Chemar

I know that we had a thread on this a while back, but I have just finished the book and wanted again to recommend it to anyone who hasnt yet read it AWESOME book The Maker's Diet by Jordan Rubin For those that havent yet heard of it, Jordan Rubin is a young man who thought his life was over when at age 19 he was so ill with Crohn's disease that, inspite of numerous conventional and alternative treatments, he just got so sick that the prognosis was death! Then, he believes miraculously, God led him to someone who used the Bible as a basis for determining a healthy diet. As Jordan began to study and research and follow "The Maker's Diet" he began to recover, and is now in glowing health, married and expecting their first child. He has obtained a degree in Naturopathy and has written this book as he firmly belives that God saved his life for him to be able to show others how to regain and maintain good health by following the food plan that God created us to eat. I highly recommend this book!

Jennifer you willbe amazed at what they put coloring in. I have become a label detective...I read every single one now before we consume anything! So much stuff has coloring in (children's vitamins are LOADED with them) as well as artificial flavoring,preservatives and the dreaded High fructose Corn Syrup that they seem to put in just about EVERYTHING now days. I am also amazed at how much MSG is still in stuff, given that so many people react toit.

Hi I am not sure if you saw my reply to you on the Tourette Forum ghound. here is the link http://www.latitudes.org/forums/index.php?...p?showtopic=663 hope that info is helpful to you Cheri

I hear ya Scott.....I am personally a coward when it comes to needles and avoid injections like the plague however after my first accupuncture session I realised it was something very different By the way a BIG welcome to Latitudes It is great to have you as part of our community

Scott accupuncture does not hurt at all!! at least not if you go to a qualified proffessional. I have had it done numerous times as has my son, and we have never had any pain from it, only relief. The needles are thin as thread and in the hands of a pro they are in before you are even aware of it and give no pain entering or while in or when removed perhaps those who have reported pain were in the hands of someone who was not a very good accupuncturist.

Yes, Robin, my son has also had tics where he would shake his head.

Hi Daniel and a big Welcome to Latitudes Sorry to hear of your distress over your child's tics. Firstly, let me encourage you not to feel shame and guilt...this is not your "fault", nor is your child doing anything wrong. Tourette or transient tic disorder is often difficult to distinguish in the beginning and doctors usually prefer to wait a year before giving a clear diagnosis of Tourette. Ususally for it to be Tourette there have to be vocal and motor tics present for a year, and USUALLY, tho not always, there is a family history of Tourette, because TS is primarily a grenetically inherited tic disorder. Transient tics can be caused by many things, and often disappear as quickly as they appeared. One of the primary causes for transient tics is PANDAS... related to the strep viruses. Another is PYROLURIA, which is caused by vitamin/mineral deficiencies and is often accompanied by smelly feet. If their is a history of alcoholism in your child's ancestry then you have another pointer to pyroluria., although it can also exist without that tag. Many have also found that tics reduce when they remove foods that there is an allergic reaction too, as well as artificial "junk" food, especially food coloring and those artificial sweetemners like NutraSweet(aspartame) and Splenda(sucralose) and other artificial ingredients. There are MANY other things I can list that can cause tics, and you will find much info on them if you start reding thru some of the other threads here. Also a great article by Dr Sheila Rogers here on triggers for tics http://latitudes.org/articles/finding_triggers.htm The best docotrs to clearly identify Tourette are either developmental pediatricians or neurologists, but as I say they usually would want to see your child again in a year to confirm. Also, do be cautious as many doctors want to just write a prescription for tics, and some of those medicines can have side effects that can be much worse than the tics! I hope you will stay in touch here as this is a very caring support group where you will learn a lot, and also find people who will care for you and understand what you are feeling. God Bless you

Hi and welcome Bonnie's supplements are probably amongst the safest things a child could take longterm as she has very carefully formulated them with children in mind. If you dont have her website link here it is (she does answer emails sent to her, so you could ask your questions directly) http://www.BonnieGr.com all the best

