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Everything posted by Chemar
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Hi the fact that your youngest had strep/scarlet fever is a concern I would suggest you address with a PANDAS/PANS literate doctor... Our PANS forum has a lot of info on testing etc and the Cunningham test is now available in many states. Other than some infection connection, or a genetic manifestation of TS, there is also the possibility that something in your home is a tic trigger. We have had parents here whose kids had tics due to hidden mold in the home, or arsenic exuding from woodwork, formaldehyde from carpeting, lead in the old paint etc etc. Be sure to go through the "Helpful Threads" pinned to the top of this TS/tics board, as well as the one on the PANS forum
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The Tourette Syndrome Association (tsa-usa.org) has research showing it's effectiveness in reducing tics. However it remains illegal in many states, and I am not sure of the rules on prescribing it for minors even in those states where it is legal, so you do need to be very careful. There are also numerous research studies that indicate that in susceptible individuals (ie not in everyone!) it can lead to schizophrenic conditions and psychosis...so notwithstanding the health benefits that have been documented, this is something that should be discussed with a reputable physician, especially regarding a young child!
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No...glutathione has nothing to do with ALA (alpha liopoic acid) and many seem to have used glutathione here successfully I have no personal experience with it. I mentioned the ALA as I am shocked to see how many people talk of using it to remove mercury and assume they were not givgen the warnings our Integrative doc gave us about it! Chlorella comes as a supplement and available at most health stores. If you use it, start at a very low dose as it can cause a bit of nausea initially. Can't hurt to ask your doctor about it first though!
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Hi I am a bit pushed for time right now, but do a search on heavy metal toxicity here and you will find a lot of info on how it can be a major cause of tics and other neuro problems. My son was high mercury, (believed leeched from my then many existent mercury fillings while pregnant) and we both used chlorella chelation. Be wary of ALA (alpha lipoic acid) as although it is an excellent mercury binder, it crosses the BBB and so can actually carry bound mercury into the brain! We were told it should only be used once the initial levels were mopped up in other ways. Not sure what your doctor's "usual treatment" for heavy metals is that is unavailable?? There are likely many new treatments available now. We also had acupunture and biofeedback treatment to assist in the detox process along with excellent holistic remedies called AntiTox (I forget the manufacturer now...this was almost 14 years ago!)
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I have to post a very urgent caution here!! Dempstaa, IF you do in fact have Tourette Syndrome then do NOT have a "steroid burst"!! It can stimulate dopamine which in people with TS is a major tic trigger, and sometimes the results can be very long lasting with tics remaining highly elevated! I know that people who have PANDAS can benefit from steroids but there are a number of posts on our PANS/LYME forum warning that not all infections benefit from it, and in some cases it can also be detrimental. So please be very careful in just following what some may recommend when you are still in this stage of uncertainty as to what may be the root cause of your tics. I realize the advice is well intended but people who do not know about TS should be careful in making such broad statements that can actually be detrimental to someone who has Tourette Syndrome! I absolutely agree that finding a doctor who is willing to investigate fully and *then* recommend appropriate treatment is the best and also that neuroleptics are often not worth it as they have awful side effects. CBT however is a highly respected form of therapy that some are using for tics, though it is more often used for OCD etc
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I have always heard 10 years for tetanus? Can you call your doctor's office and see what they suggest? My son had to have one when he entered middle school and as much as I am concerned about vaccines, it did not seem to have any negative impact on his tics.
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Hi whenever there are vocal and motor tics for more than a year...it may be Tourette Syndrome, but most often TS is genetically inherited .............so do you have any family members who have tics or are diagnosed with TS? Often, people who have tics are misdiagnosed with TS when in fact their tics are caused by something else....as mentioned above, dietary reactions can be a major tic trigger, as can environmental allergies, toxins (like pesticides, mould etc) and many more. There are also people misdiagnosed with TS when they in fact have infection triggered tics, which is known as PANS or in the case of strep induced symptoms, PANDAS. We have a separate forum for that here. I would suggest you read our helpful threads pinned to the top of this forum, which I also have linked in my posting signature below.
