Jump to content
ACN Latitudes Forums
  • Announcements

    • Administrator

      Forum Community Guidelines

      Forum Community Guidelines

      Our forums provide support for people dealing with neurological and related issues. Everyone joining this community should find it a safe haven where they are treated with respect, civility, and understanding.

      Your agreement as a user: You agree that you will not use this forum to post or send messages that are knowingly false, inaccurate, abusive, vulgar, obscene, profane, or sexually oriented. Text should not be defamatory, harsh, accusatory, intimidating, slanderous, an invasive of a person's privacy, or violate any law. Doing so may lead to you being banned (and your service provider may be informed). The IP address of all posts is recorded to aid in enforcing these conditions. You agree that the webmaster, administrator, and moderators of this forum have the right to remove, edit, move, or close any topic at any time should they see fit. You agree not to post any copyrighted material unless the copyright is owned by you or by this forum/website. Advertisements, solicitations for services or business, most research requests, as well as any type of research on the content of these forums by third-parties, are prohibited. Unauthorized use or reproduction of posts on these forums is not allowed. Any user who feels that a posted message is objectionable is encouraged to contact an administrator.

      Announcements, media requests, and research requests

      These need administrative approval. Please send to an administrator before posting.

      Inappropriate content

      Members are here for support and education. Check the list below for types of posts that are not allowed: Advertisements Flames or messages meant to intimidate, criticize, or harass others Threatening or obscene messages Messages discussing a private message (PM) from others Copyrighted materials that you do not own the rights to, except educational or research articles Messages containing or condoning illegal acts; also messages of suicidal intent Direct discussion of politics (please avoid) Specific or strong religious views Requests for donations for other organizations unless approved by administrator Solicitation of members for research, media projects or other projects, without prior administrative approval About links for other websites:

      You may have links in your profile as long as they do not violate our guidelines (above). Links within a post to online resources and articles are generally OK. Do not post links to other forum communities with the aim of soliciting other members to that community, thereby taking them away from this community.

      When a guideline is violated

      If you violate a guideline, you will be contacted by PM or email. We will try to resolve things amicably. We don’t like to ban members and rarely do, but this is an option.

      Updated March 19, 2010
    • Administrator

      Disclaimer and Privacy Policy

      Disclaimer

      The ACN Online Discussion Boards are intended to provide helpful information and allow sharing of ideas. Postings should not be considered as medical advice. All users should consult with their healthcare professional for questions or medical decisions.

      Users must accept full responsibility for using the information on this site and agree that ACN, Latitudes.org, advisory staff or others associated with the site are not responsible or liable for any claim, loss, or damage resulting from its use. Please remember that we do not actively monitor all posted messages and cannot be responsible for the content within. We can also not guarantee that access to the site will be error-free or virus-free.

      Reproducing any document in whole or in part is prohibited unless prior written consent is obtained. Web pages may be shared when passed on with the URL.

      Information posted on the Forum is done so voluntarily and will be accessible to the public. The material posted may be used by ACN (without the identity of the user) for publications or educational purposes. No compensation will be provided for the use of this material.

      Note: ACN is providing this service with the expectation that users will abide by the guidelines provided. We reserve the right to monitor postings and remove or refuse inappropriate and questionable material, as well as remove dated postings at our discretion, for any reason.

      Privacy Policy

      When you register with the Forum, you need only give your email address, which is available only to the Adminstrators and will not be shared on the Forum site or with others in any format. Forum users will see only the user name you choose to provide.

      Our web server collects and saves default information logged by World Wide Web server software. Our logs contain the date and time, originating IP address and domain name (the unique address assigned to your internet service provider's computer that connects to the internet), object requested, and completion status of the request. We use these logs to help improve our service by evaluating the "traffic" to our site in terms of number of unique visitors, level of demand, most popular page requests, and types of errors.

      You have the option of enabling to save your username and password data when you are accessing interactive parts of our websites, to allow your web browser to "remember" who you are and assist you by "logging on" without you having to type your username and password repeatedly. This is known as a cookie and it can be enabled or disabled in your control panel. Cookies are small files stored on your computer's hard drive that are used to track personal information.

      Except for authorized legal investigations, we will not share any information we receive with any outside parties.