Jennifer sorry I dont have a resource for finding ped chiros You can use a REPUTABLE regular chiro. the one we use isnt specifically a pediatric one, but she has specialised techniques that she uses for kids and is one of the new school of chiros who use pressure points and gentle therapy to restore balance, rather than the old 'whack it back" technique

Hi Jennifer my son also had this painful tic when he was first diagnosed and it is a fairly common one. a few suggestions FIND A GOOD PEDIATRIC CHIROPRACTOR as these kinds of tics can dislodge vertebrae and this adds to the pain. My son visits a chiro every 6 months and more frequently when his tics were strong. ICE PACKS are very soothing to the painful neck areas. You can buy those ones that are refreezable...they come in a box and get cold when you first open them and shake them. Then you put them in the freezer till next use. They have a soft side which makes it bearable to have the frozen gel against the skin. THEY REALLY HELP SOAKING IN A WARM TUB WITH 2 CUPS OF EPSOM SALTS DISSOLVED IN IT is a wonderfully soothing therapy and relaxes the muscles and eases the pain. My son likes this before bed as it also helps him sleep soundly. HTH

Hi sarahass and welcome to Latitudes I am so glad you found us and now you are not alone Although you are facing a lot of extra challenges as a single mom, we do understand what you are going through, and have all been thru variations of it! Just from what you have said, it really sounds that your son is having his biggest problems related more to the OCD and other mood/behaviour aspects of his neurology, and it sure doesnt sound like his meds are helping much! In my case, my son, now 14, manifested severe TS and OCD and more! shortly after his 10th birthday. We had known he had ADD (no H) since 5yo Anyway, we also went thru a year of rollercoaster stuff with doctors and medications and things just seemed to get worse until eventually we decided to try alternative treatments, which I have always studied and followed for other illnesses. We were just so shattered by the severity and suddeness of my son's condition that we turned to medication as we had been told it was the ONLY route to follow. Since going "natural", the improvent has been truly remarkable...so be encouraged...there is always hope A few pointers which i hope will help you too a strep culture (ie the kind for strep throat) does not accurately detect PANDAs as this can be caused by strep that is of a different strain than the one that causes strp throat. PLEASE do some research on Adderall., especially as your ex has BiPolar. Adderall has been implicated in the development of biPolar symptoms and other stuff. Your son is on a potent mix of drugs and none of them address TS. Prozac is under investigation for problems in kids. I do hear good things on Strattera helping the ADD and most folks who report on usiong it feel it doesnt make TS worse, which some of the ADD meds do. I have so much I want to tell you about but have to leave now, but PLEASE feel free to email me and we can chat more. I do have a lot of info that i think may be helpful to you God Bless you and please also stay in touch here at Latitudes and try to read thru the threads on the Forums and also the VERY valuable articles on the various disorders that you can reach thru the homepage. You will find this to be a truly wonderful group of people who care for each other and share their burdons and triumphs. I hope you will email me Cheri

Hi heathz and welcome to Latitudes it really does sound like you have Tourette Syndrome, or some form of tic disorder. from personal experience with my 14yo son, I can tell you that although there are many things that can help to make the tics more manageable, if you have TS you will tic. cognitive behavioural therapy is a very good treatment...BUT...it really isnt meant for TICS. Tics, especially if they are because of Tourette Syndrome, are just not something that can be "unlearned" or controlled for more than short periods. In fact, trying to suppress them for too long can sometimes make them worse or bring out other problems like mood swings, OCD, frustration, rage, depression, anxiety etc. IMO, better just to tic! Some folks have found that prescription meds reduce their tics, but sadly most of the meds do have some very unpleasant side effects so, at least in this community, we try to stay away from them. Many of us have found a lot of success from the natural treatments that you will find discussed here, especially supplements and the elimination of artificial junk from diet. there is a very good website that is geared toward your age group called Life's A Twitch. http://www.lifesatwitch.com Dr Duncan McKinley, affectionately known as dr Dunc, is a psychologist who also has TS and has lots of really good info and advice on living with it. He is a great guy, and also responds to emails, so you can email him thru the contact link at his website, with your questions and concerns. My son is away at present, but when he gets back I will ask him to email you and you can chat. his tics also started just after his 10th birthday. If you go to another good forum for TS at BrainTalk, you will see posts by a 15yo with user name cool_gadget. He lives in Ireland and is a real sweety who loves to chat with others. he and my son correspond daily by email. here is the link to the BrainTalk Forum http://brain.hastypastry.net/forums/index....?referrerid=312 do stay in touch with us..it is really so important to have a support group of people who understand what you are going thru. Also helps to be able to just vent sometimes all the best as you seek solutions Cheri