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I don't think adding calcium supps to "test" if opposite to magnesium effect is a very good idea, especially as there is no evidence suggesting calcium by itself has any impact on tics?.......plus most people already get a lot of calcium from their diet. Just randomly adding calcium if it is not needed could actually mess with the balance imho
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Yes, magnesium oxide is very poorly absorbed and most of the magnesium just passes out. It has been suggested that it may be helpful to give magnesium with calcium, in a 2:1 ratio ie 2 parts calcium for every one part magnesium...if there is not sufficient dietary source of calcium The dose of mag recommended for a child is around 300 mg a day BUT if your child appears to get worse on magnesium supplements then why keep giving them? It may be that he is ticcing due to something other than TS and/or may not be deficient in magnesium. You may want to ask for a blood test to get his levels and go from there.
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Hi Bonnie From our personal experience, I would recommend CBT as a starter . It is important to let him feel comfortable with the CBT practitioner....some can be a bit over bearing ...my son responded best to a gentle therapist who worked with him rather than tried to instruct him. Meds for OCD just have such potentially ick side effects, but if it is believed he needs more serotonin (often deficient in OCD incl Tourettic OCD) then there are a number of supplements and also foods that can be very helpful.
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Tourettic OCD is considered a specific type of OCD only occurring with TS, where tics can "morph" into OCD symptoms and OCD symptoms can become tics.... we were first made aware of this "subtype" of OCD by a pediatric psychiatrist when my son was much younger, and we were frequently puzzled by trying to differentiate what was a tic and what was OCD. I have subsequently seen quite a bit of research and other documentation on it. If you Google Tourettic OCD you will get a lot of info on it.
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If he has TS, this could be what is known as Tourettic OCD...where tics and OCD symptoms "morph" Trichotillomania is very characteristic of OCD, and OCD very commonly is a co-morbid disorder with TS Tics do not have to be exactly repetitive...they can be somewhat random...and especially when they are falling into the Tourettic OCD category
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Hi TinyTreasures where I absolutely agree that it is always a good, if not essential, idea to check into PANS/PANDAS when a child exhibits tics, OCD etc symptoms, I do just want to mention that PANS/PANDAS does not "cause" TS, although yes, people with TS may also have PANS/PANDAS and vv and yes some people are misdiagnosed with TS or tic disorders when they in fact have infection induced tics. But Tourette Syndrome (with or without co-morbid OCD etc) is a genetic disorder that can manifest with absolutely no related infection, and some tic disorders are also triggered by things that have no relation to infection either. Similarly with OCD.
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1. Bach Rescue Remedy is a great standy for calming when tics increase during nervous/excited phases (provided no allergies to the flower extracts ingredients) Also lemon balm, chamomille tea and good old deep breathing techniques. There are also good aromatherapy opils for calmin...we like lavendar and jasmine 2. I don't believe anyone can ever say they tried "all" the alternatives as the combinations and treatments are so complex, and individual needs always factor in so that what works for one may not for others! If a child has genetic TS, then there may never be a total remission of tics, nomatter how many good things one does. But from documented experiences by so many people, trying to clean the diet, heal the gut, clean up environment and eliminate as many triggers as possible, as well as investigating an possible additional infection connection really can make things a whole lot better! 3. Fish oil has been noted so many times as a potential tic trigger that flaxseed or other omega 3 sources may be a better option, while eating salmon and other omega 3 rich foods. Recent research does again point to taking in a balance of the Omega 3, 6 & 9s rather than this emphasis that some have had on high potency UNNATURAL omega 3 only. If your child does not need magnesium in supplement form then why give it? remember it is primarily kids with TS who benefit from it and your child may not have TS from what I understand? Supplementing correctly is a very individual need based process...again, what works for some may not for others. 4. NUCCA chiropracty helped my son's tics greatly (find a practitioner at http://www.nucca.org) and accupuncture has always been a tremendous benefit to him (not just for the tics, but also the OCD, anxiety, Crohn's etc) He started it aged 10 and with a qualified CLINICAL accupuncture therapist (be careful to choose wisely, usually those recommended by your physician would be a better choice ) The experienced practice of correct needle placement (they are hair thin) means no pain and much gain.
