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Hi All! I posted here a few months ago as I suspected my son MIGHT have TS. We seen a Pediatric Neurologist in November who diagnosed him with TS, even though there is no known TS on either side of the family. Devyn currently has had eye twitching and nose/mouth stretching for over a year. During this time, he also had a short time of sniffing. I am concerned, though, as he has twitched EVERY DAY, all day long, for over a year. There has been no waxing and/or waning. I figured there might be a period of little to no tics during this time. His Neuro put him on 10 mg of Prozac. The first week was great - his tics had slowed down sooooo much! Then , they cam back, so she bumped him up to 15 mg. No change, so she bumped him up to 20 mg. He started bouncing off the walls and started a very severe eye rolling tic. It is heartbreaking to look at him. He said he doesn't even realize his eyes are rolling! Anyway, I went the medication route because he also was diagnosed years ago with Selective Mutism, a social anxiety disorder. He is non-verbal in school because of this. Since he was being teased about his tics, we thought maybe the Prozac would kill 2 birds with 1 stone - help him with the anxiety disorder AND help diminish the tics. To make a long story short, I have weaned him off of the Prozac. This is day 3 without it and the eye rolling is still pretty intense. I contaced Bonnie about her supplements and, as of right now, am going to order them probably within the next 2 days. Do you all think the vitamins are the price or is there something else that might be just as good? My goal this year is to get my son as "tic free" as possible by doing whatever it takes. He also has a supposed milk allergy and has been off of all dairy since March of 2004, plus he has genetic high cholesterol. Quite a lot on his plate. If I do an elimination diet, what should I eliminate first, second, etc.? There is so much to do...I just don't know what to do first! Also, my 7 year old daughter has just started moving her mouth sideways all the time. Could this just be a transient tic? Fear is keeping me in a constant state of pamic. I trust everyone's judgement on this site and thank God you all are here!

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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

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Hummmm....lots of things to think about!! How do I go about testing for all the various things you suggested could be causing the problem? Also, I have looked into Alternative Medicine doctors, etc. and, since we live in a small town, there is no one around unless we travel into another state and with things the way they are right now, that is next to impossible. We live about an hour from Morgantown, West Virginia but I can't seem to find anyone there either. I would love to have him tested for more allergies (the RAST test) but everyone says insurance doesn't pay for it so we are sunk there. So, I just don't know where to begin. I promised him I would "fix" him and I will, I just need someone to tell me step by step what to do, in what order to do it and just guide me along. You all are like angels who are here to guide us down the right paths for our children. Bless you all.....

Marcia

 

Oh, in response to the Prozac issue, the Neuro ASSURED me that Prozac was the SAFEST drug to give a child because it has been on the market the longest. I am so glad my gut instinct forced me to get him off of it!

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Did you see the 2 names I posted for you from the env. doctor list at the top of this board) on the thread where you asked about doctors? I don't know your state, but with our doctor, who isn't close, we only had to see him the first visit and I do the rest via phone.

 

You generally need a doctor to order many of the tests. However, if you browse through this site, you will find some things including certain tests you can do on your own (without a doctor's signature) while searching for a doctor. You will likely need to pay out of pocket if no doctor. RAST tests are not the right allergy tests (IgE), you need an IgG test. In any case, our insurance covered them at 70% (out of network rate). All of this is on the threads--too much for a post. Check out the thread on tests, and the threads for newcomers, and of course Chemar's thread.

 

 

WEST VIRGINIA AAEM list

Nation: USA

Member: Prudencio C. Corro , M.D.

P.C. Corro M.D., Inc.

251 Stanaford Rd.

 

Beckley, WV 25801

Phone: 3042520775

WebSite:

Membership: Member

Specialties: Allergy, Environmental Medicine, Otolaryngology,

Certifications: Otolaryngology,

 

Member: Albert J. Paine , M.D.

Bluefield Ear Nose and Th

2120 Mountain View Ave.

 

Bluefield, WV 24701

Phone: 3043259577

WebSite:

Membership: Member

Specialties: Otolaryngology,

Certifications:

 

 

Good luck,

Claire

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Thanks, Claire, for the names of the doctors. They are a bit far but I will continue to look for someone.

 

If I decide to forego Bonnie's supplements and just go to GNC, for instance, what do you all suggest that I start Devyn out on as far as what supplements to take and at what dosages? He is 10 years old and weighs 60+ pounds. He is a poor eater, mostly due to the lack of what he is able to eat due to the milk allergy.

