Chemar

here it is Philipians 4:6 I pray too for you to find that place of acceptance of what you cannot control and strength and wisdom to change that which you can, lmcgill Waxing and waning with TS is something I have had to learn the hard way to accept as not always having a trigger that I can identify. I do know tho that it is never as bad now as before we started all the dietary modifications, supplements, acupuncture etc and so we persevere with those as they really do help. We see the dramatic increase in the frequency and intensity of the waxing phases when we are not diligent on these, and so it has become a way of life for my son, and one that he now willingly manages himself at 18yo....he sure knows the difference!

that is fine to talk about Carolyn and soooo glad your Disney trip was saved the only commercial discussions we try to prevent here are by people who join simply to sell stuff or post affiliated links for which they get click thru commissions etc but active members sharing info on products or treatments etc is more than ok...it is welcomed

Hi I buy most everything at www.iherb.com as they are by far the most cost effective source I have found anything that they dont have I get from my local Vitamin Shoppe (also online at www.vitaminshoppe.com ) we use a lot of the NOW brand products as well as Jarrow

Hi Judy and welcome, tho so sorry for what brought you here just to add a few things here....please dont be surprised if ER doctors do *not* understand about PANDAS or strep titres etc! many conventional doctors are still very ignorant of all this. I am personally appalled that the pediatrician would give a child who was previously feverish and clearly showing enough alarming symptoms to be taken to ER, a varicella booster It is sad to say but as has been mentioned, the vaccine may well have made the whole situation worse. You would be well advised to first spend time on the internet and phone book finding a physician who is either INTEGRATIVE (ie a conventional doctor also specialized in alternative medicine) or a DAN doctor (specializing in autism treatment but usually very clued up on tics, PANDAS etc) or naturopath, D.0. etc as they have more holistic protocols and generally try to educate themselves on areas like this Phone around and ask specifically if they have treated for tics, PANDAS etc and ask upfront on costs, insurance etc so you dont get any nasty surprises as sadly some can be exorbitant Beginning your grandson on a healthy diet (eliminate all artificial food additives, artificial colors like red40 and yellow 5 etc, no aspartame/nutrasweet or sucralose/Splenda, no MSG, sodium benzoate, high fructose corn syrup etc etc) as well as a good pure multivitamin/mineral and additional magnesium (which the epsom salts baths can also supply if he is not sulfate sensitive) there are many other things that are helpful (you can also take a look at my signature link below on what helped our son) but until you have a more careful diagnosis, it is hard to specifically point to treatments most of all just take things one day a time and steadily eliminate things that make the tics worse, while improving diet and environment. here is a good article on tic triggers http://www.latitudes.org/articles/finding_triggers.htm I pray you will find clear answers and treatments for your grandson

Hi bmom so glad to read your update and praying that it continues this way blessings Cheri

just wanted to add again that my son cannot tolerate any fishoil supplements and we have tried him on many he can eat fish with no problem, but fishoil makes him immediately increase tics He gets his omega 3 mainly from flaxseed oil (supplements and as a food,) plus freshly ground flaxseeds with salad dressings, on cereals etc

Hi the fact that the antibiotic has stopped the tics is a very BIG pointer that your child may have PANDAS I am not a PANDAS mom so will leave the details to others who are, but it would be really good to keep your appt with Dr Murphy as she can run the blood tests for antibody titres and confirm the PANDAS dx, if this is what it is, and advise on maintained (prophylactic) antibiotic treatment

Hi we have more of a non-medication approach here so not sure how much response you will get. But I can recommend a good Medications Forum at NeuroTalk where you are likely to get more input on adderall http://neurotalk.psychcentral.com/forum72.html

sodium benzoate has also been implicated in the increasing inflammatory bowel diseases so prevalent in young people, plus a whole host of other bad stuff vanillin is nasty too honest, I feel deep concern for the health of the younger generations who are being filled with these poisons daily. and yet we have friends who think we are nuts about all this because they feel "if the FDA permits it, it must be safe"

yes, my son cannot use any fishoil but does use flaxseed oil for omega 3. fishoil increases his tics my husband can take fishoil without it increasing his tics

welcome Tami thanks so much for sharing your story and adding your voice. It is going to be good to get to know you and to see your progress on the path to wellness for your child. LOL yup...definitely a pediatrician that needed the boot eh!

hi ilovedogs when we were intitially on the anti candida diet to actively treat overgrowth, then we when totally yeast free and other modifications that we no longer adhere to rigidly Now we eat to prevent a re-overgrowth, maintaining with Candida Clear by NOW. We eat whole grains and minimal sugar, with emphasis on veggies, fruit, fish and poultry, with occasional beef and lamb. so we dont eat yeast free anymore, but low yeasted foods rather. However, when there is evidence of candida overgrowth being active, then a more rigid diet is needed

hi for us it was definitely the combination of the two my son doesnt have any food allergies, but he is very chemically sensitive and so we had to remove food additives. We had already started the supplements. which really helped a lot....BUT....it wasnt until we combined careful diet with supplements that we truly saw the remarkable reduction in his tic severity and frequency as well as reduced OCD etc We do not do anything "free" other than junk food free and artificial additive free, but we do eat organic and "whole" food made from scratch and we focus on a diet that is anti-inflammatory as well as anti-candida ('"yeast")

kallik have you ever tried L carnitine? some find it very benficial for all head related tics. Not everyone can tolerate this amino acid so if you try it do introduce slowly usual dose is 500mg per day re Mag taurate...we have never given it in combined form but have always supplemented 500mg taurine and 500 mg magnesium per day and my son gets sufficient calcium to balance the magnesium

