The Treatments that have Helped My Son

[Spartan32]

Regarding your last update in September of 2010. Has your son stopped all magnesium supplements? I see that he was still using EPSOM salt baths and I know that is a way to get magnesium. I saw in the beginning of the thread you mentioned he used to go to an NUCCA chiropractor. I have been seeing one for about 2 months now and have not noticed any changes for my head tic. Was his experience more of an instant relief thing or did it take a while? I am deciding if I want to continue spending money for adjustments as it is getting very costly and time consuming driving 50 miles there and back twice a week.

 

Also, how is your son doing now?

[Chemar]

Hi

my son only has the magnesium that he gets naturally from food, along with his Thorne Research Multi & regular Epsom baths (2-3 a week)

 

If you don't feel that the NUCCA is helping then it seems a waste of your time and money to continue. My son saw the chiro to help with the fact that he kept putting his neck etc out with tics, not as a cure for the tics ie the chiro helped allevate pain, discomfort and misalignment caused by the tics, and often alleviating that helped calm the tics some.

 

My son's TS is really not much of a bother to him anymore, He is now 23yo. Some minor tics from time to time

[technodad]

Hello

yes, it can be very overwhelming when one starts to learn about all the alternative ways to help treat TS and tics.

 

The best way is to take one step at a time.

 

Try to find an Integrative doctor or a naturopath who can guide you, especially as your child is on medications.

 

I am not sure if you have noticed but most here have found that in addition to cleaning up the diet, MAGNESIUM seems to be very helpful in reducing tics.

Most people here use the Natural Calm ionic magnesium citrate mixed into a drink, as well as the epsom salts baths

 

I hope you find a good doctor to guide you

 

I would also suggest you start a new thread here about your child, as then more of our other members may respond with their experiences as well

 

all the best

 

What kind of Magnesium? Can you buy it at Walmart? And how much is okay to give to a 6 year old?

[Chemar]

Hello

most magnesium is ok unless it is magnesium oxide (which is sadly the one put in many supplements..) Mag oxide is very poorly absorbed and a total waste of money!

If the child has Tourette Syndrome, then often magnesium taurate is good because it provides the benefits of both magnesium and taurine, both of which are known to reduce TS tics. If the tics are due to another cause, then it is best to try to find out what is causing the tics.

 

I am not sure what kinds of magnesium walmart sells. You would need to check the dose guidelines for a child as it is also dependent on their weight. When my son was 10, it was recommended he take 300mg a day

[EdithHowe]

How did you find your Physician? I am not sure where to look to find a good doctor. Can you recommend anyone? Thank you. Edy Howe ehphd@comcast.net.

[Chemar]

Hi

Best I can suggest is that you Google search for Integrative or Environmental physicians in your area, or if you are still looking for a homeopath, search that as well. Some people also like the DAN doctors because althoutnthey are Autism specialists, they are also up on a lot of the other integrative treatments.

Then call the offices and ask lots of questions first to be sure this is the physician you want to see.

 

We have a pinned thread at the top of this forum for Finding Medical Help but it may be a bit outdated by now.

 

ps you may want to edit out your email as you could end up getting a lot of spam by posting it on an open forum!

[JosyJoy]

Hi Chemar,

 

You mentioned about St Johns Wort (for OCD). I am looking for something which can suppress his OCD but won't trigger his tics or make him more irritable.

 

My son is very high on serotonin. He has so full of obsessive thoughts recently especially when I introduce new food or new medicine or Craniosacral Therapy, or even starting homeopathic or any new things which go into his mouth. His obsessive thoughts can include keep complaining people who are bear feet and walking around in house or putting bear feet on chair or sofa, obsessively tickle people feet when he sees people bear feet, obsessively saying some words or sentences which I asked him not to say because of impolite, and even more which is I think is serious.

 

He is taking Bontech multivitamin with 50mg inositol in it, 60 B probiotic, 1000mg taurine, and homeopathic (911 stress control, which seems to reduce his eyes and vocal tics but elevate his OCD). Can he take St. John Wort with those without causing any side effect? If yes, which brand would you recommend? What dosage for 10 yrs old? Will it elevate his serotonin. If not, what other recommendation you think would be good for him based on the describption above.

