Heather

This is out of Dr. McCandless's Book: She discusses using DMG which benefits about half of the ADS children who take it. However, she warns that it may cause hyperactivity which may be controlled by adding folic acid. Then I quote from her book: "If the hyperactivity persists even with the folic acid, then the DMG should be discontinued, as approximately 15% of children are reported to be intolerant of methylating agents such as DMG and TMG (the "undermethylators.") I have heard some mother's state that TMG does not cause the hyperactivity that DMG does; TMG is DMG with one more methyl group, increasing serotonin through a precursor called SAM(e), an enzyme important in acetylcholine synthesis. However other mothers report that when they changed from DMG to TMG they noticed hyperactivity and returned to the DMG without any problem. Children's chemistries are so unique that sometimes trial and error with these non-toxic substances is the only was to find out whether they are beneficial. Both DMG and TMG have a tremendous safety record." Heather Heather

Just to add my input here, my son is also terrible with short term memory. He is at the top of his class academically and he astounds me with the mental math he can do in his head at 8 years old, yet he walks out the door in the morning right past his knapsack for school and wouldn't even realize he didn't have it until he got to school and needed his homework. He forgets sweaters, mitts and water bottles daily. When he goes somewhere with a friend to any social outing I send him with as little as possible as whatever he takes does not come home with him. Go figure!!! Heather

Claire, I am sorry but I can't remember where I read the information about the echinacea. Last winter I was on here so much reading literature from so many sources and I would often read all night jumping from site to site. It was after I noticed an increase in tics when I gave my son echinacea that I started doing searches on it and remember reading in more than one place that it should not be used for people sufferring from autoimmune disorders. However, I have no idea at this point what the specific articles were....sorry. It does make sense though since it is an immune booster that it would cause this reaction in PANDAS kids. Heather

Caz, We used NDF for a couple of months and the my son's tics improved, however we were doing many other things as well so not sure if it was the NDF that made the difference or not since we haven't had a hair analysis since then. I am going to send his hair away for another test in the next week so I can tell you when the results come back if his aluminum still shows high. We have never used the urine test so can't help you there. Heather

Hi Dara, Welcome, and I share Ausclare's feeling that this site will help you more than any number of doctor's that you might visit. We are currently seeing a wonderful naturopath who has guided us through the healing but there were many things that I have learned through this site beyond what my naturopath prescribed. Since it is all very new research there doesn't seem to be one doctor who has all the answers. I also share your feelings of crying in despair on a daily basis when the tics were at their worst. You need to have faith that it will get better once you find the sensitivities. You are in the right place coming to this website and I am convinced you that you find some relief for your son once you try some of the treatments that you will read about on here. I joined the Feingold Association in the spring and found that while following this diet and removing TV/game screens from my son's daily routine that the tics could be stopped. We do not want to omit these things for life from our son so we have also taken other steps with supplements and have been able to reintroduce the triggers over the last couple of months with minimal reaction. If you go to yahoo and do a search on Feingold, the official site will come up for the Feingold Association in the States. It is basically avoiding additives, preservatives, colour/dyes and sometimes natural occurring salicylates that are in many fruits. It takes some work since different children react to different things so it is really trial and error until you find your child's sensitivities. If you join the Association for $100 you get all of the literature and they will give you a food shopping list that allows brand names that don't contain certain harmful additives. There is also a forum that you would have access to that has at least 50 posts each day with parents sharing information on food related issues, recipes, etc. If you read some of the backposts on this forum (Latitudes) you will see that Jeff is a big promoter of this diet and his family's tics go completely away when they are on this diet. Other common food triggers are milk, wheat, corn or corn syrup, chocolate, or peanut butter. We have also tested for yeast and heavy metals and are currently using natural supplements to help my son detox these toxic chemicals. Don't be discouraged if it doesn't happen quickly as the healing can be a long process with many highs and lows. I encourage you to read through some of the backposts on this site as each person has found their own sensitivities. If you have any specific questions while reading, just post them and someone will answer in a timely manner. There are many wonderful caring parents on this site and I don't know where I would be without it over the last several months. Heather

I just reread my aluminum reference range and it definitely says less than 8 not .8 so I am confused now too. Kimberly, if yours if from Doctor's Data too I wonder why your reference range is less than .8 and mine is 8 ? Heather

