Please help with Tourettes

[Teena]

Hi,

 

My 19 yr old son suffers from Tourettes and has for the past 10 years. He has motor tics, but the worst are the vocal tics, including coprolalia. His tics can be so loud that is is difficult to even have a conversation with him. He is in college now and works all week to control the tics, so when he comes home on the weekend they are very explosive. It is all so depressing for us and for him. He has been on medication for the last 10 years, including Haldol, Flupenazine, Clondine, Tetrabenazine, Risperdal, Zoloft, and Abilify at one time or another. None of these medications have really ever 'worked'. We have taken him to different Neurologists, but it is all the same thing. The last one just said he didn't know of anything else that could be done. Just try another medication that doesn't work. I have been reading for awhile on vitamins and natural treatments, but just get so confused by all of the overwhelming information. When I ask the Doctors, they don't want to talk about, just say that vitamins won't help. We live in a rural so there are no alternative Doctors in the area. I have read alot about Bonnie's vitamins, but have also read so many people say that they didn't help, and they are so expensive, which I would find a way to get if they worked. Any advice would be greatly appreciated as to which vitamins, supplements to take. And, what about the medication he is currently on? Would I have to take him off of it first, I can get no answer from the Dr.'s about this, like I said, they don't want to talk about alternative treatments. I would give anything to find some relief for my son so that he could have somewhat of a normal life.

 

Thank you.

[Chemar]

Hi and welcome

 

I am very busy at work right now so forgive the short reply.....

 

my son is almost 19yo and was dx with Tourette at age 10

 

we also tried a variety of meds with no real benefit but many bad side effects

 

he has been on a natural plan since 2001 and his tics/OCD etc are so much improved.

I based his plan on Bonnie's original one that she used for her child (long before the Bontech range)

 

here is the basic plan he has been on (it is somewhat modified now as he also has Crohn's disease plus we have found some substitutes etc...will post more on the updates later)

http://www.latitudes.org/forums/index.php?showtopic=687

 

hope that helps a bit. I am sure others will be along soon to share their experiences with you too!

[Teena]

Thank you so much for taking time from your busy day, I appreciate it so much! I was wondering, do you buy all of these vitamins separately? If so, where is the best place you have found? How do you know what the dosage is, do you just go by the dosage on the bottle? I don't know if you can give me any pointers on this, but I am wondering if I have to take him completely off the meds first, or if I can do that slowly while starting these. What did you do with your son?

 

Again, thank you.

[faith]

Hello Teena and welcome

The majority of parents here have children who are younger and so I am guessing that the sooner you get onto the natural path, the better. Would you mind giving us a little info on your son's dietary habits and any other interventions you have tried in the past, such as chiropractic, cognitive behavior therapy, or anything like that, if anything. I would be interested to know what type of foods and drinks your son usually consumed during most of his life. Would you say his diet is relatively healthy, or more the typical american diet, if you know what I mean (fast foods, processed foods, commercial juices and snacks, etc.) Also, does he have any allergies? When you say he "holds it in school during the week", do you mean he is able to control it so it is not noticeable to others and then he lets it out mostly at home?

 

Thanks

Faith

[Chemar]

another quick fly by post

 

I buy most of our supplements online at http://www.iherb.com as they are by far the cheapest even including shipping

 

we use a lot of NOW and Jarrow brands

 

we also get some supps at the local The Vitamin Shoppe store (also online at http://www,vitaminshoppe.com)

[CarolynN]

Hello and welcome!

 

I am so sorry to hear your family is going through such a difficult time. Have hope and realize that there are some answers out there for you. This website has been amazing for me to understand what is going on at the root of my son's tics. My son is now 8 but has had tics since he was 3. We have had him on many different supplements and did a MAJOR overhaul of his diet. We have had great results. You will find from reading so many peoples posts here that diet has sooooooooooo much to do with it. There is absolutely no getting around it. The trick is finding out what the triggers are and one way to do that is by keeping a dietary journal. But of course allergy testing can help.

 

For example we found out that my son is highly sensitive to MSG, Yellow Dye number 5 and 6, Red 40, and High Fructose Corn Syrup. The problem with MSG is it is under so many different names. Here is a posting I did regarding the MSG problem and all of its various names http://www.latitudes.org/forums/index.php?...aded&start= . You will see this in the post but school hot lunches are a source of a lot of MSG. I can absolutely tell you one of the best places to start is by getting all MSG and food chemicals out of the diet. They are no friend to the nervous system and it is like pouring gasoline on a already burning fire.

