Supplements for TS

[Guest marikatsumi]

My daughter, 8 years old, has had Tourette Syndrome for 2 years. She's been doing head-shaking and hand movements for a while. They haven't been too disruptive, but they can be quite severe some days. We started seeing an environmental doctor near us and he did an autonomic neurvous system test on her and she had her blood work done. There wasn't any significant deficiency in the results. But the doctor thought my daughter's parasympathetic was predominant and her sympathetic was overused. Has anyone done this type of testing before?

 

So, the doctor recommends supplement treatment such as:

B12/2mg, Folic acid/5mg, B6/50mgx2, Magnesium/500mg, Biotin/500mcg, Calcium/1000mg, Fish oil/1gmx2, Inositol/6gmx2, and Iron/50mg

 

I'm very cautious about the possibility of supplement overdose after studying nutrition(I'm taking a nutrition course and the textbook used really scares the readers with the toxicity of supplement overdose). The amount of B12 and Folic acid recommended seems a lot compared to the tolerable upper intake for 8 year-old. My daughter has had some terrible allergic reactions to some medicines(antibiotics) and even a homeopathic medicine(tongue, lip and eyelid swelling-she ended up in an emergency room because her swollen tongue was blocking her airway.) I just don't know how she would react to even a slightest high intake of certain supplement.

 

Would anybody help me on this issue? I may be too worried about an overdose issue. But I just want to be safe than sorry.

 

Oh, my daugher is 3 quarter Asian(so almost all Asian). Seems like Asians have less tolerancy for some medicines including anesthetics. I've known quite a few Asians with experiences in which the same dose affect more Asians than Caucasions. This doesn't seem to be of much discussion in general but I need to take it into consideration.

 

I'd appreciate any input. Thank you.

 

Mari

[Claire]

Mari,

 

Wow, that is a lot of vitamin power. Your EM doctor is very aggressive in treatments. I tend to be much more conservative, though I am not a medical professional by any stretch. Our DAN doctor was also much more conservative than that. Usually I suggest that people supplement under a doctor's supervision, but it sounds like you and I both have experience with doctor's supplementing more than our gut says is okay. My vote: Go with your gut if it is more conservative than your doctor. Especially since your son seems to react easily to medications in general.

 

Here is what Spectracell lab listed as daily recommendations for children 6-10 with KNOWN deficiencies in those vitamins: Note mcg is micrograms vs mg millograms

 

B12 1000 mcg

Folic acid 800 mcg

B6 25 mg

Magnesium 200 mg

Biotin 1000 mg

Calcium 500 mg

Inositol 1000 mg

 

They have no listing for Iron or Fishoil, but the prevailing wisdom here is to not overdo iron unless there is a known deficiency. I believe 18 mg is the normal daily requirement, assuming they don't also get fortified cereals, etc..

 

Some kids are definitely more sensitive to supplements (Jean's son seemed to be also). Whatever you decide to do, I would start with one vitamin and watch for 3 days before adding another. Also, keep in mind that the B's tend to work in balance with eachother. For example B6 needs B2. Also, I don't see anything in the way of antioxidants. At least perhaps take Marie's advice and juice some veggies to get enough vitamin A and vitamin C.

 

I don't know the tests you refer to, maybe someone else does. What vitamin deficiency tests did he run?

 

Your EM doctor seems to review different things and approach it differently from some of the others here. That is not a judgement, as there is no clear right path right now, it is just that we may have less experience in that area.

 

Good luck.

Claire

[Chemar]

hello Mari

 

I think you are very wise to be cautious!

 

when we started my son on his supplement program our very wise physicians recommended starting at the minimum dose and gradually working up as needed, because the dose that works for some is often much lower than that which others need.

 

also, a word of caution about fishoil. Omega 3 fatty acids are a very important part of the diet, but some people, especially those with Tourette Syndrome seem to be very sensitive to the fishoil supplements, and can actually tic more when taking them. My son is one such and so we give him omega 3 & 6(flaxseed and borage oil) and omega9(evening primrose oil) as supplements, and get his extra marine origin omega3 by eating a lot of salmon.