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Thorne makes iron and copper free varieties of their multi If he tics more when on it then he may well be sensitive to one or more of the ingredients, especially if he does have pyroluria
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My personal opinion would be to keep working on what your integrative doc suggests. The more you can heal those other areas, the better for your child, whether or not he has TS etc. And even if he has TS, there is no need to go knocking on any doctor's door for meds, as many with TS here can attest. So best just ignore their gloomy predictions and move forward with what seems to be helping and take it a day at a time.
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There (imho) is a difference between the characteristic waxing and waning seen in Tourette Syndrome tics....and the waning of tics once a trigger is removed (or the waxing when one is added) And unless you are absolutely certain why your child tics, it really is impossible to predict what may happen next. So all you can really do at this time is keep on with that which appears to be helping, give his system time before adding anything new! and see how things go........ Glad you are seeing improvement
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When my son had vocal tics at school, the 504 plan was a great help as it was written in that he was allowed to either chew gum or suck on a (healthy!) candy during class. Many people find that very helpful! Also, it was written in that he could have a hand signal for the teacher when he felt he needed to release vocals, and she would nod and he could leave the class and go outside to release the tics and then return quietly to class. And yes, absolutely agreed on being upfront with teachers and classmates! Although there will always be those kids that pick on others for whatever reason ....the vast majority were very kind and understanding once they knew what the tics were.
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Question for those that have found relief
Chemar replied to logismum's topic in Tourette Syndrome and Tics
My son's initial tics and OCD were so intense that it was debilitating. Meds made things much worse. So when we started the dietary modifications, supplements and other natural treatments, and saw the frequency and intensity of his waxing phases dramatically reduced, it was pretty obvious that we were experiencing success! One thing that helped greatly was to come to terms with the fact that people with TS tic. Period. So we understood that we were not necessarily going to see the tics totally disappear.....but to see them go from the predominant factor in his life, to something in the background....well for us that was tremendous success!! I can only answer from the TS perspective, and obviously if the tics are being caused by another factor, full remission is often the goal. -
If it is genetic TS then it is not unusual to see more members of the family with tics.
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Hi it is a regular measuring cup size where 1 cup = 8 oz. Just use a standard measuring cup like the kind used for cooking/baking
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Yes, my son was able to reintroduce foods ...in fact we all were as we did the Candida elimination together. I dont remember the exact time frame but it was about a month. Obviously when we re-introduced foods, they were healthy ones, as by that time we had totally eliminated processed, refined and all artificial food additives The book I mentioned also suggested how to reintroduce various foods
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It depends on whether he is allergic or reactive to any of the ingredients in the supplement. With Candida and due to die off, the symptoms can definitely get much worse before they start getting better. That is the pattern with herxing. http://www.thecandidadiet.com/candida-die-off.htm
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Cara, did you check the expiration date on the GSE? and also certain that he is not allergic to grapefruit? Not being sure of what else he was taking...hopefully the doctor will have mentioned any potential interactions that could have resulted in this intense reaction? He may be having extreme die off but still....having to go to the urgent care and get such strong medication for it ls not something I have heard before? I know the doctor said he had candida overgrowth but still...wonder if there is something else going on there? It is likely best to just stop and regroup and see what you doctor suggests as the next step. I hope he feels better soon.
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Question about immune system strengthening
Chemar replied to ilovedogs's topic in Tourette Syndrome and Tics
So sorry you and son have been ill Bonnie Of the many natural antimicrobials, we have found the most effective to be Olive Leaf Extract and either pure extra virgin coconut oil (we like Nutiva), or the supplement made from coconuts, Monolaurin There are many other foods and supps that also have antimicrobial benefits, especially garlic, raw honey, cranberries, cilantro etc Also good to take a natural probiotic like kefir (we like the Lifeway brand) Echinacea and astragalus and vitamin C are all great for the immune system, as is pycnogenol (pine bark extract) and grape (not grapefruit) seed extract. Plus all antioxidant rich foods. Hope things get better. (((Hugs)))