      Updated March 19, 2010

my2sons

Members
  • Content count

    70
  • Joined

  • Last visited

  1. I am in the same boat as you. Time for my DS to get the Tdap booster, I am personally not going to risk it. Getting a medical exemption from our doctor.
  2. 23andme

    I am on the coast of SC so yes it has been warm and wet. I have been thinking though, we did the OATS test and he was high in salicylatez and oxylates. Once we removed/ minimized most fruits and veggies and added the enzyme No Fenol his tics reduced and have stayed minimal to none except for one infraction over the summer, which sent his tics soaring for a week.well, he recently developed a couple of warts on his feet that I began treating with Grapefruit Seed Extract. Also, he began using deodorant in December so I am wondering if it could be one or the other of these two things or a combination of the two. That said, he does have environmental allergies and mold is one. They used to be pretty severe but have improved to the point of tolerable without meds as long as we stay the course with his diet. I have not tested for PANS/PANDAS since he does not get sick very often and when he does it is mild/short lived and his tics do not increase. Also, most of his other issues - ADHD, anxiety, sensory issues improved/diminished with dietary changes. He did have Strep, influenza A,and influenza B at the same time during August. He did get a high fever and had night terrors during fever but his tics did not spike during or after.ugh! Dealing with this is so emotionally exhausting.
  3. 23andme

    I downloaded my 23andMe results to Nutrahacker for interpretation. My DS was homozygous for one COMT gene and heterozygous for 4 others. The suggested supplement to consider for all 5 COMT genes is Hydroxy B12 and it is recommended that methyl B12 and methyl donors be avoided. He was also homozygous for two VDR genes suggesting supplementation with vitamin d3, sage, rosemary and again, to avoid methyl donors. Regarding the D3 I find it curious my DS's tics increase every year after Christmas (when it's cold and he is not outside as much, or as active.) I wonder if the low D3could be playing a role? We have been low to no tics for almost a year now (he is 12) and all of a sudden our protocol seems to have quit wotking and he is ticking constantly with anew vocal tic. I could usually trace it back to a diet infraction and reign them in with Epsom salt baths, activated charcoal, or baking soda in bath, Glycine or taurine. But nothing is working this time. Also, it's anew tic. His standard tic for years has been a yell. I have two kids with tics and the stress of it all is about to drive me to the breaking point. Sorry, I am teetering on the edge here.
  4. 23andme

    I am confused about the 23andme results for my DS's vs. Their OATS or ONE test results. They were both homozygous for COMT suggesting supplementation with hydroxy B12 but their nutrievaluations indicated their levels for B12 are fine. So does that mean I should not supplement or does it mean they need more than the average person? Also, they were both homozygous for the GAD1 gene, indicating high glutamate and low GABA and to supplement with Taurine, The anime, NAC, Glycine, VitaminB3. But when tested, my youngest DS was very high in Taurine already. So I am not sure if that means I should avoid taurine with him or if his body is dumping it and needs more. Also, should a supplement with all suggested supplements or just try each til I find one that works. So confused. I am in SC and no doc's here that really understand the genetic testing.
  5. We started using Houton's enzymes No Fenol a year and a half ago and they helped a lotto bring down my oldest Dan's tics and keep them down as long as he took them whenever he ate. He is salicylate sensitive, high oxylates, some IgG food sensitivities. When my youngest DS's tics started I started him on enzymes too. After testing him, he did not have any yeast, IgG food sensitivities, and does not seem to be salicylate sensitive. I recently stopped the enzymes with him because I felt they were increasing his tics. His tics did decrease after I stopped the enzymes. Now, my oldest DS seems to be ticking more after immediately giving the same enzymes that previously was so helpful. I am scared to stop them because of his salicylate issues. Anyone experience this kind of benefit from enzymes and then a reaction after a period of time? Does it mean he does not need them anymore? I know he still has issues with salicylatess.
  6. Son is CURED of severe tics

    Hi Skylar. So happy to hear of the success you have had with your son. I have two boys, 12 and 9, with tics. They also have a cousin with tics. All started at the magic age of 9. Crazy. Anyway, after 2 years of tests, supplements, trial and error, etc. I got my 12 year old to a stable place with his tics and ADHD. And while he is tic free and calm most days, he will eat something here and there that provokes the ADHD and tics (although mild compared to what they once were.) But, it is a constant balancing act. I am just now beginning to address the tics with my 9 year old. As with my oldest, I think food is the issue. This LEAP test sounds promising. How long has it been since your son has been tic free? And is he 100 % tic free? Do you still follow an Organic diet with him? We are already GFCF, corn free, GMO free, mostly organic, low sugar, low salicylates.
  7. No tics with fever

