Son with TS/looking for advice

[Gina]

My son is 8 yrs old and was diagnosed with TS almost 2 yrs ago. I decided from the beginning not to medicate. I have changed his diet to eleminate certain things which were tough in the begining but fine now. The past month his tics seem to be getting worse. He has mostly head, neck and facial tics but a new one started up a few days ago. He shakes his whole body (much like you or I would do when we get a chill) He said he feels like electricity is going through his body. Anyone ever deal with a tic like that?

 

Also I have been looking into the vitamins from Bonnie Grimaldi (bontech supplements). As I investigated further I realized that it was expected for my son to take 18 pills a day. That triggers some questioning in my head about these vitamins. It seems to be a lot of pills for such a little kid. Not to mention kind of costly. Anyone have any other suggestions?

 

I have had no luck so far with finding a Dr. that supports vitamine instead of medication. But I am not giving up. It is just frustrating to have to play Dr. and try to figure this all out. It seem everytime there is a idea that sounds good there is always a brick wall at the end... (Just Venting)

 

Thank You

[Chemar]

Hi and welcome

you have come to the right place to get lots of great advice re alternative treatments.

Congratulations on avoiding prscription medication.......from bitter experience I can tell you that I wish we had known about supplemental treatment four years ago.....my son was on meds for a year and they produced very bad side effects and his tics and OCD actually got worse!

 

Although I follow Bonnie's guidelines re supplements, I do not use the Bontech products...primarily because, at my son's weight (14yo 145lb) he would need so many per day as to make the cost prohibitive for me on my very tight budget.

 

HOWEVER, I must qualify this by saying that I have the greatest respect for Bonnie and have only heard the most glowing reports from those that do use her products. They are pure and they are ideally formulated for TS.

Her research and her willingness to share her formulae have been truly life-changing for my son.

 

Because of my budget restraints, and also because my son has always had more problems from his OCD related symptoms interacting with his tics, I have formulated my own program to meet his needs...here is a quote from a previopus post of mine, discussing our program for my son

 

Below is the supplement regimin we have been successfully using for over 2 years now

 

The combinations that I give come close to the overall doses recommended in Bonnie's original research

 

http://www.geocities.com/Area51/5207/ts_ma...bonnie_sup.html

 

and I have added some other things that she also now recommends in her new program http://www.BonnieGr.com ,

 

and also ones that I have determined to be good for my son from my own research and enquiries

 

I give a basic morning group of

 

1 multivitamin/mineral (the multi has all the good antioxidants etc, and is high in the B group vits, and I add a B1)

1 combo flax/borage/omega-3,6,9 oil

1 Lecithin

1 combo cal/mag/zinc

1 taurine

2 ginko biloba(for ADD)

1 St Johns Wort (for OCD)

1 l-Carnitine

1 Royal Jelly

1 GABA (for OCD etc)

 

 

in the evening he gets

 

1 5HTP (for OCD-)

1 Inositol(for OCD-)

1 Evening Primrose Oil

1 Methionine

1 coQ10

1 GrapeSeed extract

1 Bilberry(for vision)

 

(The doseage of the supps depends on age and body weight so I have not included it here as my son is 14yo and >150lb)

 

We also try to watch the diet VERY carefully so he eats healthy good stuff, no artificial colors, flavors or sweeteners and NO HIGH FRUCTOSE CORN SYRUP, no caffeine and mimimal sugar(we only use pure Turbinado sugar) he likes pure dark chocolate, and is allowed some of that, and I try to make most things from scratch.

 

Other complementary treatments that have been helpful to my son are:

 

accupuncture

 

biofeedback (NOT neurofeedback)

 

yeast (candida) control, along with other parasite elimination

 

detoxification and heavy metal elimination

 

environmental modifications to eliminate as much dustmite, mold, pesticides, cleaning chemicals, chlorine and other things that seem to trigger tics for him.

 

Most of all we have found that a positive attitude and MUCH prayer have enabled all of us to truly face and overcome the challenges that TS and it's comorbid conditions present.

 

I hope this is helpful to you.

[Sheila]

Gina--has your child had a recent neurological workup to define what is going on? The electrical impulse could possibly be some type of seizure. Seizures can have many causes and treatments, and sometimes there are seizures without EEG abnormalities. A seizure problem isn't necessarily something to be overly worried about because treatments are getting better all the time, but it is something that requires seeing a physician.

 

Many of the approaches you have been reading about on this forum can help certain kinds of seizures because we know that diet, nutrition, and chemical exposures can all affect them. But there are many times where standard medication is required--and an evaluation by a specialist would always be a good idea. Seizures can also cause tic movements, in addition to any number of sensory feelings, including an electrical buzz or discharge going through the body. And it's possible to have a tic disorder with seizure activity as well--two different issues going on.

