Chemar

Dear Barb I too am so thankful that your prayers have been answered and that you have begun to consider that their may be alternatives to treating Kalebs tics. I would like to encourage you from a personal level, as my son had VERY severe TS/OCD/ADD and used to be on meds, but now, four years after going off meds and on to natural treatments, his tics are very mild and the OCD is barely noticeable and he is on the honor role at school ! You will find so much excellent information here at Latitudes, and especially from the experiences of the posters on this forum. Claire has compiled a number of valuable threads on some of the causes and treatments common to many here I have also put together a thread on what we have done to help him, which I hope will give you some pointers. I have bumped it up for you and here is the direct link http://www.latitudes.org/forums/index.php?...p?showtopic=687 From one praying mom to another.......see that light at the end of the tunnel?!

bumping up for Kaleb's mom and others interested

Hi Laura and welcome in addition to the good pointers that Claire has already posted, I would also suggest that you read the article on tic triggers by Dr Rogers http://latitudes.org/articles/finding_triggers.htm You are truly already on a very good path, so congratulations! Especially as your son is still young, you can be very hopeful of seeing tremendous improvements. Do keep us posted as your experiences can shed lots of light for others.

great news Ronna My son really loves his reflexology sessions too. We bought a book on it as well as a wooden roller massage thingy so that he can do some for himself as well. Although he hasnt had formal cranio-sachral, our therapist sometimes just does a general massage for him to work out the crinks caused by tics, and my son LOVES the head massage best

Just a quick comment here that may be helpful although my son's reaction to screen flicker is not intense, he does react significantly to fluorescent light and also to the TV on in a darkened room (movie theatres too) He seems ok with his LCD monitor Anyway, we use those "daylight" lamps, and as long as it is on in the room, he doesnt seem to rect as much to the TV flicker. I sympathise greatly with you all who are facing an unhappy kid re "no screens" My son is 15, and simply states that life without his games is NO LIFE Thankfully tho he made the decision to stick with games on his computer with the LCD screen rather than the consoles on the TV , and he also avoids "explosive" games as he knows they set him off Trips to the movie theater are also not a very frequent occurrance as that really sets him off big time......we think it is the combination of the intense light changes in a darkened theatre, PLUS the sound intensity, and who knows what chemicals etc in the theatre.

Hi and welcome Rachael it is always a good idea to try to see another doctor for a second opinion as even the most well meaning and specialised doctors can sometimes misdiagnose neurological problems. There are some good leads to doctors who run different kinds of tests etc here http://www.latitudes.org/forums/index.php?...p?showtopic=565 Also, have you checked out the autism/ aspergers forums? Maybe some clues there as to what your dear son is experiencing. stay in touch ...... this is a great website!

Thanks jc I am so very delighted to hear of your son's improvement since coming off Haldol After my son's experience on the meds, I went thru the most awful time of guilt and self-recrimination for having allowed that to happen to him. Then, one day, while in thankful prayer for his recovery and for finding the "natural" path to help him, I felt that I was meant to share our experiences openly so as to be able to use them to help others. I prayed then that God would bless that outreach. So to read your words of encouragement truly is an answer to prayer for me

Hi everyone Most of the regulars here know that I am VERY wary of prescription drugs for neurological issues . This attitude comes from nearly LOSING my son because of the serious side effects that he suffered from these drugs. I was NEVER warned by his physicians about the dangers, only told he needed the drugs to "live a full life" and when my initial response was hesitant (we have always been a naturopathical family) I was treated like a bad parent and even intimidated by being told I was not acting in my child's best interest! Well, I should have trusted my instinct and done my research more thoroughly before ever allowing those drugs to do such damage to my child! Thankfully, when he nearly died after being put on yet another drug, I had the courage to say enough! no more!! and now, four years on, my son is living a very full life, minimally impacted by his TS/ADD/OCD etc and healthier than he has ever been. A discussion on another thread got me thinking that we really have a need here to have an informative thread about "brain drugs" aka psychiatric medications. I will be very much coming from the anti med position, based on our experience and that of numerous people that I have had contact with, either personally or here in cyberspace. But if anyone wants to add any positive comments about how any meds have helped them, PLEASE DO....it is always good to have a balanced view in order to be fully informed. I also invite all who have any other info on meds, positive or negative, to join this discussion. So here is my first contribution: a superb website by Dr Peter Breggin, a long time advocate for restrictions in the use of brain drugs, especially in young people http://www.breggin.com and the list of books by Dr Breggin (Your Drug May Be Your Problem is excellent in that it gives detailed info on all the psychiatric drugs and their potential side effects, as well as clear info on withdrawing from them) http://www.breggin.com/prbbooks.html I would also like to link here to a long and very detailed thread at BrainTalk compiled by Mrs Doubtfyre, who is not only a medical professional, but also one of the most knowledgable and helpful people re alternative treatments, as well as the potential hazards of medications. Those who visit BrainTalk know that Mrs D as she is affectionately known, is a mainstay of many of the Forum's there http://brain.hastypastry.net/forums/showth...read.php?t=2441 The drugs that my son tried and had severe side effects from were Haldol, Luvox, Naltrexone and Zyprexa. Here is also a very good link to the Health Encyclopedia at iHerb, where you can look up almost all vitamins, minerals, herbs and other supplements, and also find information on their known interactions with some of the prescription meds http://www.iherb.com/health.html I hope that this thread will gow into a balanced and informative resource for all who want to know more about prescription meds used in neurology.

