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Found 15 results

  1. I should start by saying that is an amazing site. I always feel that I am alone on my anti-pharmaceutical island. My 6 year old was recently diagnosed with Tourettes. I feel like I was left dangling by the pediatrician without any directions on how to proceed. I have an appointment with our nurse practitioner as I want to do blood work to see if there any nutritional deficiencies. Without guidance from a doctor (we dont have a doctor as I didnt vaccinate my children), I need help. What type of nutritional deficiencies should I make sure to test for? Are there any other tests I should request? Bacteria? Can you test for Panada? Allergy testing obviously but anything specific...? Thanks!!!!
  2. Hi, I'm glad I found this forum, seems like a very resourceful forum, so I'm hoping that I can get my questions answered. A bit about myself - I'm a 39 year-old male, diagnosed with TS around 7-8 years old. I have taken meds like haldol and catapress (sp?) and both turned me into a vegetable, as I kept falling asleep, and couldn't focus too well. Since about 11, I stopped taking meds altogether, and my symptoms have been a bit of roller coaster ever since. My main symptoms are facial tics, muscle tensing in the neck and shoulders, forced breathing, and repeating words and/or actions until I 'get it right'. At times, it can be taxing to the body, as i feel muscle aches and pains. I do try and stay active and try to workout on a consistent basis, as well as maintain a healthy-ish diet, which helps. I have been reading a ton of articles about magnesium and b complex to be main supplements to possible assist in reducing TS symptoms. I talked to my doctor about trying supplements, and he told me that it sholdn't be a problem. He recommended that I take between 400-420 mg of magnesium, coupled with a b complex bill for a couple of months and see how I react to that. I also take 5000 IUs of vitamin D3, since i hvae a deficiency there as well. So with that info, I then found that there are different types of magnesium that are better absorbed by the body. Based on several forums and articles, it seems as though magnesium glycinate is a good choice for tourettes. I also discovered that magnesium is easily attainable through natural foods (leafy greens, nuts, seeds), and shouldn't be too hard to reach the recommended 400-420 mg per day. So my question is, is it better to just get your dose from natural foods, or better from the supplement? Also, would it be feasible if i switched it up between natural foods some days and supplement on others? Sorry for all the babble, any thoughts, adivce or recommendations are greatly appreciated. Thanks for the help!
  3. http://vipbrainfitness.com/wp-content/uploads/Kaplan-Treatment-of-mood-liability-and-explosive-rage-with-minerals-and-vitamins.pdf I know this study was done in 2002 but I use several of the supplements mentioned in this study with my son. Thought the article might be helpful to someone else.
  4. Hi. I was told to post here, so I thought it would be best to just repost what I did in the tic/Tourettes forum. Hope that's okay: Posted Yesterday, 08:48 PM First, I want to thank Sheila and the staff for their amazing web site/forums and incredibly helpful book. I am so glad I found these amazing resources!! Please excuse the long post, but it's been a long story.... But it is: My 8 y.o. son started ticcing when he was 4--mildly, no one really noticed but me. Then, they went away within month or two. When he was 6, they came back. He started ticcing more regularly but still mildly and intermittent. In March of 2015 at the age of 7, his tics became so bad it was completely dramatic. Happened two weeks after having an ear infection and being diagnosed with seasonal allergies. Having read about PANDAS, in May, I asked for strep testing after he had the ear infection. His ASO test came back at 707 (normal is up to 200). They put him on antibiotics and he was tic free for two months--May until July. Then we saw a neurologist who said he doesn't have PANDAS because it's so rare and he didn't have the dramatic change, I guess. I still didn't believe it so we had his ASO repeated in July and it was in the 400s. His pediatrician said it was coming down, so the strep was not the reason for the tics. Then in September, I wanted to see the levels again, and it was lower but still in the mid 300s. I pleaded with the doctor to giv ehim antibiotics. She did, Amoxicillin 10 day trial. But no improvement in tics. In November, we had him tested for the last time and it was still in the low 300s. His tics went from eye blinks, to facial rolls, to throat clearing, to grunting--all at once or separately. The grunting has been going on since October. It happens several times a minute. Sometimes several times a second, it seems. Then when I had enough of no one really caring, I wanted to get a final opinion, so we saw a PANDAS expert in December, Dr. Josephine Elia at Nemours/DuPont in Wilmington, DE. She was great but said he didn't have PANDAS because we have a family history of tics (my dad has motor tics but no vocal tics). She did a thorough evaluation of him and said although he didn't have PANDAS, he looked allergic so recommended allergy testing to us. Even