 

How long will it take for the Prozac to be completely out of his body? It has been 6 days so far.

 

With kids who are allergic to just about everything (artificial colors, sweeteners, high fructose, etc.), what is there left to feed them???? In dealing with this milk allergy for almost a year now, my poor child is limited in what he can eat already. What is left if he has more food allergies (and I'm positive he does)?? We have no health fod stores around and even if we did, who can afford to pay their prices? We are working on a very limited budget right now and just buying "special" items for him to have to replace dairy us quite expensive. We can't afford any more unless the rest of us stop eating!

 

Ugh...........so much to worry about................

 

Marcia :wacko:

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Re diet, we just buy everything at Whole Foods, as I don't have to worry about artificial anything that way.

 

www.feingold.org has lists, or you can just read labels carefully.

 

The real answer is cooking more at home vs prepared foods.

 

We have a wheat restriction, so I make my own gluten/wheat free flour and just cook normally with it. I use goatein (goat milk powder) and water in recipes needing dairy. (We don't like the goat or rice milks).

 

I got a crock pot and things are easier this way--great soups and stews that I throw together in the morning (turkey/rice soup). Plus hot dogs, hamburgers, baked potatoes, 'breaded' chicken/fish, fast fried rice, artichokes, fresh veggie juices (my son hates most vegies, this is easier), grapefruit/pears/banana/apple here or there. Coconut milk for a cream soup.

 

Milk just rules out mac and cheese, pizza and cereal. You can still do muffins, toast, Pancakes, eggs. I don't try to replace the milk with fake milks, just the goatein powder for cooking, and I think it nets out cheaper than milk.

 

I had to learn to cook. But you save on eliminating prepared foods. You just need to find 'comfort' foods, in my opinion.

 

Wheat is much harder to accommodate to me than milk or no artificial ingredients. For a while we did no: wheat/milk/peanuts/corn/eggs/almonds/sesame/bananas/almonds/artificial anything/corn syrup.... Now it is just no wheat/milk/peanuts//artificial anything/corn syrup--I consider it 'easy' by comparison.

 

For snacks, I glaze pecans in a pan with xylitol/butter/vanilla/cinnamon. He loves it. Xylitol and stevia are the only non-sugar sweeteners I use. Or just sunflower seeds.

 

We have some threads on recipes, there is no cheese substitute, so I do occasionally give my son cheese, but with a Houston Nutriceutical's enzyme for casein/gluten. This makes it livable. For him I notice no reaction this way. There is a thread on this also.

 

Claire

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Marcia

 

best you can do for now is get a good pure multivitamin/mineral (no colour added) and also an essential fatty acid complex (if you child is ok with fish oil, try to get the blend that has fish, flax, borage and evening primrose)

 

that at least will be a good nutritional start, and you can then begin to add other supplements gradually

 

Bonnie's research shows that most needed in TS is magnesium, and she recommends the magnesium taurate form, which is hard to come by ...I dont think GNC stocks it but the Vitamin Shoppe does. It is generally recommended that one should take magnesium with calcium and zinc, with the magnesium at half the dose of the calcium. i am really hesitant to suggest doses for your child because he weighs so much less then my son did......I am thinking probably 400cal:200mag:25zinc but I honestly dont know for sure. maybe someone with a child around your son's weight can have better input.

 

hope this at least gives you a starting point.

:)

 

ps have you heard the latest news about the hidden memos on prozac showing that the manufacturer knew back in 1988 that it caused suicidal tendencies and psychotic behaviour!! :wacko:

i am sooooooo glad you got your son off it!

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Marcia,

 

My son is about your son's weight. I give him about 800 mg calcium and about 400 mg. magnesium. I also give B6 in it's active form (P5P- 50 mg) and zinc (25 mg.) Some give much more B6 but it is good to use a multi B vitamin so as not to deplete the body of other B vitamins. I just find that my son doesn't need that much B6 to keep the tics at bay. It is very individual. As Chemar said above I believe the magnesium is what is doing it for us and we are using magnesium taurate from Cardiovascular Research. It is relatively inexpensive...I think it was about $10 for a bottle of 60 caps. We ordered it from the Vitamin Shoppe online. While doing the multivitamins it would good to use an antifungal as well as a probiotic to clear the bad yeast. I know some may disagree with me but I believe yeast is a problem in most cases even if testing may not always show it.

 

Heather

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Happy New Year to all

I would like to start Matt on vitamins but am a little confused re amounts.

