Supplement Info Needed

[Guest Jean]

Hi the7roses,

Sorry to hear what you and your son have experienced. I’m not very experienced mom, and I’m still learning. I just want to pass some of the info. that I know:

 

1). Regarding Magnesium with Taurate and supplement:

You may want to go to Vitamin Shoppe for Magnesium with Taurate ,etc.

People there are pretty knowledgeable. You can find the store near you

Via the following link:

http://www.vitaminshoppe.com/stores/index....requestid=50035

 

2). Regarding sniffing:

Try to stop taking milk and/or dairy to see if it helps.

 

3). Regarding eye rolling:

Try to avoid TV, e-games and computer at least a week to see if his tics decrease (search for Claire’s posts).

 

It's not a easy road, but please don’t give up, the day will come…

 

My best wishes!

 

Jean

[Heather]

The 7Roses,

 

Yes, the tics DEFINITELY ARE related to food and the environment. The hundreds of posts on here prove it. That is exactly what this forum is all about...finding the triggers and eliminating them and then working on restoring balance to the body so that the food triggers can be one day reintroduced. There are many on here that will help you through it day by day.

 

As Jean mentioned, I also order my magnesium taurate from the Vitamin Shoppe. It is very hard to find anywhere else other than Bonnie's supplements. Also, as you mentioned of one mom's experience there is often a worsening of symptoms before they get better. This is very common and known as the healing crisis. As the bad bacteria (yeast/parasites) are being killed in the body, toxins are released into the bloodstream that may cause symptoms to worsen for a short period. You have to believe in the treatment to continue and things will get better. My son had tics for 3 months last winter every few seconds all his waking hours as you say.

 

Have you tried any antifungal supplements?

 

So as to not be overwhelmed with a grocery list I suggest just trying your best to make everything from scratch and avoid additives and preservatives from packaged foods. Avoid food dyes and corn syrup.

 

As Jean mentioned (and thanks to Claire's experience and research), try to eliminate TV for a week and see what happens.

 

Heather

[The7roses]

Heather,

 

I went to the Vitamin SHoppe online and found the Magnesium Taurate - 125 mg. What dosage would I give him - 1 pill, 2 pills??? What else should I get - Calcium, Zinc, etc.? What dosages? Are they best to give in the morning, the evening or both?

 

Regarding what you said about the tics being related to the food and environment, is it then fair to say our kids have Tourettes when it might be environmental/food allergies? This gets me confused. We have a TS diagnosis but yet, regarding all the folks on this site, the tics are pointing more towards allergies than towards a neurological condition. I am trying to reach my own comfort level and I have so many questions that need answers. I know you all will "bear with me" on this!

 

One of my other questions that seems to keep getting missed is the waxing and waning. If a TS diagnosis is made, then aren't the tics supposed to wax and wane? If a child is not doing this, is it still considered TS? Devyn tics without any relief. He has no periods where there are no tics, except when he sleeps. From reading the posts, it seems that most kids go in periods to ticcing and then slow down or stop for a period. Devyn also doesn't appear to suppress them either. It is a 24/7 bout of tics with the exception of sleep. This is a big question for me.

 

Once I hear from you all, I am going to place an order online at Vitamin Shoppe and see how that goes. It is certainly cheaper than Bonnie's, although I would rather have hers, but finances will not allow that at this time. Please let me know what vitamins/supplements to start off with and at what dosage.

 

If I call and make an appointment at the ENT here in town, do I ask them for the IgG blood test? Devyn was seen there about a year ago and they did minor bloodwork as he has allergy shiners and I wanted to find out what he was allergic to. He came back negative on whatever they did test for (not much) but they said children are frequently allergic to milk even though the test comes back negative so I went ahead and took him off of all dairy as he was having constant stomach troubles and headaches. They seemed to disappear once the dairy was eliminated so I guess what they were saying was true. But I need to be very specific in what I ask them for now, which is where you all need to tell me what to ask for. Also, how do I find out if we might have mold in the house? None is visable, but I've heard houses can be full of it even though you can't see any. What else do I do in the house to help me out? I feel like such an idiot asking all these questions as I am usually the one leading others in their attempts to do something. This has just got me totally overwhlemed to the point where I can't think anymore.

 

I really appreciate your opinions! Thanks!

Marcia

[Chemar]

Hi Marcia

 

although i wholeheartedly agree that diet and environmental triggers play a major role in tics, yet it is very important to differentiate between undefined tic disorders and GENETICALLY INHERITED TOURETTE SYNDROME

 

if it is genetic TS, there is an underlying mechanism at work that isnt quite the same as the transient and other tic issues, and it is just not accurate to suggest that genetic TS can necessarily be "cured" in the same way that transient and other tic disorders can.

helped tremendously.......most definitely YES as our experience with my son going from very very severe TS to now extrememly mild.

