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Everything posted by my2sons

  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. 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. 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. 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. Yes, both my targets tics stop with fever/illness
  7. Just got one of my DS's 23andMe results. Any suggestions on the best site for the most helpful interpretation of the raw data?
  8. 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?
  9. 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.
  10. 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?
  11. 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?
  12. Following...my ds does the opposite...when he gets sick his tics go down. Interested to hear what others have to say.
  13. 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.?
  14. We use Klaire labs vitaspectrum as recommended by my son's doc. Google. I believe they have a powder.
  15. I have tried the L-carnatine before, I can try it again. Can't really say whether or not it helped before since we were seeing such improvement with diet. We had blood work done Thursday for the IGG food test and the ALCAT. It just becomes so nerve wracking with the constant screaming going on. I have wracked my brain trying to figure out this flair and what triggered it. I have no idea but i think it is gut related because his tummy has been bloated ever since the flair started. My dad hunts and has a deer processed into ground meat fot us every year. We just got this years supply about 4 weeks ago. My husband and I are wondering if maybe something was put into the meat that he is reacting to. We are going yo have to check.
  16. After 8 months of slow and steady progress to about 98% tic free my DS's screaming tic has returned full force. I am literally about to have a nervous break down. It's been up for three weeks now. I don't know how to do this again. I was so hopeful with his progress and so was he. I feel so defeated.
  17. It is scary and very overwhelming. We all feel your pain. Hang in there and use this forum liberslly. You will find lots of good help and support here. Gluten sensitivity is not an allergy so he does not have to test allergic to wheat in order to be Celiac or gluten sensitive. A lot of kids on here have responded positively to the removal of wheat, dairy and corn from the diet. You can Google Gluten and tics to read about the connection there and the Specific Carbohydrate Diet (SCD) is a good diet to consider. As far as doctor's/ practitioners go, look for an Environmental MD, Naturopath, or maybe a Homeopath.
  18. My son takes allergy shots. They do not make his tics worse. Meds did, the injections do not. Your sons compromised immune system, as indicated by his allergies, could be triggering or exacerbating his tics. Have you looked into diet modification?
  19. I have no idea what is going on. Talked to our doctor and he told me to start him on an antifungal and bring him in Friday. He thinks it is a regrowth of yeast in the gut. He is allergic to mould. He gets weekly allergy injections for his allergies. He also ate quite a few oranges over christmas. Oranges make him tic. Usually only lasts a bout 20 to 40 minutes though. Although, that is usually from one small clementine or a litle OJ. This time he ate oranges over a period of several days and some days he ate more than one. It has been 3 days since his last orange. Could it still be the oranges?
  20. My ds, 10, has tics. We started a GFCF, low sugar (natural sweeteners only) no chemicals/preservatives diet in April. We use supplements, a good probootic, etc. His tics have slowly and gradually improved ever since. Around the end of October we went corn and soy free, too. During this processmy DS would have periods when the tics would increase for a few days and then go back down, often to a new low or he would develop a mold new tic that would last a week or two. Well, we are at 8 months and his primary tic is increased and worse than it has been since we started the diet. Mind you, it is not where it was but, over the last two weeks his ADHD has been uncontrollable, his tics have increased about 35% to 40% and his sleep issues have returned. Is this just another healing regression or something else? Anyone else experience this with diet and healing? I read in a book re: Autism and the SCD diet that this is a common phenomenon that occurrs at 2,3,5,7,9,12,18, and 24 months and that the 9 month regression seems to be the worst but not sure if the same applies with tics. Experience or thoughts anyone?
  21. I have two sons with tics. My oldest Ds started with constant tics as soon as he turned 9. After several months of mild, transient tics he exploded with a constant, loud vocal, yelling tic. We saw an environmentsl physician, started supplements and a GFCF,low sugar, no artificial anything diet. We have seen slow, steady improvement of tics, adhd, sensory problems, irratability, sleep issues, social issues, etc every since. Well, shortly after startin diet my youngest started with a burping tic. Mild, hardly noticable. Well, he has recently progressed to an eye rolling tic that seems really bothersome. We have been on diet for a little 6 months. We are all natural, i make everything they eat from scratch. No dairy, no grains. I do organic as much as i can afford. I don't know what else to do for him, other than having his eyes checked. Othrr than removing dairy, what has helped everyone else? I have not explored PANDAS/PANS as my kids are not very sickly. They get colds a few times a year but not much else. They did have strep a few times when younger that was accompanied by vomitting and rash but have not had it in years. Thoughts, anyone?
  22. Look into the specific carbohydrate diet. Its for healing the gut. And yes, you should see improvement with anxiety as the gut heals. Can take a year or two for complete healing.
  23. A few words of encouragement...starting this journey can become very overwhelming no matter what direction you go in. But hang in there and stay positive. You can and will help your son. You are on the right path already. There are a ton of people on here with information to share and support to offer.
  24. My son's primary tic was a vocal. It was ALWAYS worse at night, in bed, before falling asleep. As his vocal tic began fading bedtime ticcing was the last to fade away. Tics often look or sound voluntary.
  25. Have you tried eliminating milk? That is a tic trigger for many.
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