I have a mag/ calcium supplement listing 250 mg magnesium amino acid chelate, equivalent to 50mg elemental magnesium and 500mg calcium amino acid chelate equivalent to 100mg elemental calcium.

Is this OK or are there different types of magnesium etc.

Do I consider the chelate amount or elemental amount .

In Australia, I havent found magnesium taurate. How essential is the taurate? Can it be given seperately and is it an amino acid?

 

Also I have a multi vitamin which contains the full range of B's plus zinc and additional magnesium. Maybe I should use a seperate B & zinc so as not to give too much magnesium & calcium.

Sorry for all the questions but I hate the idea of giving too much or wrong type.

 

Matt is having minor neck tics since his last osteopath visit. Am hoping to now clean up his diet after all the festivities and start supplements to see if they will go without further visits to the osteopath.

It appears the the osteopath treatment keeps him free of tics for about 7 to 10 days before they start to come back.

 

Heather, I'm interested to know how you went with the chiropractor

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Whew-Hew!!! I have no scrap paper left! My desk has notes EVERYWHERE!!! Thanks for all the input. I am pretty overwhelmed, though.

 

Okay....I hopped onto VitaminShoppe.com and seen a Mag/Taurare by Cardiovascular Research and it had SHPIKES on the front of it. Is this the one you are speaking of, Heather? I then looked at the Calcium 800mg and there are pages and pages of them! Which one do I choose? Does anyone who uses Vitamin Shoppe have the exact names of the ones you use? Also, the 800 mg. of Calcium, 400 mg. of Mag/Taurate, 25 mg. of Zinc and 50 mg. of B6 seem like this is okay to start out with. I actually think Devyn is closer to 70 pounds than 60. The prices on the website are certainly cheaper than Bonnie's although I know Bonnie knows what she is talking about. Oh....so many decisions!

 

As far as diet eliminations, what sequence should I start off with as far as which one to "check" first. How long do I eliminate the items for - 1 week or 2? If the tics decrease, how do I know if it is due to the vitamins or to the food elimination?

 

Geez...I am so glad I got him off the the Prozac!!! She wants to put him on Clonodine next! WHOA to her!! The Prozac has made him so wild.....not in a bad way....he just can't seem to sit still. Plus, I previously said about the severe eye rolling, he also is walking with his toes pointed inward! Do you think this would be from the Prozac, too? He has never done this before. It has been a week since I "pulled the plug" on the Prozac. Do you think it is completely out of his system by now? She seems to be very educated on Tourettes as she has quite a large amount of kids with TS that she works with. It nakes a person wonder who is valid in today's society?!?!?!?

 

Are you all saying that tics could NOT be Tourettes but could be just food allergies/yeast/etc.???? Even though he has DAILY tics with no waxing or waning and had a minor bout of sniffing for a few weeks and no KNOWN TS in either family, might he not have TS??? I also wonder about the 24/7 tics with no slowing down or letting up. Is this "normal" in TS?? Devyn is a WHIZ in school and has beautiful penmenship, which seems to be 2 traits that he should NOT have if he has TS. He did have a "tic" where he would pull the skin down below his nose, as if stretching it with his mouth, for about a year. This was a couple of years ago. I thought it was nerves. Oh, gosh....I am so confused and my mind is going in so many directions! I guess I am just hoping that, deep down, he does NOT HAVE TS and some other tic problem.

 

Gosh....I wish you all lived across the street!!!!!

 

Marcia

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7Roses,

 

If there is no family history of TS, your child may not actually have it.

 

There are a range of tic syndromes, and some here would definitely have gotten a TS diagnosis, but when to either no tics or minor motor tics with immune system healing.

 

Even if it is truly TS, like Chemar's son (he had OCD too), such tremendous results can be seen that appear miraculous.

 

But it is more determined in my opinion by the commitment of the parent to find the path to healing for their own child. One formula doesn't exist, just some commonalities.

 

What some of us wonder is whether these measures, e.g. supplements or food restrictions, are lifelong or temporary. Only time will tell.

 

What we do believe is that the drugs don't heal the immune system, best case they minimize symptoms, worse case they have horrible side affects.

 

Claire

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Marcia,

 

Yes, the Magnesium Taurate is from Cardiovascular Research but unsure of what you mean by shpikes in front of it. It comes in 60 capsule bottle and is 125 mg per cap and costs $9.56. The other strengths sound reasonable to start out with to me but I am no expert. Just so you know, some children cannot use B6 in its regular form as they may lack the nutrients to break it down into its active and usable form P5P. Because of this it is sometimes wise to add a small amount of P5P which is ready for the body to use. We were using a NOW brand of P5P only but now I am using a multivitamin from Kirkman Labs that is high in P5P.