 

as to the waxing and waning

 

this does not refer to all tics coming and then going ...ie tic free times.

It refers to SPECIFIC tics waxing and waning. But the fact that tics are always present is very common in true TS, and that they only cease when asleep.

 

My son has always ticced daily.

when it was severe, he had several tics running at the same time, motor and vocal, waxing and waning.

now that things are so much better, he seems to have fewer overall tics, their manifestation is less intense and noticeable, and they seem to also wane faster and he does have long periods thruout the day where no tics are noticeable

 

but, he still tics every day while awake, just to a MUCH lesser degree....an occasional little sound, or facial tic or movement.

 

I cant remember if you have any history of TS in your family? Truly, to me that is the primary indicator of genetic TS tho I know that many experts disagree.

I do feel that many kids are diagnosed with TS who do in fact not have it but instead are dealing with a tic disorder brought about by some other trigger.

But the flipside is that some do in fact have true TS and one has to approach their treatment with a more flexible attitude...not being disillusioned when the tics dont stop completely nomatter all the right stuff they are being treated with.

 

If your child does have TS, you really need to adopt the most valuable piece of advice that another caring mom once gave me "It's OK to Tic"

 

bleesings to you Marcia......it is good that you are embarking on a supplement plan as it can ONLY be beneficial.

[The7roses]

Oh Chemar....BLESSINGS to YOU!!

 

There is no known TS on either side of the family. The Neurologist said it was most likely a GENE MUTATION and said there IS cases of TS without a family history. Of course, that is not what I wanted to hear. I am determined to prove her wrong!

 

As mentioned before, Devyn also has Selective Mutism and does not speak in school. Towards the end of the year, after he has reached his comfort level, he usually will say a couple of words to his teacher. So, for him to be in school ticcing, he is verbally not able to defend himself as to why his face is doing what it is doing. This is the double whammy for him, which is why I have thought about homeschooling him when he starts middle school. If there was teasing, he would regress in school, which we don't want because he is a WIZ in school right now. He has no learning problems, has beautiful penmenship, draws very beautiful and detailed art and is extremely smart, which seems to SOMETIMES be what TS isn't. From alot of what I have read, TS brings on learning problems, sloppy writing, etc.

 

I just have the gut instinct that this is not true TS, although he fits so much of the criteria for having it. I feel I have taken on a true challenge as he is dealing with anxiety, dairy allergy, high cholesteral and now tics. He has so much to deal with....

 

So, the Mag/Taurate from The Vitamin Shoppe is 125 mg. How many would he take a day and at what times? Do I also need Zinc, Calcium and B-Complex? If so, how much do you think and at what dosage. You don't think this is too much to throw in a body all at once, do you? Also, is it possible that the Prozac he was on (for about a month) brought on the eye rolling and the pidgeon=toed walking? As soon as she bumped him up to 20mg., both of these started. He has been off of the Prozac for about 3 weeks and he is still dealing with the eye rolling and the pidgeon toes.

 

I hate to keep asking the same questions over and over, but it seems we all get on the subject of some of them and get caught up in those answers and forget about the rest of them. I am trying to get all my questions answered so I can better deal with this. Forgive my repetitive asking!

 

Also, I had him spit in a glass the other morning and nothing happened. It just sat there. So, I guess he does not have a yeast problem? Also, what is the Treelac (sp?) you all are talking about?

 

Bless you all for helping me out.......

 

Marcia

[Chemar]

yes, marcia, you are sure dealing with a whole different scenario re school and the selective mutism issue.

you are right to follow your instinct on that one.

 

Not all kids with TS have learning disabilities, and most are actually very bright and talented, although yes, ADD is often comorbid and yes, handwriting, especially in boys, seems to be a struggle

 

I am always so hesitant to recommend doses as it is very dependent on a number of individual variables.

However, magnesium really does need to be balance with double the amount of calcium and so you could maybe start with 500cal:250mag and see how that goes.

I have always been told that zinc is a valuable addition and so with that level of cal and mag, around 15-25mg zinc, but again it depends on the individual.

 

my son didnt react well to a B complex and so we had the individual Bs topped up. he tolerated the combo ones in his multi just fine. I feel that vit B6 is important with all neurological issues, but again this is determined by the individual metabolism and underlying things in their system.