I agree with that concept Caryn! We aply it not only to aim to prevent candida overgrowth but also re the artificial/chemical etc additives and other dietary things that throw my son's system out of whack so easily My son, and as a result all of us, have so benefitted from a whole new way of healthy eating and although in our case, we dont follow rigid diets in terms of allergy related, we do keep sugars and starches to the minimum and eat whole and pure and organic wherever possible. We have learned so many good substiutes for favorite foods and havent had to sacrifice taste and enjoyment. I know this has also helped my son enormously with the Crohn's symptoms Candida was actually the very first thing the team of Integrative Physicians had us work on way back when

i hope this works for you, itsme my son had the candida overgrowth eradication with diet and caprylate, followed by maintenance with Candida Clear..... and although it certainly helped his overall health and was a contributary factor, I believe, in his overall improvement with the diet and supps, it did not result in NO tics. Nothing has ever done that...and we have been down almost all the paths searching for that miracle! The genetically inherited TS that he and my husband have is, I firmly believe, triggered into manifestation by multiple factors. Every time something triggering is removed , the overall stress on the system is lowered and improvement follows. But they both still tic, albeit far less and with less severity than before. My husband is 61 and my son is now 18 re probiotics, we also use kefir by Lifeway as well as yoghurt from Stoneyfield farms. I buy them plain only nd then our family adds their own fruit, cereal, honey, etc to taste

nativeremedies.com has remedies for add/adhd that i have heard good things about my son does not have hyperactivity but does have ADD Omega3 and gingko biloba helped him very much....tho hard to say whether the combination of these with his other supps may have had the overall benefit for children who do NOT have autoimmune issues....borage oil is supposed to be very helpful for ADHD

hi my son took 5htp at 50 mg each evening for a number of years it really helped with his OCD and did not increase his tics. made him sleep well too my husband cannot take it...makes him "wired" they both have TS and OCD

kallik this could be what is known as sensory integration dysfunction, which many kids with neuro issues can have here is more info on it http://www.out-of-sync-child.com/ my son had a 3 month course of occupational therapy spcific to the techniques ms Kranowitz discusses in the Out Of Sync Child book, and it was very helpful to him, also teaching us self help methods to reduce this hypersensitivity. For him, light, sound, tactile and smell and were on a very hypersensitive scale not sure if this is what is causing the light and sound sensitivity for your child but may be worth checking into

hi airbucket yes the yeast die off toxins can cause large tic explosions and mood swings as well as leave one with digestive upset and feeling real yucky epsom tubs and plenty of pure water are great at helping and pure lemon juice tea is a big help too (cup hot water with juice of half a lemon, add honey if sweetening needed) i am assuming you are also giving probiotic (I still personally prefer the natural ones like kefir and *pure* high culture yoghurt) acupuncture and reflexology etc are very helpful during any form of detox too

hi Michele yes borage, evening promrose etc are higher in the 6 and 9s, altho borage does also have a good 3 content I believe. Borage is a great herb, and it is known to help with ADHD and much more and evening primrose is something I take myself...wunnerful for us ladies I used to give my son the flax/borage/evening promrose combo till he was dx with Crohn's and was then told to immediately stop supplementing the 6 and 9 and only give omega 3 in addition to the EFAs of course from food sources. Once again where things that are overall good, can be not good for an individual because of more than one issue in their system. when there is any form of auto-immune disorder, then best to go low on omega 6 & 9 and high on 3 my son can eat salmon and other omega 3 rich fish, but he cannot tolerate fishoil supplement, as it greatly increases his tics he takes flaxseed oil instead for the omega 3 (1000- 1500mg per day is what we were told) and he also eats cereals rich in flaxseed as well as we grind frech flaxsseds and use in salads etc

hi Michele forgive for not remembering, but dont you have a PANDAS child? if so avoid omega 6 as it promotes inflammation, while omega 3 dampens the inflammatory response. In autoimmune illness one wants to avoid any increased inflammation omega 3 from flaxseed oil is a good alternative for those that cant take fishoil

Hi Brooka I hope you got my PM reply to yours about the doctors and the tests hoping you find a good doctor to help you remember, as I explained in the PM, if their are other issues at work, eg PANDAS from strep, or heavy metal overload, pyroluria, candida "yeast" infection etc...then the supplements may not work correctly until those other issues are resolved i did link you to what we did to help my son but here it is again. It may not be right specifically for your children's needs, but can give you a baseline to discuss with the doctor maybe http://www.latitudes.org/forums/index.php?showtopic=687

hello just a reminder that we do NOT permit commercial URL linking on this forum edits will be done to remove any commercial or solicitation links thank you

Hi Debbie and welcome I am in Florida so cant be of help re docs in your area but just wanted to say "hi" and so glad you have Sheila's book