though to anyone else, including his parents, he didn't appear the least bit allergic. But I guess they can tell from the color inside your nose (grey?). We also put him on Claritin and then Zyrteck for 6 weeks (as recommended by Dr. Elia), as well as a netti pot. No improvement in tics. We also did a dairy-free trial for two weeks and no improvement. We saw a great allergist in King of Prussia, PA, who has an integrative medicine background. She tested him for 55 allergens and found he's allergic to just about every outdoor allergen, dust mites AND our dog (as well as cats, but we don't have one). We would have never guessed he was allergic as he's never had any symptoms other than seasonal ones in the springtime--no other time. Could this be the allergy coming out in tics? Or is it just a trigger to the tics? It breaks my heart that he's allergic to our 10-year-old dog that we've had since he was a puppy and before our son was born. The allergist said we don't have to get rid of our dog, but that we have to make a lot of changes, that we're prepared to do. Dog out of his room/daily vacuuming/HEPA filter/ dog shampooing weekly. And then the supplements (high end/expensive) Omega 3s, Probiotic, Multivitamin and B-Complex. Tonight he started shoulder shrugging and neck bending. It's bad. Just looking for direction. I'm glad we have some answers in that he definitely has allergies, but I just don't know what to do with this information. Other than treat him with the supplements and see if it helps. Do you think it's the allergies causing the tics? Any advice is appreciated. Thank you!
  5. First, I want to thank Sheila and the staff for their amazing web site/forums and incredibly helpful book. I am so glad I found these amazing resources!! Please excuse the long post, but it's been a long story.... But it is: My 8 y.o. son started ticcing when he was 4--mildly, no one really noticed but me. Then, they went away within month or two. When he was 6, they came back. He started ticcing more regularly but still mildly and intermittent. In March of 2015 at the age of 7, his tics became so bad it was completely dramatic. Happened two weeks after having an ear infection and being diagnosed with seasonal allergies. Having read about PANDAS, in May, I asked for strep testing after he had the ear infection. His ASO test came back at 707 (normal is up to 200). They put him on antibiotics and he was tic free for two months--May until July. Then we saw a neurologist who said he doesn't have PANDAS because it's so rare and he didn't have the dramatic change, I guess. I still didn't believe it so we had his ASO repeated in July and it was in the 400s. His pediatrician said it was coming down, so the strep was not the reason for the tics. Then in September, I wanted to see the levels again, and it was lower but still in the mid 300s. I pleaded with the doctor to giv ehim antibiotics. She did, Amoxicillin 10 day trial. But no improvement in tics. In November, we had him tested for the last time and it was still in the low 300s. His tics went from eye blinks, to facial rolls, to throat clearing, to grunting--all at once or separately. The grunting has been going on since October. It happens several times a minute. Sometimes several times a second, it seems. Then when I had enough of no one really caring, I wanted to get a final opinion, so we saw a PANDAS expert in December, Dr. Josephine Elia at Nemours/DuPont in Wilmington, DE. She was great but said he didn't have PANDAS because we have a family history of tics (my dad has motor tics but no vocal tics). She did a thorough evaluation of him and said although he didn't have PANDAS, he looked allergic so recommended allergy testing to us. Even though to anyone else, including his parents, he didn't appear the least bit allergic. But I guess they can tell from the color inside your nose (grey?). We also put him on Claritin and then Zyrteck for 6 weeks (as recommended by Dr. Elia), as well as a netti pot. No improvement in tics. We also did a dairy-free trial for two weeks and no improvement. We saw a great allergist in King of Prussia, PA, who has an integrative medicine background. She tested him for 55 allergens and found he's allergic to just about every outdoor allergen, dust mites AND our dog (as well as cats, but we don't have one). We would have never guessed he was allergic as he's never had any symptoms other than seasonal ones in the springtime--no other time. Could this be the allergy coming out in tics? Or is it just a trigger to the tics? It breaks my heart that he's allergic to our 10-year-old dog that we've had since he was a puppy and before our son was born. The allergist said we don't have to get rid of our dog, but that we have to make a lot of changes, that we're prepared to do. Dog out of his room/daily vacuuming/HEPA filter/ dog shampooing weekly. And then the supplements (high end/expensive) Omega 3s, Probiotic, Multivitamin and B-Complex. Tonight he started shoulder shrugging and neck bending. It's bad. Just looking for direction. I'm glad we have some answers in that he definitely has allergies, but I just don't know what to do with this information. Other than treat him with the supplements and see if it helps. Do you think it's the allergies causing the tics? Any advice is appreciated. Thank you!