 

As far as brands for the calcium and others, I don't have any expert advise other than using a reputable brand with no artificial ingredients. I use Solaray for Calcium and Natural Factors for Zinc. I also have used a SISU brand for Calcium/Magnesium.

 

If the tics decrease there is no way of knowing if it is the diet or the vitamins. That is the downside of all of these supplements. It is so hard to know what is working. It may take some time and observation before you really know.

 

Marina,

 

The trip to the Chiropractor has been good so far. He found several sublaxations as he calls them where there appeared to be blockages in the nerve paths of the spine. He is a very young and up to date chiropractor and for some reason I trust his theory. He showed me on a chart of the spine that the very places where he has found the sublaxations are pathways directly to the intestine. He has done a couple of adjustments so far and he will do several more before we finish. Will's tingling is definitely reduced since Christmas so we shall see what the next few weeks brings. I am also back on the Threelac since I believe the yeast has regrown due to excess sugar intake.

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  • 2 weeks later...
Marcia,

 

My son is about your son's weight. I give him about 800 mg calcium and about 400 mg. magnesium. I also give B6 in it's active form (P5P- 50 mg) and zinc (25 mg.) Some give much more B6 but it is good to use a multi B vitamin so as not to deplete the body of other B vitamins. I just find that my son doesn't need that much B6 to keep the tics at bay. It is very individual. As Chemar said above I believe the magnesium is what is doing it for us and we are using magnesium taurate from Cardiovascular Research. It is relatively inexpensive...I think it was about $10 for a bottle of 60 caps. We ordered it from the Vitamin Shoppe online. While doing the multivitamins it would good to use an antifungal as well as a probiotic to clear the bad yeast. I know some may disagree with me but I believe yeast is a problem in most cases even if testing may not always show it.

 

Heather

you all seem very knowledgeable......who knows better than a mother. sorry marci i am also so new so i cant inform you only support you. you have asked all the questions i was going to . my son is much smaller. only 4 and about 45 lbs so like you i am unsure of dosage. my question to everyone else is are there any side effects from the vitamins. whatso ever big or small. even if its just an occasional bout of constipation. please let me know

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Oh Helene...... It is so tough trying to figure this all out! I am exhausted each day from staying up all night reading, reading, reading all these posts! Just so much to comprehend. I was ready to order Bonnie's supplements until I read a post somewhere that said her supplements made her son's tic worse, so I am now back to square one.

 

I have a couple of questions that I can't seem to get answered and hopefully someone reading this can guide me:

 

My son has had tics every day, all day long, 24/7. Aren't tics supposed to "wax and wane"? He has NEVER had even a slight break from the tics. Is this normal? Could this not be TS and be some type of allergic response to something?

 

Once he was bumped up in dosage on the Prozac, he immediately started the eye rolling and started walking pidgeon-toed. Could this be from the Prozac? I immediately weaned him from it and am now so sad that I ever let him take that

%$@# !!! He looks so pitiful with his eyes rolling back into his head. My heart just hurts so much for him.

 

With all the talk about being allergic to this and that......could the tics that our kids experience actually be related to the food, environment and NOT TS???

 

My son was diagnosed in November with TS and I just wonder if it couldn't actually be something else. He has had eye twitching and nose scrunching for well over a year. For just about a month during that time was he sniffing. I am so confused as to what to do. There are SO MANY types of Magnesium, Calcium and Zinc with "this and that" and so many dosages...I am just about ready to throw my hands up and say I give up! I need someone to hold me hand and lead me as to what to do next. I promised my little man that I would do my best to try and fix him and I don't want to go back on my word. Most of you are so experienced in this. Us "newbies" are really having a tough time trying to figure out what to buy, how much to get, what dosages, which test to do next, etc. I am just worn out from trying to figure everything out.

 

If someone could answer my questions above, that would at least be a start. Next, I need a "grocery list" of what exactly to buy for him - 10 years old, 65 pounds (about). I went to GNC and talked to them about the Magnesium with Taurate and they were clueless.

 

I am so grateful for all of you Moms and Dads out there who are willing to lead us along on our journey down this unwanted road. It certainly makes life more bearable. Thank you to you all........ :wub:

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