 

Thank you very much for any advice.

 

JJ

[Chemar]

Hi JJ

to have OCD and high serotonin at the same time is unusual I think!? including Tourettic OCD

All of the OCD supplements I mention elevate serotonin as usually it is low in OCD. St John's Wort does also increase serotonin.

 

You may want to consider Cognitive Behavioral Therapy (CBT) for the OCD?

[Chemar]

Bumping this old thread of mine up due to PM requests.

Just updating too that my son is now in his early 30s and doing very well. He still maintains healthy diet and environmental habits, and takes only a few specific nutritional supplements that keep both the TS tic & Crohn's under control. He also avoids the things that he knows can trigger tics, and has found that as he maintains an anti-inflammatory diet for the Crohn's Disease, so that also proves very helpful for tics. He still knows without a shadow of doubt that a healthy immune system and avoidance of tic triggers as much as possible is key.

His worst tics really were in his preteen to teen years and once he entered his 20s, although the TS remained, yet the tics were minor and much easier to keep subdued. Most of the people he encounters either at work or socially have no idea he has TS, unless he chooses to tell them.

 

[Chemar]

Updating here that I found an old archive of Bonnie Grimaldi's original treatment protocol for anyone interested:

https://www.oocities.org/torcha.geo/ts_main_bonnie_sup.html

[MLee]

Hi Chemar,

Thanks for this! When you click on the link it says not found. Can you copy/paste it?

[Chemar]

Hi MLee

It takes a very long time to load but it still loads up for me? It's an archived page.

I just copied it so will paste it here for future reference too Again the link to the archived page is https://www.oocities.org/torcha.geo/ts_main_bonnie_sup.html

Quote

This information was last updated on 12/16/1999.

Bonnie's original of this information is available at http://www.BonnieGr.com

Make sure that the vitamins are naturally coated, and that no sugar, preservatives, artificial colors or flavors, chemical solvents, or specific things that you may be allergic to are on the label. "USP" on the label is preferred.

The following recommendations are for those 10 yrs to adult (children 6 to 10 should follow the dosages in brackets), who have normal, healthy liver, gallbladder, kidney and heart functions and are not pregnant or nursing, or have active peptic ulcers. Always consult your physician before taking any supplements to be sure. DISCLAIMER: This approach may not work for everyone.

In the morning:

1. Lecithin: 1200 mg granules (1 to 2 tablespoons) or gel cap
2. Antioxidants
   • Beta Carotene: 10,000 I.U. (optional)
   • Vitamin E: 200 I.U. [200 I.U. for children 6-10]
   • Vitamin C : 500 mg
   • Zinc: 30 mg
   • Selenium: 15 mcg (optional)
   • Coenzyme: Q10 30 mg (optional)
   • Glutathione (reduced): 25 mg
3. Vitamin B complex capsule (B50 - 11 B factors) (For under 10 yrs use B25)
   • Vitamin B1 (thiamine): 50 mg
   • Vitamin B2 (riboflavin): 50 mg
   • Vitamin B6 (pyridoxine HCl): 50 mg
   • Vitamin B12 (Cyanocobalamin): 50 mcg
   • Biotin: 100 mcg
   • Pantothenic Acid: 50 mg
   • Folic Acid: 50 mcg to 400 mcg
   • Niacinamide: 50 mg
   • Inositol: 50 mg
   • PABA: 50 mg
   • Choline: 50 mg
4. NO FLUSH niacin (inositol nicotinate): 250 mg (capsule is best) [children 6 to 10 should 125 mg.]
5. Solary Grapenol Grapeseed Extract: 1 mg/pound body weight
6. DHA: 500 mg

Afternoon:

1. Niacin: 50 mg of tablets (regular, since no-flush doesn't come in 50 mg doses) [children 6 to 10 should cut this tablet in 1/2 for 25 mg]
   • Niacin may be taken three times during the day as needed for tics - decrease dose if flushing occurs. Flushing feels like a sunburn and may itch or it may be a mild rash. This lasts only 15 minutes and is not an allergic reaction and is not harmful. DO NOT EXCEED 500 MG/DAY (250 MG/DAY FOR CHILDREN 6 TO 10) OF TOTAL NIACIN (NO-FLUSH NIACIN, NIACINAMIDE IN B COMPLEX, AND REGULAR NIACIN). More can be taken with a doctor's supervision - my son is supervised and takes 1600 mg of no-flush niacin a day.