  6. We see Dr. B in NY. He recommends lots of supplements, I am on board with strengthening his immune system. However, I am at a total loss for how to get him to take all the supplements. He's a picky eater anyways. He is dairy free, and right now, this is his first PANDAS episode he is not eating well. Sneaking it into food isn't working well, he will just say, this tastes bad! How do you get these great immune boosters and inflammation reducers into the kids. He is only 4.5 years old. Thanks for your advice! Also would love advice on how to get started on GF or Yeast Free diet….feeling overwhelmed!!
  7. Hi, folks, We saw a lot of OCD relief when my ds14 went on ibuprofen. Many others report the same. We are beginning to try pterostilbene supplements. There are a few companies out there who have them. VERY powerful bioavailable natural anti=inflammatory. I don't use this company with the link below, full disclosure. But this is a nice summary. http://www.pteropure.com/ptero/index.html I would also call attention to the work of Harvard's David Sinclair and NAD as possibly helpful. Much of the work on the cells that age and reducing this aging process can have applications in our own lives, and our children's. Reverse the aging process, reverse aging of the brain that comes with our children's condition. https://www.yahoo.com/health/researcher-hunting-the-key-to-aging-believes-95193101362.html We will let you know how this goes. Celebrex, with all its side effects, has had some good success with a couple of people's children here. Why not a more natural more powerful version?
  8. My son has been having a rough time with viruses the last several months. I know there are many herbal and natural supplements that can help keep this under control. He does take vitamin C with rose hips and a citrus bioflavonoid complex and L-lysine 1000mg. I was wondering if there was just something better that I could give that would provide a better defense against viruses. For some reason his body picks them up very easily. He has been in and out of the hospital for IVIG treatments which does not help this. Within a week to 10 days after being in the hospital, he seems to come down with a virus. My son just had his 3rd LD IVIG treatment and has a runny nose. Any suggestions on supplements?
  9. Has anyone tried using flaxseed oil as an anti-inflammatory? All I've read about it says it's a good one. I can't remember where I read that something in it may not be good for PANDAS kids - wow, that was vague. I wonder if I should try it...
  10. Hello everyone, I will be brief so you can read me without get bored. I am 22 years old, had been with OCD and motor tics from 8 years old approximately, this tics are all about crushing joints and jaw clenching (my social hidden tic) I live in a shitty comunist country, I am sure I know more about tics that doctors here I don't want to get drugs, I am convinced to fight this from a comprehensive way Supplements will be one of this ¿could you people help me with main and basics must I take? ( I will buy each one for separately because my country condition ) Thanks for all, this website and you people that are sharing expriencies here are tremendous helpful
  11. Hoping someone here can help me with vetting this company? Sending DS off this summer for three weeks . . . and then hopefully college in a year . . . and staring down the barrel of how do we handle all these supplements? What teenager/college kid is going to take a dozen pills each day without being reminded? So I thought I'd see if I could find a place that would make a custom "multi-vitamin" for us that would contain only those substances we KNOW work well for DS, without any of the extras found in standard multi-vitamins. Found this company and did a little trial "build" of our custom supplement . . . almost seems too good to be true. Apparently, we can get the appropriate amounts of NAC, D3, quercitin, B6, zinc, etc. in a single capsule with a 90-day supply costing approximately $1.37/day! I KNOW that's cheaper than what we're currently spending, and it would reduce the pill intake 10-fold! The only additional items he will need will be fish oil which, I suppose for obvious reasons, can't be compounded here. http://www.vitaganic.com/;jsessionid=A65FAC55874682151477999C5522791A Thanks!