 

I'm not trying to worry you, just wanting you to find the source of the problem so it can be addressed.

 

Please see this link for an overview:

 

http://www.aesnet.org/pdf/C1-10.pdf

 

Maybe you have seen a specialist for this? Best wishes, Sheila

[Guest Guest]

Hi

 

How can one distinguish TS from Seizures?? I have heard that EEG's, etc are not 100 percent accurate in diagnosing siezures. In that case, how can anyone be sure that the child has TS and not seizures? Are there any specific kind of tics which suggest seizures. (like any particular vocal or motor or the frequency as such)

 

I read the link provided by Dr Sheila and I am still not clear about the distinguishing factor as such.

 

thanks in advance for your responses.

[Sheila]

I'm going to assume the last comment came from Gina. . .

 

This is what neurologists do day in and day out--determine what the abnormalities in the brain are. They can make a seizure diagnosis without eeg abnormalities in some cases based on clinical history, though that is not necessarily the norm. My suggestion is simply that you take your son to a neurologist and seek a diagnosis from an expert.

 

If you do find there is a seizure disorder, then that opens up a whole new area of exploration--including natural approaches.

 

Responses on forums--and Chemar answered your questions very well--are certainly helpful to some people, which is why forums are a great thing. As she points out however, this is what met her son's needs. I believe I can speak for Chemar (having followed her carefully worded comments for some time) and certainly want to express for myself, that we would not presume to be able to tell you what is going on with your child.

 

The one disadvantage usually stated by conventional folks about alternative approaches--which are of course generally safer than many drug therapies--is that they can delay needed treatment. If someone has a mild to moderate tic disorder, that's not an issue--most doctors and patients aren't interested in medication anyway. But if--and I say IF--there is a seizure disorder, that should immediately be discussed with a physician. It's not something to try to self-diagnose. I'm not a doctor, but even if I were, I would be negligent if I did not make this suggestion to you. I hope you understand where I'm coming from on this? Sheila

[Chemar]

I am so greatful that you have answered here Sheila, as I must confess I was only answering the questions with regard to Gina's comments re vitamins and did not even pay attention to the bit that related to the tics being allover shaking!

 

I have said over and over, and cannot stress enough, how important it is to work with a qualified physician in all things health related....

 

Also, just to make sure that my feelings re medications are understood in context too.......I am NOT anti medication per se........medicine can and does save lives and make people better etc every minute of every day.......my comments re meds are related ONLY to OUR experience with neuroleptic and anti-depressant drugs, which were given to my son without any warnings of the potentially dangerous side effects.

 

When it comes to illness, infection and very definitely, seizures....one should IMMEDIATELY consult with a qualified physician and not hesitate to follow their instructions.

 

As Sheila has wisely reminded us, the sharing and caring that we do here on a Forum in NO WAY should replace or be considered as qualified medical advice. It is simply a way of communicating our own experiences and the knowledge and info that we have gathered.

[Guest Ronna]

I just wnted to comment on the question re: bonnie's supplements. A year ago I started giving my son bonnie's vitamins. I did see alot of improvement quite quickly. My son has a complicated history and is a PANDAS kid and was on prophylactic antibiotics at the time. My son had a big setback about a month or two after starting Bonnie's vitamins.

 

To make a long story short we ended up over the summer and into the fall discontinuing all of my son's meds (Orap and antibiotics etc.) and started from scratch. I would not recommend this be done by a parent alone. We had the help of our pediatrician and a naturopath doctor. We found that my son was reacting to alot of foods with dairy being the worst long with eggs, chocolate and corn. We re-introduced vitamins slowly. For the last few months I added vitamins one at a time to make sure they did not have a negative effect.

 

Recently, I have switched back to Bonnie's vitamins for a few reasons...

 

!. I find the price to be very reasonable in comparison to buying all of the supplements one at a time.

2. They are very convenient for example, I don't run out of a certain vitamin one day and have to run to the health food store.

3. I know Bonnie has thoroughly researched the amounts of each vitamins and they are given in the right combination. I often worried when I was giving them myself that I was not giving the right amounts and in the right combination. For example, B6 and zinc, calcium and Mg etc.

4. I find it is a good base to start with and if I want to add higher amounts of say for example B6 then I can or I can add additional antioxidants etc.

5. Bonnie's vitamins were easy to order online.

6. Her supplements contain Mg taurate rather then oxide. Mg taurate is hard to find in Canada.

7. My son takes about 14 capsules per day. I found with the individual supplements he would complain because some came in tablet form rather than capsules or some were too big etc. Bonnie's vitamins are all the same and he is use to swallowing them.