Just before bed:

1. Amino Acid Chelated Calcium-Magnesium tablets
   • Calcium: 780 mg
   • Magnesium: 468 mg
   • (6 tablets of Schiff brand provides this)
2. Vitamin B: complex capsule (B50 and for under 10 yrs. B25) as above.
3. Taurine: 500 mg

I give B complex for a balance of the B vitamins, so that a deficiency in one doesn't occur.

Foods that contain tyramine should be avoided if increasing symptoms- they are chocolate (large quantities), aged cheese, soy sauce, red wine, raisins, canned fish, pickled herring, chicken livers, cured meats, and most alcoholic beverages. They interfere with MAO inhibitors, if you are taking this kind of antidepressant, with severe consequences to your health -hypertensive crisis. Tyramine is a monoamine which is eliminated by monoamine oxidase (MAO). If MAO is inhibited, then tyramine is not broken down, releasing stores of norepinephrine, which have been found to be increased in TS in several studies. Tyramine also is an inhibitor of pyridoxal kinase, which decreases the active form of vitamin B6 in the body.

Go to an allergist and get tested for food allergies. Eliminate these foods from your diet to see if this helps, or try an elimination diet without the allergy testing. (Of course, get tested for respiratory allergies also!). Recent studies have shown that food allergies or sensitivites causes hyperactivity in the majority of cases. The allergy connection is also implicated in TS.

Cut out aspartame (NutraSweet). The high phenylalanine blocks other "Large Neutral Amino Acids", such as valine, leucine, isoleucine, tryptophan, tyrosine, histidine, and methionine from entering the brain. Aspartic acid, which is in aspartame, is an excitatory amino acid, which can act as a false transmitter, substituting for glutamic acid (glutamate). MSG (monosodium glutamate) should be avoided, also because of its glutamate portion, which excites neurons. Avoid caramel color, vanillin and yellow #5 (tartrazine). These inhibibit B6 activity.

Avoid pseudephedrine (Sudafed) containing decongestants and antihistamines. Eliminate other dyes (especially azo dyes) that may cause adverse reactions - especially red dye # 40. Caffeine should be eliminated. It is a methylated xanthine stimulant of the catecholamines, which are already stimulated in TS.

Essential fatty acids can be found in DHA and trout, crappie, haddock, sea bass, salmon, cod, and/or cold water halibut (the fatty fish).

Don't ingest many foods high in sugar. The best diet approach may be a semi vegetarian diet, which provides a balance of carbohydrates and protein, recognizing that adolescents need more protein than adults.

For information about my hypothesis and why I have chosen these supplements for my program please see: Bonnie Grimaldi: Hypothesis.

Bonnie Grimaldi, BSMT (ASCP)
Medical Technologist, Laboratory
Mt. Carmel East Medical Center
6001 E. Broad St.
Columbus, Ohio  43213
(614) 234-6700     
 
Bachelor of Science in Medical Technology from the University
   of Akron  in Akron, Ohio  Dec 1977
Graduate courses in Biochemistry at the University of Akron
    towards a Master's degree in Biology
Certified by the American Society for Clinical Pathologists
   MT(ASCP) # 115060 Aug. 1977.

Bonnie can be reached by e-mail.
For questions about this material or Tourette's Syndrome in general, please join us in the alt.support.tourette newsgroup.

Discalimer: All of the above is the result of Bonnie's research. I take no responsibility for it's accuracy. Please, before beginning any program of this sort, consult with your physician.

 

---

 

[MLee]

Thanks!

[Chemar]

I am responding to a message asking me about my son's progress- so am bumping this old thread back up as it gives a lot of our journey's details

He continues to thrive in adulthood, has his own place, a good job and good friends.

Hoping anyone currently going through these challenges will find hope and encouragement here ♥ NEVER give up hope!