    Yes, both my targets tics stop with fever/illness
  8. 23andMe

    Just got one of my DS's 23andMe results. Any suggestions on the best site for the most helpful interpretation of the raw data?
  9. I joined this forum 2 years ago when my oldest DS began ticcing when he turned 9. He had a terrible constant screaming tic. We removed gluten, dairy, preservatives, dyes, flavors and got improvement. We supplemented with mag.citrate, borage oil, p5p, vitaspectrum multi, a high probiotic, got improvement. We chelated for metals, treated for yeast got improvement. We regressed. Then we tested for IGg food sensitivities, ALCAT, and the OATS. We removed more foods, got improvement. Removed GMO's, treated the gut, and added digestive enzymes, got improvement. Lastly, we added Taurine. He currently eats a Organic, no corn, no eggs, no wheat, no dairy, low sugar diet, takes melatonin, taurine, probiotic,digestive enzymes and he is doing great. He is a completely different kid than he was two years ago. Now, my youngest DS just turned 9, that magic age, and he too is ticcing and like his brother, his tics are mostly vocal, including swear words. He has been on the same diet as his brother these past two years, except he eats eggs. He has also been taking probiotics and enzymes since last summer. Had him tested for IGg food reactions, nothing. Ran the Genova ONE test, was low in Thiamine(B1), Biotin (B7), and Riboflavin (B2). Normal in B6 and Magnesium. No yeast.low in lysine, glycine, and arginine. High in cysteine, taurine, and a few acids. for supplements, I have tried P5P, Mag citrate, multi, molybdenum, b complex, zinc, b1, b2, b7, Gaba, taurine, lysine, glycine, arganine and nothing is helping. Most all seems to make things worse. Any suggestions are appreciated. Oh, and I just did the 23andme test on them both. Awaiting results. Has anyone found this test helpful for treatment?
  10. Tried Cannabidiol (CBD)?

    Also interested in this. I have a friend who is giving it to her PANDAS child and she believes it to be helping. My DS is not PANDAS though. I have purchased some of the oil but have been scared to try it on him. I tried it and it gave me severe anxiety, but antidepressants do that to me, too. Maybe it is because I don't need it? Anyway, I would like yo hear any testimonies as well.
  11. Has anyone on here gotten a negative reaction from giving powdered form of l -glutamine? Also, my DS's primary tic is a yelling tic, we brought it down to almost non -existent for about 8 months with diet modifications but it went back up at christmas and i cannot seem to get it back down. I am thinking of trying taurine. Any thoughts?
  12. Pipi, did your daughter have food sensitiviites when you went 100% organic? Do you eat only grass fed, free roaming chicken, beef, pork, etc? We have been trying to avoid GMO's so we eat about 80 to 85% organic but I just read an article that even grass fed, free roaming meats are sprayed with a GMO corn based lactic acid when processed and that people who are trying to eat 100% clean diet are reacting to this. It is so frustrating trying to eat TRULY clean. It seems nothing is safe. I feel like every time I get a handle on my DS's diet I find out something harmful about some other food item and have to eliminate something else. My DS has a pretty limited diet right now. I want to feed him 100% healthy organic foods. He can eat so little now but I am scared to start adding back in the organic version of the things he previously reacted to: Oranges make him tic, blackberries make him extremely ADHD, he reacts to tomatos, corn, soy, dairy, coconut, cocoa, zuchinni, onion, chicken, turkey, eggs, tumeric, paprika, nutmeg, vanilla,bananas, papaya, apples, grapes, strawberries, green beans, brocolli, cashews, almonds. I guess what I want to know is did your daughter have food sensitivities and if so, did going organic make a difference there too? Did she ract to the non organic apple, but not the organic apple?
  13. Following...my ds does the opposite...when he gets sick his tics go down. Interested to hear what others have to say.
  14. Topomax

    Hedgie, did u try removing milk/caesin, in addition to gluten? Also, dyes, artificial flavors and preservatves...msg, nitrates, nitrites, etc.? We did medicine-it was not topomax, can 't remember the name - for 1 month. The tics went down for about two to three weeks, then went back up. But in that month he gained about 8 lbs., was horribly constipated, very irratable, and very depressed. My son too was 9 at the start (he is now 10). Seems like they began right about the time he turned 9. Does your son have other issues like eczema, allergies, asthma, constant bruising, nose bleeds, constipation, chronic gas, bloating, joint pain, etc.?
×