8. I split the pills up into 3 times per day and he has no problem sawllowing the 4-5 pills I give him each time (in fact he is so good at swallowing pills I have to talk him out of swallowing all 5 at the same time...unlike me who can barely chug down an advil:)).

9. When I am working I find my husband can easily figure out what to give my son. For example, all I have to do is phone home and tell my husband give him 5 pills now. Seriously, I can label all of the supplements and put them in baggies etc. and my husband still manages to mess up but if I say "reach in and give him 5 pills"...he manages to do it!

10. I have seen an improvemnt since we started back on Bonnie's supplements.

 

My naturopath doctor has reviewed Bonnie's vitamins and thinks that it is a good product.

 

Take Care,

Ronna

[Guest Ronna]

Sorry, I do not know how to edit a post here. I just wanted to add that our son's setback last spring was not as a result of bonnie's vitamins but because he developed another strep infection.

 

Ronna

[Guest GL&Lmom]

To Ronna and Chemar

 

Thank-you, thank-you, thank-you for such detailed explanations of your suppliment experience. I just posted a question about this on the other part of this forum. I am going to print out both of your responses to add to my ever growing folder.

 

One other question. Did you suspect food sensitivities and yeast problems before having your kids tested for these? I haven't really seen any evidence of allergy or stomach discomfort, so I really don't know if dietary changes are necessary. I did get a blood test for delayed food allergy just in case, but the results haven't come back. My intuition tells me that my son's problem is going to be mercury or an imbalance of amino acids or vitamin deficiency. So many avenues to explore and research. I don't know how all the people on this forum keep it all straight.

 

Anyway, thanks again for all the posts.

[Guest Ronna]

I hear you about how much there is to learn. I am starting to feel like I should get a degree in something.

 

I am not sure how to get across in a post the process we went through to finally figuring out Kurt's food sensitivities etc. We have not had any testing done. We have done a food elimination diet and the yeast thing we just figured was a problem given that my son was on antibiotics for a year. Although we will probably be doing some testing for yeast in the next week or so.

 

Last fall I finally put the pieces together when I noticed my son ticcing more right after having some chocolate ice cream. I started learning about allergies and alot of things started to make sense for us. Dairy was an easy thing to pinpoint because his reaction was just so intense. Eggs and chocolate were pretty easy to see also. Where the elimination diet was crucial was that we were VERY surprised that corn was a problem. We do think Kurt had a predispostion to these food sensitivities but they really exploded due to the year of prophylactic antibiotics.

 

I guess my feeling on it is that you can do all of the tests you want but really I think the only true way to see if your child reacts to something is to do an elimination diet. It is kind of hard and it is a pain in the butt but I cannot begin to express how beneficial it has been.

 

Doris Rapp's book, "Is this your child" is a very good book to start with.

 

good luck and let me know if you have any questions.

 

Ronna

[Guest GL&L-mom]

Ronna,

 

 

Thanks for the good advice. I actually already have the Doris Rapp book you suggested. I also just order Children With Starving Brains by Jacqueline McCandless. There's so much information, we are trying to determine the best place to start. Because these kind of problems do run in the family, we aren't optimistic about completely alleviating the symptoms, but just want to manage them without drugs.

 

Good luck to you.

[Claire]

GL&L,

 

It is difficult to ID the underlying causes without testing--more like systematic trial and error. This was why we got a DAN doctor. They have built up a body of knowledge of the most common underlying health issues that when addressed, can substantially minimize neurological symptoms such as tics, ocd symptoms, aspergers, autism and I think even ADHD. Since I work full-time (though from my home office), I didn't have the time for the expert research that people here have done--I did a lot, but there are lots of different approaches just for fatty acids alone. There are so many factors and my son didn't like a trial and error approach.

 

 

Yeas, heavy metals, food allergies, vitamin/antioxident deficiencies, gluten, casein issues are just a few of these. Most of the tests (other than the blood tests) are non-invasive. ie there is a protocol that they use. Sure enough, they uncovered some issues, and we still have some more tests coming.

 

I suspected wheat allergy and/or candidas because my son craved wheat. I suspected metal toxicity (test coming Monday--we had to stop all vitamins for 4 days before the test) because he said he tasted metal (though I don't even know if there is a correlation there). My doctor suspects metal toxicity because his antioxidants are so low.

 

As for his tics, I noticed they were worse during certain computer games. Amazingly, stopping computer (and unfortunately TV months later as he got more sensitive) completely eliminated them--every once in a while they came back, but upon questioning it always turned out that he had been exposed somewhere else that I wasn't aware of. Lately we watch a full movie (90 minutes) on the LCD monitor 3 times a week with no issues. Daily seems to be a problem.

 

Claire