Bonnies' Supps and tic severity

[lmcgill]

This is the first minor tic event we have had since putting our son on Bonnies in September 07. He started with a eye squinting (not the usual heavy blinking) and then a slight head nodding. He was excited about his 9th birthday sleepover party as well. He has been doing so good for so long now I thought about lowering his Bonnies to 10 per day from 12.

I know there will be setbacks, I was foolish to think there wouldn't be, but can anyone tell me if there experience with setbacks have been much less or the same once the supplements have kicked in?

In looking at what has been different in diet/lifestyle over the last couple days it has been driving me nuts.

His diet is basically GF now, but he had a lot of gluten Monday as well as some Sour Cream and Onion chips and then the excitement of his party etc. His last real explosion was when he started school and he had the leg jerks, some head movement and a few minor vocals, and that was prior to Bonnies.

Any feedback would be great.

The Neuro did give a diagnosis up here in Canada as "mild TS" but told me that all tics were a form of TS?

[CarolynN]

Imcquill,

 

Will you do me a favor and list the ingredients of the onion chips. I would not be surprised in the least bit if MSG is not hidden in them. As I have posted many times this is my son's BIGGEST tic trigger. I have even found MSG, usually as autolyzed yeast extract, listed in numerous products at "health food type stores". Anything "flavored" like that is almost a slam dunk guarantee it has one form or another of MSG! We have to avoid any and all flavored chip type products.

 

Also does the sour cream have something called sodium cassienate or calcium cassienate. These are another form of MSG found in dairy.

 

When my son has MSG, and he is on Bonnie's vitamins", it takes about a week to calm down from the tics. My thought is it takes his sulfation system a week to process out the "toxins" and excess dopamine that has been created and also to rebuild the sulfate ions back up to do their job again. But I have to say he does not have as big a reaction, then prior to Bonnie Grimaldi's vitamins.

 

I would highly suggest you do some epsom salts baths (2 cups of epsom salts) or make some lotion with epsom salts. Here is the link that I just posted as to how to make them http://www.latitudes.org/forums/index.php?...d&pid=20327 .

 

I really am curious as to those ingredients in the onion chips. Because this very well could be your answer. You will also know, if this is the case, that you son is reacting to MSG products like I suspect many people with tics do.

 

Carolyn N.

[lmcgill]

Imcquill,

 

Will you do me a favor and list the ingredients of the onion chips. I would not be surprised in the least bit if MSG is not hidden in them. As I have posted many times this is my son's BIGGEST tic trigger. I have even found MSG, usually as autolyzed yeast extract, listed in numerous products at "health food type stores". Anything "flavored" like that is almost a slam dunk guarantee it has one form or another of MSG! We have to avoid any and all flavored chip type products.

 

Also does the sour cream have something called sodium cassienate or calcium cassienate. These are another form of MSG found in dairy.

 

When my son has MSG, and he is on Bonnie's vitamins", it takes about a week to calm down from the tics. My thought is it takes his sulfation system a week to process out the "toxins" and excess dopamine that has been created and also to rebuild the sulfate ions back up to do their job again. But I have to say he does not have as big a reaction, then prior to Bonnie Grimaldi's vitamins.

 

I would highly suggest you do some epsom salts baths (2 cups of epsom salts) or make some lotion with epsom salts. Here is the link that I just posted as to how to make them http://www.latitudes.org/forums/index.php?...d&pid=20327 .

 

I really am curious as to those ingredients in the onion chips. Because this very well could be your answer. You will also know, if this is the case, that you son is reacting to MSG products like I suspect many people with tics do.

 

Carolyn N.

Carolyn,

This is once again, strange. I just went out on my lunch and bought some epsom salts. I knew we were out and was also looking for some cream. The pharmicist had not heard of such a thing, but now I can make some myself.

As far as the chips, I looked for the bag but got frustrated due to the fact I couldn't find it in the garbage can.

It just seems that a small bag of chips couldn't have that much in it to affect him. It was just a small grab bag and I don't remember the brand, but now I am tempted to put gloves on and look a little harder!

Thanks for your reply,

Lenny

[CarolynN]

Lenny,

 

My son Daniel, can eat, even a few chips and get a reaction. I remember one time we gave him perhaps 6 "Funions". He started cranning his neck back so hard and started walking into things because he was not able to keep his head straight.

 

What you have to keep in mind is some products will contain higher concentrations of MSG then others. So it could be just a few chips in that particular brand, could be enough to really escalate your sons tics. I can tell you my son one time had four "Tyson Chicken Nuggets from Costco" which has MSG in it set off a weeks worth of high level tics.

 

If it were me, I would look for that bag or when you go to the store next time look for the brand. Quite often you can find the ingredients for various food doing a search on the Internet.. Do you know what brand it is? I think if you can find out the ingredients and if one of them matches up to one of the MSG names you will have a piece of the puzzle for your son figured out. Here is a link I put together with the various names of MSG http://www.latitudes.org/forums/index.php?...aded&start=.

 

Just to give you one more example, the brand "Sun Chips" have MSG in the ingredients of the flavored types. Even something you think is healthy eating has MSG! It is really frustrating.

 

I am guessing, if it is MSG that triggered your son, is those chips had a higher level then his body could tolerate.

 

Carolyn N.