Tardive Dyskinesia IS one of the serious side effects of neuroleptic and antipsychotic drugs. Thank God we took my son off the meds before it became irreversible in him!! here is an excellent website on the harmful effects of these drugs http://www.breggin.com/ Dr Breggin has also written a book (one of many by him) called "Your Drug May Be Your Problem" which was instrumental in helping me to make the decision to wean my son off the drugs.......and so LITERALLY saved his life!!!! here is Breggin's booklist, and you can click thru to this book info from there http://www.breggin.com/prbbooks.html The medical establishment has dissed Dr Breggin for years calling him a quack and other unsavoury names, especially for his stand against the use of brain drugs in children and teenagers......well, now, after all these years and damaged young brains, the FDA has FINALLY put the black box warning on SSRI drugs.....something Dr Breggin begged for for so long!

Hi Lyn Have you seen improvements from the Risperdal (risperidone)? I ask because it is a fairly strong antipsychotic, and I have heard of many unpleasant side effects from it. It's biochemical finctions are as a Tranquilizer, anti-psychotic, benzisoxazole derivative; Dopamine D2/ Serotonin 5HT2 antagonist. I know this is not related to your question re the supplements and his cough, but I have a natural instinct for concern when young kids are on such strong anti-psychotic drugs. As to the cough etc......certain kinds of "inhalers" can contain substances that interact with meds so do ask your doctor about interactions Generally most supplements are very beneficial when one is ill, but you do need to check to be sure that none of the ones that your son is on are interactive with either the Risperdal or with the meds being given for his cough/cold It really would be so helpful for you to try to get your child to an Integrative doctor who will run tests and use more natural treatments to help him The thread at the top of this Forum on "Finding Medical help" can guide you, and we are always here for you.

Hi Heather My son eats those foods regularly with absolutely no increase in his tics! I guess it is once again just the different metabolism that individuals have, or maybe that Tourette tics arent as impacted by the salicylates as other tics?

hi there efgh yes, that Mercola info had me thinking too I dont use Feingold and so cant comment specifically on that as I know that many have found tremendous benefit in following the guidelines there. I know that a vast majority of the natural foods that Feingold restricts are what I consider to be very healthful and beneficial and certainly dont seem to be in any way detrimental to any of my family...... but then we dont exhibit food allergies so maybe that is the difference? however, I certainly and wholeheartedly agree with the Feingold restrictions on artificial stuff

Hi jc congrats on having him off the Haldol!! as to the B vits, this really is something to check with a qualified person, as daily requirements really do depend on a number of factors, with age and weight being one. Here is the link to Bonnie Grimaldi's ORIGINAL plan which outlines the amounts of B's that she recommended. You can also click thru from there to her current website and then into Product Info to see how much of the Bs she has in her TSPlus formula http://www.geocities.com/Area51/5207/ts_ma...bonnie_sup.html We found when my son was on a high B complex that he had digestive side effects(constipation) and so we stopped B.CO and instead give individual B's where needed over and above that in his multivit You must be soooooooo relieved to have your son "back" from the twilight zone that Haldol produces! I remember our joy when we saw that dulled look disappear from my son's eyes.

Hi ntbowen and glad you made it over here. I responded to your introductory post yesterday at BrainTalk, and I am so glad you decided to follow the link I left for you to get here to Latitudes. You will find a lot of very useful info here, and caring people willing to share.

Breastfeeding is best, provided the mom is not ingesting anything bad for the baby I breastfed both my children for over two years. Never gave formula. Introduced other foods along the way.