Susanna, The echinacea concern was probably something that I posted. Echinacea is an immune booster so if your child does have PANDAS which is an autoimmune disorder, ehinacea could actually aggravate symptoms since it boosts the immune system to attack its own tissues in these individuals. Echinacea had a bad effect on my son last winter and then I read that echinacea is a contraindication for people with autoimmune disorders. Heather

Ausclare, As I read my Hair Elements analysis from Doctor's Data it says that the reference range is less than 8 ug and my son measured 22 ug putting him in the 95th percentile. Being in the 95th percentile, I thought was very high, however, after reading Kimberly's result at 160, maybe my son isn't as high as I first thought. Heather

Susanna, My son's tics always became worse over the past year when he developed a virus. My naturopath prescribed an anti-viral homeopathic drop called pleo quente. We used this drop twice during viral infections and it seemed to help the tics subside quicker. Heather

We used Doctor's Data as well because I had heard they were the best. My son's aluminum was extremely high, lead and mercury moderately high. Heather

Caz, Interesting read you have there. I wrote in another post that my son is on Magnesium, B6, and Zinc. His tics are non-existent right now. There are 2 times that I slacked off, once with B6 and once with Magnesium and the tics came back both times. We did treat for yeast last winter but I haven't kept up consistently with the Threelac for yeast. When we did treat the yeast last winter his tics were significantly reduced even without the B6 and Magnesium (we hadn't started these supplements at that point). I do believe that Leo Galland has a valid point. I have heard about his book so much. I think I will hunt it down to read. Heather

Claire has researched this area in depth and I would just like to add a thought here if you haven't read this on a previous post. If it is impossible to completely eliminate TV, the smaller the screen and the brighter the room the less effect it will have. Also, the further away from the screen, the better. The worst experience we had was in a movie theatre. The LCD screens use different technology so that the flicker effect that causes this photosensitivty is not an issue in the same way it is on the CRT screen. Thanks for Claire for all of this information on screens. Heather

Is Transfer Factor a brand name? Never heard of them.

Evangelia, Just want to add my praise for your determination to help your son. I am sooo glad to hear that he is doing so well. You have taken all the right steps to have quick improvement. The long term healing is frustrating at times and there will probably be ups and downs. Don't get discouraged and keep reading the board. The answers are here and lots of caring parents will keep you posted. Heather

Ronnas, I am not totally up on this type of allergy testing and reflexology but I have read snipits of it here and there and some people swear by this type of treatment. It sounds like the arm resistence procedure is similar to the NAET treatment which a few parents on the Feingold site have written about. One person on the Feingold board came on to say good bye and that they would not be posting anymore since their child had been cured by using NAET. Anyway, as I say, I haven't had experience with it so can't claim success but have talked to others who have. BTW, my son's tics are virtually gone right now with the help of B6, Zinc and a Cal/Mag combo. We are still treating yeast and metals on an ongoing basis and I feel this imbalance will take a long time to correct. However, I am convinced that the B6 and Magnesium are what is doing it right now since there were 2 periods that we slacked off (once with B6 and once with Magnesium) and the tics were creeping back again. As soon as I got back on track with the supplements, the tics were gone. He is watching TV regularly and tolerating foods that were once major triggers. Heather

Glenn, As Claire has mentioned above, it sounds like your case may not be a true Tourettes as there is no Tourettes in your family background. My son's tics were very severe last winter and right now they are almost non-existent and have been for over a month due to various nutritional supplements. If you read the posts on this forum you will learn of various treatment protocols used to either stop tics completely or reduce them to a manageable level. Avoiding food dyes, additives, preservatives can be a good start, as well as using a good multi-vitamin to help correct nutritional deficiencies. I would suggest finding a good DAN doctor or naturopath if you are serious about using natural treatment to correct imbalances within the body. There are many success stories posted on this forum and although certain Vitamins seem to be common deficiencies (B6, Zinc, Fatty Acids, Vit C and E), every child develops different deficiencies based on their genetic makeup and environmental exposures so it is important to be tested and follow the advice of an expert in the field. Heather