[Guest marikatsumi]

Claire,

 

Thank you so much for your response! I feel relieved to hear that you also think the treatment recommended was aggressive. Yes, the way the EM doctor we started seeing approaches my daughter's TS sounds different from what I read on this forum and Latittude. But there aren't many EM in Maryland and none in Virginia. Do you or anybody know other places to look for EM or other specialists who treat TS children with ACN way?

 

I see what you mean by our EM doctor being aggressive by comparing the dosage you have posted and ours. Yes, I'll trust my guts. I'll start Bs only for a few days and see. I have started giving my daugher a lot more organic fruits, nuts, and more fish. I'll try the vegie juice you mentioned.

 

Again, I really appreciate your suggestions! I'm new on this forum. I've been visiting the site for a while. It's been inspiring and assuring to read the posts. Thank you!

 

Mari

[Guest marikatsumi]

Cheri,

 

Thanks for your response. Thanks for the info. about fish oil. I'll keep it in mind. I think I'll do some more research and start supplements on my daugher with minimum dose and one kind at a time.

 

Claire,

 

I reread some of your previous postings and found the DAN site. I got some names of the practioners in my area. Thanks!

 

Mari

[Spring]

Hi Mari,

 

As Claire mentioned, my son seems sensitive to most of supplements except Vitamin C and E. B-complex and fish oil will set him off. I had to start with very low dosage initially. Currently, we are having difficult time to supplement the Glutathione lotion. I suggest not giving all the supplement at the same time. You may want to introduce one at a time with minimum dose as Cheri noted. If there is any reaction, you can easily rule out the possible causes.

 

As a side note (re: fish), you need to be cautions about types of fish to eat, i.e., make sure not to eat those with mercury contaminated.

 

Jean

[Andy]

I believe that supplements should be based upon testing. I do think that anyone who does supplement should consider their child's body weight more than their child's age. I am a big advocate of supplements, however, one should be careful and read the label carefully for not only the supplement but also the filler/other ingredients. I find that this website is a great source of information inregards to supplements and products of.

[Claire]

Mari,

 

I am glad you found the DAN list (the site editor posted it at the top of this thread). They are usually conservative in supplements and definitely meticulous in blood, stool and urine testing. My personal view is to make sure you get an MD, as some of the others may be quite knowledgeable, but they cannot legally order many of the tests. Like Andy, I think that treatments should be customized based on testing.

 

Jean gave good advice about fish and mercury, since mercury/metals seem to be a common problem here.

 

Andy's comment on fillers is key--good to get supplements without irritating fillers.

 

Claire

[quan_daniel]

Chemar,and others

what do u think about flaxseed oil cause maile prostate cancer.

 

http://www.cancerrd.com/FAQs/FAQ67.htm

 

I want to give fish oil to my child now after reading this article and many more like it.

 

I also read that fish oil seems to cause more tics.

 

I am so confused.

 

I hope we can hear from chemar, claire,andy,etc...again..u guys are needed here

to guide us.

 

thanks

 

hello Mari

 

I think you are very wise to be cautious!

 

when we started my son on his supplement program our very wise physicians recommended starting at the minimum dose and gradually working up as needed, because the dose that works for some is often much lower than that which others need.

 

also, a word of caution about fishoil. Omega 3 fatty acids are a very important part of the diet, but some people, especially those with Tourette Syndrome seem to be very sensitive to the fishoil supplements, and can actually tic more when taking them. My son is one such and so we give him omega 6(flaxseed and borage oil) and omega9(evening primrose oil) as supplements, and get his omega3 by eating a lot of salmon.

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[Chemar]

hello daniel

 

that article does NOT say that flaxseed oil causes prostate cancer. It says that a greater incidence of prostate cancer was found in men with a high ALA intake FROM BEEF

 

Flaxseed is high in ALA, but it is a different form of ALA than found in beef. All that that article is suggesting is that men with prostate cancer should avoid flaxseed oil because of it's high ALA content until further research is done on the link, if any, between ALA and prostate cancer. I stress again, it was ALA from BEEF, not flaxseed that was found to be high in men with prostate cancer!!

 

Dr Andrew Weil also recommends that the best source of omega 3 is freshly ground flaxseed, rather than flaxseed oil

[quan_daniel]

Cheri,

Thanks for just replying.