Hi strange that Epsom salts is expensive over there? here we can buy it at the supermarket for just a few dollars for a very large carton or tub. I honestly dont know how to advise you as even if you buy it from a US website cheaply, the shipping may be costly. Is it also costly in the UK?

Just a word of caution here...... I dont know what is in the enzymes you are using, but IF they contain animal tissue BE VERY WARY!

Caz we did accupuncture/reflexology/biofeedback as part of my son's detox. He did take chlorella and other homeopathic drops at the time too. The hair analysis, radiogenics, and blood tests that we ran were surprisingly in sync with each other

Hi Clare thanks for the reminder on this. I actually did write to a number of US representatives in connection with this issue some time ago, and received some replies that led me to believe that the EU decisions could NOT impact the US regulations. However, with this coming up next year, it is time to put on the activist caps and get back to protecting our rights. I am going to post Dr Wright's article over at Braintalk too, as well as to email it to a number of groups and individuals. I would truly be amazed if countries like Germany and other "mainstays" of herbal and other alternative rememdies did not challenge this BIG TIME! for those that havent read Dr Wright's article here it is, along with it's advice at the bottom as to how to take action http://www.alternative-learning.org/altlea...ements-ban.html

Hi Lulu yes, dustmite can negatively impact tics, either via the allergic response in sensitive individuals or via an irritant response which most people do have to them. For those that have dustmite allergy, the reaction is especially noticeable

YES!!!! what an encouraging post! I am so very pleased for you and your son MC

It is an interesting discussion and something I feel fairly strongly about (in case you hadnt noticed ) many neurological conditions can occur in association with one another, as co morbid conditions. That is a fully accepted fact and recognised by both the conventional and alternative medical communities but it is a whole different thing when they start to be classified as part of the same "spectrum" based on a set of criteria that really are not related to the crux of the disorders, and for which there is no or conflicting evidence. That is why there is enormous controversy when some try to classify Tourette Syndrome, or ADHD, or OCD or any other neurological condition other than the classic PDD (pervasive developmental disorder) conditions as part of the "Autism Spectrum Disorder" or ASD........the fundamentals are just far too diverse to place such a narrow definition ! Yes, there are areas that overlap, as occurs in many neurological conditions. But, IMHO, Tourette Syndrome IS a spectrum neurological disorder NOT a subtype in the Autism Spectrum Disorder. By the way, earlier in this discussion, I linked to an article on Leslie Packer's EXCELLENT website "Tourette Syndrome Plus" I really would highly recommend this website to everyone http://www.tourettesyndrome.net/

Hi Claire yes, there is an overlap in those issues, but I think these things impact ALL forms of health. eg I have a friend who was diagnosed with chronic fibromyalgia.....turned out she actually had chronic yeast infection and once that was cleared the fibromyalgia disappeared. In my case, I had mysterious symptoms that were finally attributed to my mercury fillings. And food sensitivities mask as a number of illnesses from acid reflux to irritable bowel etc......people popping pills when they should actually just be eliminating the offensive food allergen etc etc So, whereas I absolutely agree with the protocol of running all these tests and attempting to detox and immunoboost etc etc, still, the mechanisms involved and the major differences in COGNITIVE and COMMUNICATIVE functioning in ASD vs the other neurological disorders is just, IMHO, too far apart to put them on the same spectrum, rather than as disorders that can be co-morbid. The complex tics such as head banging, whirling etc really do leave the individual very exhausted and debilitated. From what I have gathered, what you refer to as "stimmimg" is something done in ASD individuals to create neurostimulation because they function in a hyposensitive way. Well, from my experience with my husband and son, and the other TS and the ADHD people I know, they are far more HYPERsensitive, and certainly dont need to stimulate their senses or their neuro impulses. I realise that where TS is comorbid with autism or aspergers, then a whole different set of parameters are at work and truly do not have any knowledge or experience in that area.

Here is a detailed article from NIMH on PDDs and ASD http://www.nimh.nih.gov/publicat/autism.cfm Tourette Syndrome and ADHD and OCD may occur in people with Autism Spectrum disorders, but they in themselves are NOT classified as such.

Here is a very informative article on one of my very favourite Tourette Syndrome sites I honestly do not agree that Tourette Syndrome is an Autistic Spectrum Disorder, and this article explains why http://www.tourettesyndrome.net/aspergers_...comorbidity.htm Yes, there can be overlaps in many neurological conditions, and yes, misdiagnosis frequently occurs. But IMHO Tourette Syndrome is not a PDD (Pervasive Developmental Disorder) as autism and aspergers are. ps I still dont know what the term "stimming" means