 

I created a list of foods on another posting that I found my son could eat. Here is the list http://www.latitudes.org/forums/index.php?...;hl=trader+joes .

 

Here is a link regarding my research as to what is actually going on within my son's body regarding why he cannot process certain foods well http://www.latitudes.org/forums/index.php?...mp;hl=sulfation .

 

Here is a link with what has so greatly helped my son regarding N-Acetyl-L-Cysteine and the other is straight potassium bicarbonate (I believe you can only get the potassium bicarbonate through a Naturopathic Doctor. Although I think one person on the forum posted that Alka Selzter Gold has it in it. Anyhow here is the link (by the way this one lists all the supplements I have my son on ) http://www.latitudes.org/forums/index.php?...amp;#entry21736

and http://www.latitudes.org/forums/index.php?...hl=Carolyn%5C.N

 

After you have read the above posts you will see my son is on many different products. By no means could I ever say that these two supplements alone are doing the trick but they have given him GREAT improvement. He is also taking Bonnie's Grimaldi's TS-Plus which has magnesium taurate and high B vitamins. He is also on some others but they are listed in the above postings. Many people have had great success with Bonnie's Grimaldi's TS-Plus. You can read more about the product at her website http://www.bonniegr.com/ .

 

Magnesium and B vitamins are HUGE in terms of what helps people naturally. The TS-Plus product I mentioned is very well balanced with these for someone with tics. In that product is Magnesium Taurate. Magnesium Taurate seems to be a very good source of magnesium. The key to magnesium is you want to take a magnesium that ends in "ate" and not "ide". The "ate" ending is much more absorbable.

 

B6 vitamin is huge in helping. My son takes at least 50 mg a day that is in Bonnie's vitamins. Some people prefer not to do Bonnie's vitamins because they want to see individually how each one of these supplements effect their child or themselves rather then having them all lumped together. I can tell you my son has greatly benefited from them but some, I don't think many, actually see an increase in tics being on the vitamins. But I really do think a greater number of people are helped verses the number of people who see an increase in tics. The other "issue" so to speak with the vitamins is it is A LOT of vitamins to take a day. For my son he is taking 10 of the TS-Plus plus numerous other supplements. So he is so sick of taking the vitamins but he knows he needs to.

 

The other thing to consider is candida. This is an overgrowth of yeast in the intestinal system. This seems to be a pretty common problem for someone with tics. So you might want to do a search on the forum about candida because there have been many postings.

 

Epsom Salts baths are very helpful to those that have tics (2 cups in a nice full tub of water). You can even do this twice a day for around 20 minutes a time.

 

Have you read up about PANDA's on the forum? These are tics that are caused by the Strep virus. Not all people with tics, by any stretch, have PANDA's but there certainly are quite a few that do. You might want to do some reading about the possibility of that being the root of the issue.

 

The other thing to consider is obviously getting the right kind of doctor. One place to start are doctors called DAN doctors. These doctors looks at neurological disorders in a completely different way. They are known mainly for there work with Autism but many with tourettes have used them. They look to find the root of the issue rather then covering up the root with medicine. Here is some information http://autism.about.com/od/alternativetreatmens/f/dandoc.htm . But a really good Naturopathic doctor would be a good choice.

 

I would also HIGHLY recommend two books for you. One is the Shelia Rogers book "Tics and Tourettes" and also "Enzymes for Autism and other Neurological Conditions by Karen DeFelice." Both those books helped me a lot.

 

Just know there are answers. You may not see a 100% difference with any one action. It may be a series of things that need to be done. It is like trying to change the flow of a river by moving one rock at at time. At first you may not see a big change in the river but once you get enough rocks moved you will see all the effort has made a difference in the way the river is flowing.

 

God Bless,

 

Carolyn

[ilovedogs]

I just wanted to say that it looks like you've gotten good info from Carolyn and Cheri. They've given you good starting points. Since adding 25 mg of B6 to my son's supplements and magnesium I have seen an improvement in his tics. We are working with 2 naturopaths right now, 1 for allergies and desensitization and 1 for working on balancing the neurotransmitters, etc. My 10 year old son started ticcing the day after he turned 9 so I've only been at this for a short period of time but I've learned a lot! Just wanted to come on and encourage you to keep researching and asking questions!

 

Bonnie