I am also having trouble finding magnesium taurate. I live in Canada and I have not been able to find any stores that sell it. I went to order it online from the Vitamin Shoppe and the delivery charge is $22.00. Has anyone ever purchased this supplement in Canada? Heather

It is nice to see all of the Aussies connecting on here. Caz, There were many times I felt like you....just wanted to go to sleep and wake up and it be all over. It will come. I am finally getting to the point where the tics are not in my thoughts every single minute of the day. It has been a long time coming but belief in the healing and perserverence in finding the answers for your child will pay off. I remember many times when the tics would get worse over the last year and I would think "oh no, it's not working" and then I would realize there was always some reason for it to happen....a virus or a hidden ingredient I hadn't seen. Ausclare, I also agree that it is nice to feel responsible for the healing ourselves and learn the answers that work best for our children instead of waiting for the medical profession to give us answers and feeling totally at their mercy. The sharing on here is amazing and there were also many times when I would be stumped about something and sure enough, I would pore through the posts on here and the answer would pop up. Thanks for the information about failsafe. I have been reading up on it and it sounds like it is the same principle as Feingold. Marina, Yes, the food elimination may take awhile to see results so keep at it. There may be other airborne allergies affecting him as well. Hepa air filters may help. You are right, the chemicals are the culprits and it disgusts me now to read product labels and see the artificial ingredients that we are putting into our bodies. It bothers me so much that my son had to suffer through the sometimes debilitating tics because of what these chemicals did to his body. That is great that you found the failsafe for your older son when there was little to go on at that time. Keep sharing!!!!! Heather

Ausclare, I am amazed at your research and finding what works for your boys, especially in an area where you say it is hard to find any supportive doctors. My question is the same as EFGH.....failsafe diet??? It sounds like it might be similar to Feingold when you mention the fruit as triggers. Heather

EFGH, Glad to hear your son is doing so well. What brand of Mag Taurate do you use? Heather

Thanks Ausclare, I did not realize that these substances were actually called antioxidants. I had only heard of the GOOD antioxidants. Thanks for clarifying that. In the spring I became a member of the Feingold Association of the United States. The 3 substances that you mention above TBHQ, BHA and BHQ are the exact ones that Feingold tells you to omit from the diet. They have researched all of the Brand names that do not contain oil with these preservatives by phoning companies that produce and manufacture the products. They provide a published list of all SAFE foods which identifies brand names that do not contain these preservatives. There are hundreds, if not thousands of children (ADHD, tics, Aspergers, etc.) that have been helped by omitting these and other additives from their diet. Many members post each day with recipe ideas and sharing tidbits. I have heard of BHT being used in plastic wraps as you say, to keep foods fresher longer. I have heard of it being in plastic water bottles. Is there any way of knowing which plastic wraps use the BHT? Heather

My understanding on the theory regarding food elimination is that: When you eliminate the offending foods the tics will stop but this does not get rid of the yeast. The yeast is still in the intestine and will always affect your digestive system when you eat the triggering foods so you will have to avoid the foods indefinitely and you are not correcting the root cause of the problem. The goal is to kill the yeast to improve digestion so that you can once again tolerate the foods that you are sensitive to. As Claire said, you need to get rid of the yeast to reduce the food sensitivities. The goal is to ultimately to be able to tolerate the foods again that are triggering the tics. That is why I would recommend to you Ausclare to try an added supplement to kill the yeast. Since your son's tics returned severely with the trip to camp, there are still digestive issues that perhaps could be corrected if the yeast was gone. Heather

Sorry, to correct the above, I meant to say Antioxidants are scavengers that get rid of free radicals in the body that are destroying the immune system (not free scavengers as I wrote above) Heather

Belinda, Thank you so much for sharing your story. Your post had me in tears. I am so glad that you have experienced the success with your son. Your last paragraph is a feeling that we all share....the pain and fear that we feel to see our babies with these uncontrollable movements that sometimes become so severe they are debilitating to their life is often unbearable emtionally. My son was pulled out of school for 2 months as well during this dark time in our lives and like you, I have never been so scared in my life. Bravo to you and thanks again for sharing and emphasizing God's role in this path to healing. Heather

Ausclare, To add to the above, the Vitamin C you are taking is an antioxidant that is needed by the body to promote good health.