  12. I have been reading some old post on inflammation. I would like to know more about fish oil, bentoninte clay, oil of orgeno capsules, epicor, and mesosilver. How does is help your child with inflammation and pain. How much do you give if you feel comfortable giving out this information. Or you can pm me. My son has been living with daily pain ( headache, scalp, nerve pain). I do give him fish oil but not 3,6 ,or 9. In cooking, I use butter, olive oil, and coconut oil. My son has had the esr and cpr test and they are always in the normal range. However, recent testing indicates high Kynurenic acid and antibodies in Cunningham test panel were high. I have complained to an immunologist about my son's high pain levels. Our cardiologist has tried several different pain medications but nothing at this time seems to take the edge off except 800mg of moltrin. However, moltrin this high causes a sleepy effect, so that's not too helpful when trying to get school work done. However, not much school work was acomplished today. I have tried a lower 400-600 dosage every 4 hours but I cannot tell a difference and neither can my ds. BTW my ds is 5'10' and weighs 190lbs. His pain levels range from an 8 and can go all the way to 10. When levels get this high, he wants a dark room with no noise. We have been to the hospital when pain levels were high and he was given morphine. It took the edge off for awhile but not for long. I have also read about Low Dose Naltrexone for inflammation. Does this help anyone? If you have have the antibodies in the brain in a high range, is this normal to expect high levels of pain? Is this what causes the pain problems in your kids? I have also been reading up on the Kynurenic acid and understand that it causes the nerve pain with the presence of CaM Kinese. I guess I'm really trying to make sense of where my son's pain is coming from. I know it's not all from anxiety. He washes his hair every two weeks because he has very oily skin. But when he does it makes his headache and scalp pain worse. His vocal tics also start up but settle down about an hour later. He shampoo yesterday and today has been awful with incresed pain levels. I have been using the moltrin yesterday and today. But I want some pain relief for my son. Do you have any suggestions on some natural supplements? I am concerned keeping my son on moltin for a long period of time. But what would be considered a long period of time to be on moltrin? Just feeling frustrated. Sorry for the long post. Rachel
  13. Hi everyone. I was wondering if there was a list of supplements or naturopathic treatments that people have used, whether with success or without. I've seen many discussions and signature lines with all the stuff people use and it's hard to keep track of them all. A comprehensive listing would be helpful. For example, what is NAC and how it is helpful? (I'm going to Google that now). I just put my DS9 (at 60lbs) on magnesium glycinate supplements (120mg), omega 3's (672 mg EPA to 168 mg DHA) and he's on probiotics. That's about it. Also thinking about going gluten free. Thanks for reading!
  14. Hello all, I am fairly new here (but unfortunately not new to PANDAS) Tomorrow we will be giving my 9 y.o. (ADHD, ODD, OCD) son his first IVIG and I need a little hand holding/moral support. I am so nervous and would love to hear any success stories out there. Also, we have him on lots of supplements as well as 2 abx (Azithromycin and a Cephalasporin). I understand that a common side effect is naseau and vomiting. I am assuming that for the next several days we should hold off on supplements (even the ones that help with his huge YEAST problem from the abx??) Any thoughts here? Also what about the antibiotics? I assume to continue. Dr. Bouboulis says keep him on them, so we probably will do so. Any other advice? Do most of you who have done IVIG experience some regression before things get better? We have been through so much and have lots of PTSD concerning our son, so the better prepared we are, the better we can support him! Thanks for any help!!!!! Alisa
  15. Has anyone used Seroplus? It was suggested for my ds. I have not seen any reviews for it online and I am curious about others' experiences with this supplement. We were hoping it might help with irritability.
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