 

I would personally suggest that you get a good pure multivitamin/multivitamin complex with no copper and low iron, and add to that the calcium and magnesium( remember to check how much of these is already in the multi, as well as how much zinc)

then add to that a good essential fatty acid complex...if your child handles fishoil, preferably one that combines fish, flaxseed, borage and evening primrose oils

Natrol makes a good combo

 

start on that, and then see how things are for a couple of weeks and then reevaluate what else may be needed.

 

and dont forget, by far one of the major tic triggers is the artificial stuff in food!

avoiding junk food is really important.

 

hope that helps to get you on the supplement road

 

 

as to the prozac......well, any doctor who still gives prozac to a child is really in need of some updated education on the dangers all round of SSRIs , and especially in young people.

and yes, i have heard numerous reports of SSRIs triggering tics.

 

thankfully, it is out of your child's life and will hopefully be out of his system soon too.

 

many people use acetyl-L-carnitine for the eye tics. it is an amino acid, and my son had benefit from it initially for eye rolling/blinking, but then seemed to get a bit edgy from it so we stopped it.

 

I also want to recommend Royal Jelly as an all purpose supplement, which is especially rich in the B vitamins. As long as your child isnt sensitive to bee products, it is a great nutrient!

 

bye now

[Heather]

The7roses,

 

Chemar has answered most of the supplement questions so I just wanted to add a couple of other comments.

 

First of all, I wouldn't rule out yeast even thought the spit test didn't show sinkers. I believe that most people are dealing with yeast issues.

 

Also, my son's tics did not wax and wane either and were continuous and constant unless sleeping. This happened for a few months until we treated the yeast issues.

 

I also believe that once you do the treatment for awhile and his immune system is boosted, you will also see a change in the selective mutism. When the immune system is compromised there are all kinds of wacky nervous systems disorders that pop up. I truly believe they are all related to this imbalance.

 

The magnesium is definitely important but as Chemar has pointed out there are other supplements that are probably needed but it is very individual.

 

Good luck and keep us posted.

 

Heather

[Guest jc]

Hi Roses

 

Just another link for you to read for info ..

 

www.prozactruth.com/tics.htm

 

There were feedback from this post that taking lecithin, vit b complex and folic acid may stop muscle twitches.

 

 

Good luck!

jc

[marina]

Dear Chemar

 

Today we have just finished day 5 of the Ultra Muscleze supplement I asked you about.

So far his symptoms have not improved, and actually deteriorated.

Is this a typical healing crisis, and if so how long should I persist, or is it more likely a negative reaction to suspect potassium aspartate ingredient or natural orange flavor?

 

Yesterday morning we went back to the osteopath, and are due back next week. It was the only time that it DID NOT result in a very dramatic improvement in his tics.

This has worried me no end, as it has previously consistenly given him an almost total respite for 7 to 10 days.

 

During our visit I showed the osteopath the formula.

Although he basically thought it was a good formula, he wanted me to reduce the total dosage of magnesium to 300mg, as he believed too much can have the opposite effect. How confusing!

 

Mind you a few weeks ago, day 6 of the supplement was when he suddenly had a dramatic improvement.

It was also our 4th day on our beach holiday (Much reduced screens?).

 

As usual, you advice would be much appreciated.

[deagar]

Hi roses

 

I am finding it hard to even write this because for a neuro to prescrible Prozac to a child that youing when there is a serious black label warning on it issued at last by the FDA that it should NOT be used in young people...........!!!!!!

 

sigh

 

As far as the supplements go, they were a life saver for my son, even tho we didnt use Bonnie's supps, we followed her guidelines to develop my son's regimin (Bonnie had not produced her own BonTech range when we started my son on natural therapy 4+ years ago)

 

I have bumped up the thread I wrote on our treatments, because I do strongly feel that it was a combination of things that helped.....not just the supps but the elimination of toxins (yeast, heavy metals, artificial stuff in the diet) plus the rest

 

If you have no family history of TS and more than one of your children is exhibiting tics etc then it is very possible that either something in the home environment (eg mold, lead, mercury, formaldehyde etc etc) or diet allergies, or internal parasite like yeast(Candida) or even strep (PANDAs) could be causing this. Also maybe there is a PYROLURIA issue here.

 

I highly recommend that you try to find an Integrative doctor who has the training in conventional medicine along with the knowledge of alternatives to guide you thru this.

 

I will bump up my thread for you on The Natural treatments that have helped my son

Chemar:

I am looking into supplements for my son and have one concern. I heard that vitamins etc. only have to have 10% of what is listed on the label by law. I have found a company that sells vitamins/suppletments etc. that chose to follow pharmacutical (sp?) guidelines instead so what they have listed on the label is actually what is in their product. My pediatrician is worried about which ones have metals included in their products without us knowing though. Have you ever had that concern or heard of that?

Thanks again - Deanna