[annag]

Lenny,

I am curious- in regards to "His diet is basically GF now, but he had a lot of gluten Monday", couldn't having Gluten again be a trigger. My 12 yr old daughter has been GF since end of Nov and is doing significantly better now. I am curious and concerned what happens when we reintroduce the gluten, will the tics return in great severity again? How much is ok? Lenny, how long was your son GF and when did you reintroduce it back into his diet?

Thank you so much for your reply and I hope you find your answer.

Anna

[Calicat]

I just wanted to reassure you that, in my case anyway, the little tic episodes that crop up here and there are nowhere near what they were before my daughter went on the supplements. (In our case, it is not Bonnie's supplements, but our own combination.) Each time it happens, by heart just starts flopping around inside my chest... but so far, it never becomes even an tenth of what it was at its worst. Also, it seems to last no more than a week or two at that lower level. Mind you, I don't just wait it out; I try to be proactive, taking out offending foods, reintroducing supplements we had stopped, etc.

 

Hope that makes you feel a little better!

 

But, it does bring up an interesting point.

 

I feel like I notice a subtle reduction in how well some of the supplements may work over time. I am thinking in particular of the magnesium citrate (Kids Calm). I can comment best on this one, because it is one of two supplements that we both take. It still helps tremendously, but after about half a year of taking it, I feel both her and my sleeping is not quite as good as it was when we first started taking it. (The sleep issues are one of the main reasons both of us are on it.)

 

So, why does this happen? How does a supplement become less effective for a person than it was before? Is it possible that the supplement corrects some issue in the body, which then, over time, brings to light a new issue? Does anyone have some insight on this?

 

Calicat

[lmcgill]

Lenny,

I am curious- in regards to "His diet is basically GF now, but he had a lot of gluten Monday", couldn't having Gluten again be a trigger. My 12 yr old daughter has been GF since end of Nov and is doing significantly better now. I am curious and concerned what happens when we reintroduce the gluten, will the tics return in great severity again? How much is ok? Lenny, how long was your son GF and when did you reintroduce it back into his diet?

Thank you so much for your reply and I hope you find your answer.

Anna

 

Well today we saw the Allergy Specialist at BC Childrens Hospital. After waiting for 5 months for an appointment we found out that he is basically allergic to nothing. We did request a blood test for Celiac, so we will see what results come of that. He was great all morning, then after lunch on the way home he started his mild head tic.

We were told again that diet has nothing to do with tics, so we pretty much feel we wasted our countries resources!

I am not giving up, his tics are mild now, if this is a waxing period I can handle it. He was tic free for at least 4 months, one of his longest runs. What triggered this last episode is what I wish I knew. I do believe the stress and excitement over his birthday sleepover and todays hospital visit was not helping him. He was very worried about the blood test.

But to answer your question about GF, he has had very little for about 4 months now. I am going to continue to keep him GF as much as I can, but once the Celiac results come back my wife and I will be more diligent.

After being in Childrens hospital for half a day, you would think I could at least take some satisfaction in knowing that most of the kids I saw today, either with heads shaved or downs or one that seemed extreme Autistic would make me feel better about our situation...but it doesn't. I feel bad for those parents too.

[kim]

Lenny,

 

My oldest son wasn't taking the vitamins, or very infrequently, during his last headshaking bout. Everything prior to that episode had been very minor. There was a time when he was battling staph, that i got a little nervous, as he was having outbreaks of a teeth tongue tic, and a bit of head shaking.

 

My youngest son, who takes them regularly, but not a high enough dosage for his weight, has not had any severe flair's since starting them. Although probiotics and digestive enzymes, raising zinc levels, beyond what's in Bonnie's vits. fish oil, etc., I suspect has played a big part too. He will get little movements like a sniffing tic, or an eye thing, or even an occasional head shake, here or there. Not one episode that has been of any real concern though. He is 11.

 

The Neuro did give a diagnosis up here in Canada as "mild TS" but told me that all tics were a form of TS?

 

I would agree, in that all tics are a form of a movement disorder, which is basically the most notable symptom of TS (in many cases, probably not all) but I think Cheri made an excellent point on another thread. I feel they hand out a diagnosis of TS far too readily once the one year criteria is met. After reading her opinions on it, I think that they have really blurred the lines. I would not have thought that there was any benefit to separating out the "family history," vs none, severity of symptoms, etc. but these diagnosis's are really used to help researchers. It also helped Cheri's son and family.

What is causing tics in later generations with no family history, may not be caused by the same thing as some of the newer tic generation. That could be very important ultimatley. My biggest hope is that reasearch will yeild answers that will help both groups. When something is learned about cancer, in some cases it will help with more than one kind, sometimes not. I guess that's the best analogy I can think of.

[Calicat]

Or, just throwing a brainstorm out here, maybe the two groups are actually much the same, with the same genetic "thingy" going on... but maybe there is just more out there environmentally that can allow that genetic glitch to "show". Nowadays, our bodies have so much more thrown at them--pollution, pesticides, artificial ingredients, genetically modified foods, irradiated foods, cleaning chemicals, flame retardants in our bedding and sleepwear, plastics out the wazoo, and triple the immunizations from 30 years ago.

[lmcgill]

The head nodding tic is still with him, but he only does it slightly and hardly at all in the morning. It seems to me, he was doing his eye blinking more when people were around but when he was by himself he would change to the slight head nodding. I didn't think they could change tics at will? Anyways, as usual my mom and our in laws think I am crazy since they see nothing, or if they do they don't think it is a big deal. Tomorrow it will be week since he started this waxing stage, so this may be just a cycle. His last real tics were in September, so I shouldn't complain.