Hi fiore as i mentioned in my email, we did use accupuncture and with great success. My son actually considers accupuncture to be the most instantaneous tic relief of all! It has sometimes totally stopped severe tics, and usually reduces all tics. we see a highly proffessional therapist who does reflexology, aromatherapy and biofeedback (NOT neurofeedback) too Usually, while the accupuncture needles are in place, he will do reflexology and other pressure point massage, using aroma oils that are soothing and relaxant. When my son was in severe mode and detoxing from the yeast mercury etc, the biofeedback was very beneficial. If you are going to do accupuncture, choose a licenced proffessional who uses accupuncture as a clinical procedure, rather than one who performs it more as a "mystical" phenomenon. stay in touch!

Hi As with all supplements, I really do advise working with an Integrative (holistic) doctor, naturopath or someone knowledgable to help you decide on the right blends and doses for you. I am NOT a doctor, and so am only sharing what I know from experience. the supplements that are best for OCD are 5HTP , INOSITOL :these increase seratonin which is very deficient in most people with OCD GABA and samE (methionine) are also very helpful as they reduce anxiety etc and so seem to aid in overall OCD stress The doseage is dependent on your body weight. if you are an adult the 5HTP dose is usually around 50-100mg perday while all the others are generally taken at around 500mg per day Some people also find relief from St Johns Wort. It can ONLY be taken with 5HTP in VERY small doses tho as the 2 together at higher dose can spike the seratonin too high. NEITHER 5HTP or St Johns should EVER be taken with a SSRI medication (like prozac, Paxil, Zoloft, Luvox etc)Some people do seem to get "wired" from 5HTP and it seems related to their personal metabolism. These folks seem to benefit more from the St John's Wort. I recently heard of a supplement that is receiving rave reviews which combines low dose hyopericin(the active ingredient in St Johns Wort) with 5HTP It is called AMORYN http://www.amoryn.com/ There is also an online company marketing PURE TRYPTOPHAN which some say is better than 5HTP. I havent personally tried it and their site is hard to navigate because it is in frames but, if you go to the depression link on their main page and thenscroll down to the Product link and then the "T" in the alphabetical link you will get to the Tryptophan (phew!) http://www.healthrecovery.com/MainPage.html you can get more info on the others from these links altho only the Insositol link documents the OCD help, we have personally used the others with much success for OCD and its related symptoms 5HTP http://healthinfo.healthgate.com/GetConten...&chunkiid=21399 St Johns Wort http://healthinfo.healthgate.com/GetConten...&chunkiid=31050 Inositol http://healthinfo.healthgate.com/GetConten...&chunkiid=21766 Methionine http://healthinfo.healthgate.com/GetConten...&chunkiid=21792 samE http://healthinfo.healthgate.com/GetConten...&chunkiid=21460 GABA http://www.wholehealthmd.com/refshelf/subs...5,10027,00.html hope this helps you

Hi Liz just a very important tip..... trying to control tics that are being caused by something neurological is NOT a good idea for any length of time..... it can actually lead to an intensification of the tic or some even more alarming reactions! your son may try to please you, or get his reward, but the tension it will cause him internally and emotionally is really just not worth it. whatever is causing the tic...it is probably NOT something your son can help, and it would honestly be better to just let it be rather than to cause him addtional stress in knowing that it needs to be controlled for you. I do hope you find answers soon so that you can start whatever treatment will be helpful all the best to you Cheri

Hi Claire many people take hemp oil (kept in the fridge near the flaxseed oil at WholeFoods) I have no personal experience with it but am told it is nutritionally safe and beneficial.

