Hi
as Mrs D has recommended that we should start threads related to specific ailments, I am going to repost the info on The Natural Treatments that have helped my son. I do have my thread at Latitudes linked in our Useful Websites thread, but as it dates from 2004, I figured an updated post was needed....so here goes.....



I have put together what I hope is a simple summary of the Natural Treatment protocol that has helped my son go from severe and debilitating Tourette Syndrome/OCD to symptoms that are now so mild that most people are unaware that he has TS The improvement was very dramatic, and we saw the effects within just a few days of starting out on this regimin, although for many people it can take a few weeks for the full benefits of supplements to be felt and seen. He was first dx with TS in 2000 aged 10, although we now realise that he exhibited tics from a very young age. We believe the TS is genetic, as my husband came to understand that what were believed to be childhood "habits" that he himself was scolded for, were in fact tics and OCD, and that his dad, who had always been considered eccentric, was in fact also TS/OCD

My son was on prescription meds for a year when he was first diagnosed, but he reacted badly to all of them, and had side effects that were so severe and alarming that we finally had to carefully wean him off the meds (with the help of a very special psychiatrist to whom I will always be so grateful for being willing to help me switch to an alternative protocol !)
We then started him on this program which I gradually put together after much research on the Internet and continuous consultation with numerous health care professionals

I must emphasize that, although I have a background in Medical Research, with a postgrad degree in Physiology I am NOT a medical doctor. This is the program that worked specifically for my son, and so I cant claim that it will work for everyone and I also must stress that we were at all times guided by a team of knowledgable doctors. I urge everyone to work with a qualified physician!

I would additionally like to clarify that I am NOT "anti-prescription medication"
I recognise that these meds have a vital and freqently life saving function, and also that many people with TS find great benefit from them.
My philosophy is more that medications have their place and for our family, that is more a last resort as we now tend to first try a more natural approach to all illness. I also feel that this attitude makes us less resistant to the drugs when they are really needed (eg antibiotics)

I do need to mention that my son has recently been diagnosed with Crohn's Disease (although he has likely had it for quite some time but just been misdiagnosed) I have therefore modified his diet and supplements to incorporate more anti-inflammatories and less immune boosters. I will post a separate thread on just which supplements and dietary changes are helping with the Crohn's.


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The treatment regimin involves mainly supplements (vitamins, minerals, herbs and certain amino acids)

The effectiveness of this treatment was enhanced by detoxification from heavy metals (in his case, mercury) and controlling yeast overgrowth(candida) in his digestive tract.

We also found that artificial foods were big tic triggers for him (coloring, sweeteners like Nutrasweet ie aspartame and Splenda ie sucralose, MSG, preservatives and high fructose corn syrup)

We ran allergy tests and did a process of food elimination, but he doesnt have any natural food allergies per se, only mild p-nut sensitivity so we avoid those.
For some folks tho, things like dairy, wheat(gluten) etc can be allergens and so intensify tics, OCD etc

My son was also able to identify other tic triggers that he has such as chlorine (he avoids pools now) and dustmite, mold etc and also most strong smells like in perfumes, and some household cleaners, air fresheners etc (some of this is probably related to his hypersensitivity to sensory things..ie taste, smell, touch, sight and sounds) Occupational therapy made a big improvement in his sensory issues from the Sensory Integration Dysfunction that so many folks with TS etc seem to have....tho he still removes all labels from inside clothing and wears his sox inside out as the seams in clothes drive him nuts

There is an excellent article at Latitudes on Tic Triggers




Acupuncture has greatly benefitted him too, as has reflexology and biofeedback (we do NOT use neurofeedback)

In addition he sees a NUCCA trained chiropractor who uses gentle pressure methods to help reallign him, as ticcing frequently causes skeletal misalignment with resultant neuromuscular problems which cause pain and can even trigger more tics too! ( http://www.nucca.org )

He also had very effectiveCognitive Behavioural Therapy for the OCD,



In addition we tested for PANDAs (negative) and Pyroluria (not an issue) as these can also be conditions that exsacerbate tics, OCD etc

In addition to the psychiatrist that I mentioned before, we saw an INTEGRATIVE medical doctor (trained conventionally, but specialised in natural medicine) who also referred us to the other healthcare specialists and they all had input on my son's testing and treatment.

The OCD, depression, anxiety and other mood issues that frequently accompany Tourette Syndrome were always the most troubling for him, and the improvement that the supplements like primarily 5HTP, Inositol and Vitamin B6 have made there are remarkable! (It is not a good idea to mix some of these with serotonin elevating (SSRI) meds tho, so do note that!)