It is almost like I want a prize for hearing from you guys again.

Your presence on this board is a soothing affect.

 

Cheri,

can you tell us how much flaxseed oil to give to a child of 6 and 40 lbs.

 

The american heart association says no more then 3 g of omega 3 and that

translate to roughly .2 teaspoon which is no a lot per day.

 

Should I stay on flaxseed oil amidst the controversy(I know u strongly don't believe it).

 

Should I try fish oil? I know Giselle recommends Nordic Natural fish oil.

Do u recommend any brand? Again what is the general recommended dosage.

 

My child is on pribiotic for almost 3 weeks. I am thinking of stopping it at one month.

 

It is not because i think that it is not helping, I think it is helping but again safety issues.

 

how long on one thing is a tough thing to ascertain.

 

thanks

 

 

 

hello daniel

 

that article does NOT say that flaxseed oil causes prostate cancer. It says that a  greater incidence of prostate cancer was found in men with a high ALA intake FROM BEEF

 

Flaxseed is high in ALA, but it is a different form of ALA than found in beef. All that that article is suggesting is that men with prostate cancer should avoid flaxseed oil because of it's high ALA content until further research is done on the link, if any, between ALA and prostate cancer. I stress again, it was ALA from BEEF, not flaxseed that was found to be high in men with prostate cancer!!

 

Dr Andrew Weil also recommends that the best source of omega 3 is freshly ground flaxseed, rather than flaxseed oil

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[Chemar]

Hi Daniel

 

why do you feel there are safety issues with the proBiotic you are giving your son??

Probiotics are IMO very good for us, especially in this modern world where there is a continual onslought against the natural and good biotics in our bodies.

 

I have also heard only good things about Nordic Naturals, and this is the EFA supp I would recommend, although we dont personally use it as my son has increased tics from all fish oils and gets his marine lipids by eating salmon (I only buy it from WholeFoods to ensure purity)

http://www.kirkmanlabs.com/products/fatty_...90_Spec821.html

 

Our complete omega supplements come from a combination of flaxseed, borage and evening primrose oil, with oleic acid. This provides omega 3,6 & 9 for balanced health. Black current oil is also a good source of EFA

 

As to doseage, this honestly needs to be recommended by a physician or as per the label instructions.

 

[kim]

Could anyone tell me if they have ever tried the Vance Darifree product Kirkman's sells? Still struggling to get youngest off dairy.

 

Kim

[quan_daniel]

Cheri,kim,

 

before 2 days ago, my child was a dream..

satuday came..

he played really late , tired..

I gave him 1/4 teaspoon flaxseed oil instead of 1 teaspoon.

My wife later told me that she did not give claritin(allergy medication).

 

Today, the tics are little better..about 30% better..

 

Tonight I gave him the full teaspoon again.

 

My gut feeling is the combination of tireness and stopping of claritin that caused this

and not the flaxseed oil.

 

Claritin impedes histamine, histamine is a neurotransmitter..and known to caused tics..

allergy season comes kids tic more..

 

but the underlying issue is the overall immune system..

 

I pushed on the swing today..he was maybe 3 feet of the ground ..he started to cover his eyes..saying his eyes tiggles..

 

A plane flew up..and says it is too loud and scares him..

 

he again had anxiety tonight..and shook the whole body for a 3 to 5 seconds period ..

 

this all sounds like yeast/bad bacteria overgrowth..causing these tigglish..sensitivity..anxiety..

 

Cheri..has your kids tried enzymes..

 

have your kids tried a special diet..?

 

I wish We can hear from Andy and Claire again..

 

to see how they are doing..

 

so is heather

 

thanks

[Chemar]

hi Daniel

 

yes, my son used enzymes and still maintains a special diet, tho he can eat everything other than artificial foods

 

Reading your post also makes me think that your son has SENSORY INTEGRATION DYSFUNCTION, which is very common in kids with neurological issues, where they are hypersensitive to touch, taste, smell, sights and sounds.

 

Occupational Therapy is very helpful with that and there is an excellent book about it too by Carol Kranowitz called "The Out of Sync Child"