on hand. I can't say I'm seeing any help yet. After my luck with aminos so far (translation = ZERO) , I wish I could try the glycine (I even have it on hand) but too scared. I think Carolyn says she uses like 10,000 mg., is that correct? I think I just have to wait it out. I was thinking of going to the NAET practitioner today to see if treating for the l-carnitine or the TBHQ would have any effect (it seemed to help when with the NAC blunder), but I didn't have an appt. and we slept too late this morning, I'll have to wait till Tuesday when she is next in. We were taking a break from the NAET after looking into Dr. Sims and now doing some chiro work.

 

Faith

 

p.s. you can wack if you want, but try to look mean when you do it, lol.

[ilovedogs]

Bonnie,

Yes, I always give the magnesium and I have added some liquid B6 that I have on hand. I can't say I'm seeing any help yet. After my luck with aminos so far (translation = ZERO) , I wish I could try the glycine (I even have it on hand) but too scared. I think Carolyn says she uses like 10,000 mg., is that correct? I think I just have to wait it out. I was thinking of going to the NAET practitioner today to see if treating for the l-carnitine or the TBHQ would have any effect (it seemed to help when with the NAC blunder), but I didn't have an appt. and we slept too late this morning, I'll have to wait till Tuesday when she is next in. We were taking a break from the NAET after looking into Dr. Sims and now doing some chiro work.

 

Faith

 

p.s. you can wack if you want, but try to look mean when you do it, lol.

Actually, on the glycine Carolyn only gives that amount as a temporary increase to calm his system. On a daily basis I give 2 mini scoops that come in the jar and it's about 4600 mg. Some days I only do 1/2 that amount. We've actually been taking a break from the supplements on a daily basis around here so he's getting them on an every other day basis and I'm going to see how his system reacts. Gosh, I hate treating my kid like he's a guinea pig!

 

B

[Chemar]

((((((Faith))))))))

ya need hugs not whacks

 

I think if we are all honest these are mess ups we have all made at one time or another....I have sometimes done a "whaaaaaa!" when bringing something in, only for my son to find I missed something on the label and it is a no no....how embarrassing is that!!

 

that TBHQ is nasty stuff so it wouldnt surprise me if it were a culprit

 

also remember that with our kids being on such pure diets, even a tiny bit of an offender can cause a dramatic result

 

re the carnitine...just thought I would mention that when my son was able to tolerate it, he did better on l-carnitine rather than the acetyl. as mentioned before, he reacted badly even to that when we last tried it for a vocal, even tho it had worked wonders a few years bf on a screaming tic.

 

also to add that he seems to do much better on P-5-P than just B6

 

Hope things stabilize soon

 

gonna whack ya with another ((((hug))))

[CarolynN]

Hi Faith!

 

Faith first know ALL of us make the mistake of giving our children something we should not. I know the routine. Things are going pretty good so you feel like you want to give them a bit of a break from the restrictions so you give in a little. Then the cycle starts all over again. I have lived this cycle for 4 years now.

 

Bonnie is right. I only give Daniel the 10,000 mg's of the glycine when the tics are really going. The naturopathic doctor said to do it for 8 days along with 150 mg's of B6 for 3 to 4 days (I usually only need to do 100 mg's). I break the doses up during the day usually taking them at 3 different points of the day. I can only tell you it has worked wonders for Daniel. I do know if you are dealing kidney or liver problems you need to be careful with the glycine. You should certainly do some reading up on glycine and run it by a doctor if there is concern. I don't know perhaps there are other people who need to be careful with it too. Daniel is in real good health so it was not a concern to my doctor.

 

So after the tics come down/usually anxiety as well, we go back to the standard 4,600 mg's of glycine a day (now he is getting half of that he is doing so well) and then back to the 50 mg's of B6 in the TS-Plus (Bonnie Grimaldi's vitamins). Faith have you thought about putting your son on Bonnie's vitamins? I can only tell you I really, really believe they have been key to Daniel doing so well. It has taken a long time for them to completely be helping Daniel's body. I say this because I believe his body was so depleted it took a long time for the supplements to build up in his body so now he is in the right balance. Daniel is doing so well now, he just turned 9, and I am realizing I am not have to give him the high amounts of glycine or B6 often at all. His body is able to tolerate things he could never have done two years back. I guess my point is it may take 6 months to a year to see the effects, because the body is healing, but that time will pass anyhow. With all that said we very rarely use the NAC anymore or even the need of additional magnesium (on top of what is in Bonnie's vitamins) because he just does not need it anymore. I also am not needing to do the digestive enzymes anymore.

 

The down sides to Bonnie's vitamins are the expensive and the quanity they have to take in a day. Daniel takes 6 in the morning and 6 at night. But he does not even think twice about it now. He actually asks me to give them to him if I have forgotten. He also knows how to swallow pills so that makes it MUCH easier! I have gotten in the habit of getting those little dixie cups, the kind you would use in the bathroom, and I divide all of his vitamins up accordingly for several days worth. This way I am not continually getting vitamins in and out of the cupboard. It just makes it very, very easy. I buy my dixie cups in bulk at Costco for expensive reasons.

 

Faith, why are you so afraid of the glycine? How about starting out with 1/2 a dose? The naturopathic doctor explained to me what the glycine does is helps the neurotransmitters sort themselves back out by helping them run more smooth. How that works I do not know other then I know I have seen the results. The B6 helps the liver process out the toxins form the foods in the body and the extra buildup of the neurotransmitters that are throwing things off. I am sure it is doing much more then this but this is how I believe it is helping Daniel.

 

Thoughts????