Hi Vicki yes, just about everyone who posts here uses only natural remedies, not prescription meds, and with much success. Aromatherapy, as with the lavendar oil is very relaxing, and my son has this when he has his accupuncture/reflexology. Please do keep us posted as to the specific things you are trying. Also, the "hormonal" years do seem to be the years when the tics are highest, at least from the anecdotal evidence.

there are lots of healthy snacks that dont have junk in them..... and you can make your own cookies and salty snacks too. We use pure turbinado sugar, honey or maple syrup for sweetening Cookies that you make yourself are fine, and so is pure dark chocolate in moderation. I make banana bread and carrot cake and other pies and cakes too. Whole Foods does also have pure snacks, both salty and sweet, as do many of the other health stores like Chamberlins etc. Even our local supermarket now has an entire health section that has some really good cereals etc. too Once you get into the habit of label reading and start findiing which companies add less junk, it gets easier! and the rewards are ENORMOUS in terms of reduced tics etc!

Hi Shannon I just wanted to welcome you to Latitudes and to tell you how I feel for you and your son with what he has been thru. I have contacted Ronna, who is very knowledgable re PANDAs and also has a lot of input on the fact that sometimes certain antibiotics are not 100% effective. She may be away at present, but I know she will check in here as soon as she gets my email. I honestly have no answers to what you are observing. I do pray that you will find the answers you need to help your precious child. blessings to you remember....there is ALWAYS hope! Cheri

kimwal I answered this on BrainTalk so wont repeat it all here except to say DONT USE ANYTHING WITH SUCRALOSE IN IT...ALSO CALLED SPLENDA!!! I am amazed that Whole Foods is allowing it with all the controversy surrounding its safety!

Susanna ditto on the chlorine and nuts......both are big tic triggers for my son and he now avoids swimming pools and all nuts. Chlorine also gave him hives, so a definite allergy there.

Hi Sherry yes, we determined doseage under Integrative physician guidance, using Bonnie's original research plan as a foundation My son had blood, hair and radiogenics testing done to determine deficiencies. Bonnie's orignal plan is here http://www.geocities.com/Area51/5207/ts_ma...bonnie_sup.html and her new Bontech Supplements ingredients and doseage guidelines are on her website at http://www.BonnieGr.com A multi is good (as long as it doesnt have artificial color and flavor etc in) but the benefits of extra supps that target TS specific deficiencies are really worthwhile. And there are many folks who can attest to the fact that the earlier you start a supp program, the better.

thanks for the clarification Claire! I got my Omega 3s & 6s mixed up the other day and so I wanted to be real sure I understood before I pointed folks to this as a pyroluria test info thread!

Hi I need clarification I see Claire has referred to "pyrollia" I have not heard of this before. I know of "pyroluria" are these the same thing?? and Ellen the tests you are referring to.... is this for what I know as PYROLURIA?? or something else. thanks for the clarification I just want to be sure I have it correct before I refer folks here.

efgh MSG is chemically-altered glutamate aka glutamic acid. Glutamine is is the amino acid form most frequently seen in supplements. Glutamine and glutamate are separate amino acids, but share a common metabolic pathway, and glutamine converts freely to glutamate in the body Some amino acids, whether in their naturally occurring state or chemically altered, are NOT a good thing for certain neurological conditions...it depends on their action. Bonnie has posted in detail before on the amino acids that are to be avoided for tics, and I will try to find that info.for you. In general it is wise to stay away from amino acids when there is a neurological disorder UNLESS they are specifically recommended by a physician or health care professional. This is because most amino acids have a profound effect on the nervous system. There are, as you know, some amono acids that are VERY beneficial to tics..eg TAURINE this is what iHerb warns about glutamine/glutamate