I based a lot of his supplements on Bonnie Grimaldi's research. She now has her own products, BonTech on the market which many people use with great success for tics ( www.BonnieGr.com ) but we maintained the combinations that I put together initially for my son, under guidance from the healthcare professionals, as it WORKED and so I was reluctant to change anything. However, I know that Bonnie's range of supplements have been very effective for many people

Here is our basic program
(The doseage of the supps depends on age and body weight so I have not included it here as it will vary with these parameters for each individual)

*1 multivitamin/mineral (the multi has all the good antioxidants,and other RDA supplements and is high in the B group vits, and I add an extra B1 and B12
( IMPORTANT NO COLOR, FLAVOR OR FILLER IN THE MULTI!! )

*1 combo essential fatty acid supp containing flaxseed, borage and evening primrose oil
( My son is sensitive to fishoil, as some people with TS are, but if you tolerate it, it is good to also use that, he does eat a lot of fresh fish tho)

*1 Lecithin

*1 Royal Jelly

*2 ginko biloba(for ADD)

*1 Inositol/vitamin B6 combo (for OCD & tics)

*1 St Johns Wort (for OCD)

in the evening he gets

*1 5HTP/vitamin B6 (for OCD)

*1 Methionine or sam-E(for OCD)

*1 calcium/magnesium/zinc combo( main tic reducer)

*1 taurine (main tic reducer)

*1 GrapeSeed PLUS extract Boosts immune system and seems to also promote restful sleep. The blend I use also contains Bilberry for his vision as well as other essential antioxidants)
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When he is run down he also gets co-enzyme Q, and if we notice anxiety up I add GABA)

He used to take L-carnitine, which many folks find very beneficial for tic reduction and relaxation, but lately he seems to get edgy from it so we discontinued it.

Certain of my son's tics were clearly interlinked with his OCD, and this was especially so with injurious ones. The psychiatrist who was working with him at the time educated us about this interaction between OCD and Tourettes, and also about ENDORPHINS, the "feel good" chemicals naturally secreted by our brains when we experience pain. Sometimes repetitive injurious "tics" can be stimulating endorphins and so the patient keeps doing them because of this natural high. The amino acid phenylalanine, in its D form, promotes endorphin release and my son was on this for a while. It totally stopped these self injurious "tics" It isnt easy to find D-phenylalanine, but the DL-phenylalanine is more widely available. Please note that where just the L form helps with depression, it is the D form that is needed for the endorphin release.
A very good way to also increase endorphins is excercise.
I should also point out that some people may tic more from phenylalanine. This was not so for my son, but it needs to be noted

As a bonus, we were delighted when my son's ADD also became negligible after we started the suppplement treatment!

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I stress again,ESPECIALLY if you are ON MEDS, it is a good idea to talk to a physician before adding or combining any of these supplements as interactions can occur which can be serious.

Here is an excellent site for reading up on the various supps, drug interactions etc
http://www.iherb.com

information overload????
I will be happy to try to answer any questions, and I hope this info may be helpful for someone out there who needs it.

Hi. My name is Taffi and I have twins who are now 19 who were diagnosed with Tourette's/ADD/OCD at age 6. My daughter now deals with scoliosis and unnamed digestive and immune systems difficulties, and my son has recently been diagnosed with Crohn's. I have been trying to get them on Social Security so they can get Voc Rehab (as you can imagine holding down a job for either of them is a nightmare). I was, in a way, accused of trying to get some sort of "free ride" for my kids in looking for Social Security by a Social Security attorney we saw. They look perfectly "normal," so he said he didn't see why they couldn't work. I wish I could find an attorney who actually cares about people who suffer so as they do and could offer some understanding and real knowledge in dealing with them in their plight.

I did a search for Tourette's and Crohn's and found this webpost. I was very interested in speaking to the other mother about her experiences with her son with both TS and Crohn's. I read the book "breaking the viscious cycle" just last night. I ordered it with some probiotics for both the kids to try. I felt overwhelmed, especially as my son suffers with tactile defensiveness and has a very limited diet already. Trying to implement this diet would probably mean he'd starve to death, but we so want/need to address the Crohn's so he can start living again.

At least I can work to change some of the things in his diet (i.e. have real cheddar instead of American, cut down on table sugar with the use of honey, etc.) I was wondering if anyone else has had similar experience.

Thanks for letting me blab.

hi taffi. welcome to neurotalk.

it does sound like you have your hands full. you came to the right place. chemar and others have so much information and support.

lots of support here.

Hi Taffi and welcome to NeuroTalk

I am not sure if you are aware that Tourette Syndrome has recently been classified as "other health impaired" so that it is recognised as a disability.