 

Carolyn

[faith]

Carolyn,

I am afraid to try the glycine because it seems every time I try something (especially aminos, don't know if that is considered one), we deal with an increase, real or imagined. but this one now is unreal. it is either pure coincidence, or was from the cookies with the tbhq in it, or the acetyl-l-carnitine (but it spiked after two days on it). so I don't know. in the past, it seemed I needed a week to see it go back down.

 

Are you saying that the glycine should help with these neutrotransmitters and then when you give it to your son, the tics that are going seem to calm down? after how long? a few days, a week? no increase when you first started it?

 

I am actually thinking of trying the Bonnie vits, but he doesn't swallow pills, so I've always avoided that because I know it will be a problem. I was also feeling high B's didn't sit right with him longterm, but I am tempted to try. It seems there are no aminos in there right? I did send off an e-mail, but no response. how do you get in touch to order?

 

Just to add, our head shaking seems to have subsided, but what I think has helped that was going back to keeping vigilant about corn and high fructose corn syrups in foods. I also have him off the computer for a few weeks now, so this may have helped too because I did see him turning his head very frequently while he was playing his club penguin (those dang penguins, shoot em all! lol), ... he actually made a deal with us that he would not use the comuter or Wii til end of August (so about three weeks) in order to get some ca he wanted off e-bay. so who knows. but this vocal, oy! he kind of changed it to an "EH" type noise, almost nasally, so it sounds very forced and loud.

 

I don't know, I am going to wait a couple days and I may go to a NAET appt. to see if she can pinpoint one of these things I suspect and then treat. It seemed to help that time when I gave the NAC and he spiked.

 

Oh and I'm off to a block party right now, so JOY! we'll have to beat the temptations off with a stick...

 

Faith

[CarolynN]

Hi Faith,

 

Yes, I see a difference with the combination of the B6/Glycine within a day at two at most. Whatever it does, it does it real well in Daniel. Unfortunately, I understand everyone's body chemistry is slightly different so perhaps it would not work exactly the same but I honestly feel such a sense of relief knowing I have this "remedy" for him. Remember though to break the doses up during the day. You would not want to give it all at one time. Usually with the higher levels of b6/glycine I break it up in 3 doses however when it is his normal amount he gets a dose in the morning and one at night.

 

I have noticed with Daniel that whatever the reaction is within his body, when he is exposed and does not have the right supplements going in him, his tics would come on real quick but would take up to a week to calm back down. It seems whatever happens is like a bomb that goes off in the body but the bomb takes a lot longer to get reabsorbed then it does the quickness of going off. I suppose it is because our children do not have the proper channels for getting rid of the excessive neurotransmitters that are created when the wrong food is taken in. I know for Daniel the 2nd and 3rd day are the worse by far and after that, as long as I would keep a clean diet, it would slowly go away between days 4-7 after coming in contact with the food or beverage. But now I know what to do with the glycine/B6 the process is so much faster.

 

Regarding Bonnie, you may want to re-email her. She is pretty good at getting back to people but I know a few times I had to e-mail her twice. She will send you a form to order either by the e-mail or you can fax her. Unfortunately, she does not have a paypal type system set up yet.

 

Regarding getting you son to swallow pills can I suggest going to the Vitamin Shoppe store and buying a small bottle of B6. The capsules are super small. Empty the capsules out and just have him practice swallowing the empty capsules. It just took my children a few times of swallowing those little capsules to get the confidence to swallow the bigger ones. I am not joking when I say my 3 year old can swallow the small capsules. Then she accidentley got hold of one of Daniel's TS-Plus vitamins and swallowed it with no problem! My 6 year old son can also swallow the TS-Plus capsules. I think it is just a matter of building some confidence. You could even use raisins to practice.

 

Hope you enjoyed the party!

 

Carolyn

[patty]

Don't be so hard on yourself Faith! We have all been there. It is so hard to keep away from everything, esp during summer w/his friends around.

 

I agree, i would treat it w/NAET. It has worked for my son before.

 

Have fun at the party!

 

Pat

[laurena82]

Faith,

 

{{{{{{{{hugs to YOU!}}}}}}}}}}}}}

 

ah, yes...sigh....

 

Geez, I just don't know. could one cookie do this?

 

My son, now in his 20's and doing well (I wrote briefly one other post to lele here) had tics triggered by foods...esp corn/etc.

 

One year, when we were eliminating all and treating only that way (no meds....eventually I relented and used catapres....which worked...because foods were SOOO hard to control in second grader lifestyle...sigh...)

 

anyhow....we went to xmas parade....he got one SMALL candy cane (corn sweetener) from santa....

 

sigh....

 

by the time we got home, ....he was tic-ing and bouncing etc all over the place.....

 

 

 

oh...and, ...memories....the "hey" sound......ah, yes.....BTDT....

 

 

Honestly.....

 

THis was all ? close to 20years ago......

 

FORTUNATELY, he did "outgrow" most of this in teenage years.......!

 

There was no internet then......but there was a newly formed "LATITUDES" newsletter.....and it helped me SOOOOOOOO Much!!!!

 

 

I'm SOOOOO glad to see this still exists in some way.....

 

SOOO wonderful you have this level of support today...

 

 

IT is SOOOOOO difficult and frustrating......

 

and to try to figure out.....

 

......sigh....the "waxing/waning" nature of the tics.....one goes away (you think it's something you did)...but...no, it's just that one waning, and another is now waxing....sigh...)

 

 

 

{{{{MORE HUGS}}}}}}}}}} and best wishes to all you fellow moms!

[faith]

laurena,

thanks so much for writing. we love to hear positive outcomes from parents of children going thru the same thing. I want to say too, that I'm very impressed that you were able to find and follow other ways to manage your son's tics even tho it was so many years ago. we have so much info at our fingertips, and yet, we are still searching. so congratulations on your early work and we really appreciate your kind words. SO glad to hear your son is doing so well as a young man.

 

Faith