I would strongly recommend that you get hold of the TSA and see if they can refer you to an advocate who can help you with this
http://www.tsa-usa.org

as a mom of a child with TS/OCD/ADD and Crohn's I most certainly know how hard it is to maintain a "normal" schedule
The attorney who accused you of trying to get a "free ride" for them obviously knows zilch of the suffering that both severe TS and Crihn's can cause
BTW, I have also done a thread documenting the success we have had in keeping my son's Crohn's under control with supplements
http://neurotalk.psychcentral.com/showthread.php?t=9831

we recently had some stressful events occur and he had a major flare up of all his symptoms, but once again, tweaking his supplements has been so beneficial and things have clamed agin in his sytem

re TS, there is an excellent book by Sheila Roger's called Tics and Tourettes: Breakthough Discoveries in Natural Treatments
http://www.latitudes.org/book.html

I would be happy to answer any questions you may have Taffi.....and I sure hope you find someone to advocate in getting your kids the help they need

Cheri

Hi Taffi~

There are a couple of people who post on the Gluten Sensitivity/Celiac Disease forum who are very familiar with this book and the Specific Carbohydrate Diet (KimS in particular). Just thought I'd let you know that in case you were interested in discussing the book with someone.

I know I considered doing a summer of the SCD but it sounded a little overwhelming to me, and we already do gluten/casien free~ yet those I know who have done it have found it helpful~

Good luck~

Cara

Hi Taffi,

I just wanted to say that you don't have to be getting Social Security to get services from Voc Rehab. I have TS, and I don't have Social Security. I receive college tuition assistance from Voc Rehab. Actually I just started receiving it this quarter even though I've been back in school for over a year. I received tuition assistance from Voc Rehab in 2003-2004, but I took the wrong career path and decided to go back to school. It took a lot of staying on top of things with voc rehab and calling and calling until they got me taken care of. I think voc rehab can be a pain to work with, but that extra tuition assistance helps a bunch.

Did the "breaking the viscious cycle" book have any recipes that looked good?

Carolyn

Thank you for the responses... I was feeling very down after reading the book, and simply cried and cried on my husband's shoulder the other night. As always, I put my chin up, and started trying to look at things differently.

Another thing that happened to my daughter along with all her ailments, was she was the victim of sexual abuse at age 9. It was all sub-conscious damage (I believe she was given a rohipnol (sp?) type drug,) so she acted out, became suicidal, etc., without knowing why or what had happened to her. She was hitting her teacher, hiding in the bathrooms, and screaming in the halls. It was simply awful. We didn't find out what had happened to her until 6 months later when the dentist was busted with pictures. She is not social at all, and when she tries to be, she is socially awkward. She wants to have a boyfriend, but cannot attract boys that are intellegent yet sensitive enough to "get" her.

We had to move after these experiences, and went to a school district where they were both given appropriate IEPs (at their former school, they would only give them services under SED - Severe Emotional Disturbance). They were finally coded as Other Health Impairment and received appropriate accommodations. I fully expected this to be the same with Social Security, but was not the case, their determinations still classify under Mental Health for TS/OCD/ADHD. We had originally gone to Voc Rehab to look for assistance, but they said my husband and I make too much money for them to offer anything. They said the only way was to get SSI based on the fact that they're over 18, and go from there.

They saw a mental health provider who specialized in TS/OCD and other sequelae for almost 12 years, and were very well taken care of. However, this Ph.D. had to stop her practice for personal reasons and they've been pretty much left in the lurch since. I'm now in the process of trying to find someone on our insurance who can give them appropriate updates for SSI. But, it has been my experience that a regular PhD tends to say things like "you can choose not to do that behavior," and "I wouldn't have said that if I were you," which only add to the problems and anxieties associated.

Luckily, so far they are able to do college, both with classes and online courses, and make good grades. They are still eligible for our insurance as such. But we have used every cent we've had to pay for medical/therapy/prescriptions/relocation/etc. (Not to mention car insurance after my daughter had 5 accidents and my son had 6.)

I will also try to contact the TSA, but my experience has been (as of late) of not being able to reach anyone there, and not having my phone calls returned. I don't know what the problem is there.

Boy you know, sometimes I feel like Debbie Downer from SNL! But, I'm very glad to hear from other people in similar situations... I will be on again, I'm sure, as things move along. I just have to find the time...Thank you!

Oh, and Chemar, how old is your son...

Hi Taffi

((((hugs)))) to you and your daughter! what a very sad experience for her.

my son is 17yo now

This is a great thread. Thanks for putting the time and effort to compose it all.
Complex it is, Chemar!

It reiterates the fact that sometimes WE have to take the initiative to
find solutions for ourselves.